Barriers, Bridges and Books

"Mental Retardation," Quality-of-Life, and Kidneys--Oh MY!!!

2012-01-14T15:35:00.012-05:00

This is a picture of Andrew taken through the snow this morning. (You can read more about him here.)

This is what my friend Kim, Andrew's mom posted on facebook this morning:

"Things I didn't know when Andrew was born... 1. that he has Down syndrome 2. that before he turned 18 he would be interviewed by TV & newspapers, make history as an actor, and be on a billboard!"

This, on the other hand, is the story of a little girl named Amelia who has been denied a donor kidney by Children's Hospital of Philadelphia because of the assumption that there are more worthy and less worthy people--and that worthiness is determined by IQ...

Quite the juxtaposition, don't you think?

The physician said he was warned that Amelia's parents were very involved with their child--like that's a bad thing... As if HE is the one who truly knows the child's value and that THEY are the ones that don't get it... The doctor also stated that denying the kidney was difficult for HIM (well, it's killing their daughter!)

Ableism is more than unkind and ugly... Ableism can kill.

Here is a post (from quite a while ago) that explains some of the ways life with intellectual disabilities has changed since this physician was in med school.

Please, read, sign the petitions, write a letter. Help save this little girl's life.

The following is a little blog carnival about Amelia:

Terri Mauro at About.com
Stephen Drake, Not Dead Yet
Pipecleaner Dreams
Kidneys and eyes
Autistic Hoya
Susan Senator
Age of Autism
Jews and Special Needs
I Can Has Autism
Love that Max
Care2 make a difference
Transplant Headquarters
ReunifyGally
Disability Studies, Temple U
Countering (Big list of supporting blogs in this post!)
USA Today
More from Susan Senator on Huffington Post
Ryn's Tales
Bad Cripple
I Don't Know What to Say
Vitals on msnbc.com
AAMD

More to come later....

Mothers' Day

2011-05-08T22:10:00.000-04:00

We win.
No one knows it but us.

But we do.

We are the parents of kids with disabilities who get to see the true value of our children. Though it can hurt, we get past what we thought our children would become. Though it’s painful, we get beyond whatever society decides what our children can or can’t do. And, no matter what we used to think, we stand up to build the life our children need, want and deserve.

We go beyond our past ideas, to the gift of the child that is. Our world view explodes... and then expands.

We struggle. We worry. Sometimes we rage. Sometimes we cry.

And…

We are the lucky ones.

We get to know miracles. We know just exactly what it takes to learn. We know just how many muscles must respond to make a person able to walk or talk. We know just how the process of language unfolds and what it really means when it works or when it doesn’t. Reading, writning and arithmetic are more than assumptions for us.

We get to figure out what really matters. We know about justice (and injustice.) We know stuff we never thought we would or could.

We treasure moments.

And, no matter what society sees or understands, we know that love is not about ability or response to intervention or any other standard or value. We know the meaning of and the reasons for ‘fierce.’

We change the world.

Unconditional is us.

It's not easy, but we get to see behind the curtain.

We are challenged. We are stressed. We fight like tigers and sometimes we are frazzeled to the bone.

And we are blessed.

Happy Mothers’ Day to all of us!

Aiming at Sarah Palin--but Hitting her Two-Year Old

2011-04-23T12:53:00.000-04:00

So infuriating.

I have been away awhile fighting the home fires on enough fronts to make my hair straight (seriously!) But the cultural bias about disability apparently continues...

It was Sarah Palin's son Trig's, birthday this week and Sarah Palin posted a cutesy poem about him on line. In response a political commentary blog posted a criticism--not of Sarah, but of Trig... calling him that ever-favorite R-word because he has Down syndrome...

Political commentary has devolved in this country to the point where namecalling and playground slurs really don't surprise anyone--it's cheap and easy and gets adrenalin flowing. It isn't cute, and it certainly isn't intellectual, but it is 'the way it's done' in 2011. (You might have noticed this...)

Usually though the target is at least an adult... and involved in politics....

They have removed the post. The author says in his statement that he is just angry that Sarah Palin uses her son as a political pawn. And he might even have a point--children of politicians are always part of their 'package.' The ultimate example that comes to my mind are Caroline and John-John. People might have agreed with him--if only he had made that point.

And let's just say, again, that if Trig had been of any minority other than disability, said author probably would not have resorted to a slur to talk about him...

H/T to Stephen Drake for bringing this article to my attention.

Unfamiliar Territory: Letters and Lessons and PANDAS

2011-04-11T16:09:00.000-04:00

Oh my. :)

When my oldest daughter was little I was so impressed with my little darling's ability and interest in reading and writing. We encouraged every attempt at a list or sentence or story. We thought she was amazing. Then she got to kindergarten. Her teacher looked at me with her eyebrow up and firmly told me that it was clear that our daughter had not been taught proper letter formation and that if we didn't start practicing with her EVERY NIGHT her poor writing would HOLD HER BACK. Then she proceeded to teach me how to write all letters starting with my pencil at the top line. (So the letter A would be formed Top down-Top down-Crossbar. And only this way. Ever.)

I went home shaking in my shoes. I practiced with her the first time right when we got home and went to bed that night with nightmares about her penmanship HOLDING HER BACK...

A few days later I talked with one of my girlfriends whose kids were going to Montessori... I explained all about the dire consequences of improper letter formation... My friend said, "I don't think so." What???? But Mrs H. said.....

My friend said that at Montessori they teach cursive writing before they teach printing because they believe that it's the lifting and placing the pencil on the page that is difficult for kids. "You can't tell me that everyone who ever went to Montessori has failed at life. And don't a lot of people just type? And what about people from other countries? Some languages don't even have an A"

Well yeah... duh!

I progressed eons that day. Let's just say I chose what I wanted to panic about after that--nobody could make me by just saying so!

(You will be happy to know that I can't actually tell you how she writes an A anymore and yet she does seem to be holding her own!)

This happens sometimes. Experts disagree.

What one group of people see as essential another see as superfluous or even dangerous...

This is not new news of course. People change schools and doctors and hairdresses and plumbers all the time.

I have friends who have taken their kids for heart and other surgeries to other cities, because things were available there that weren't here. And I know of kids with various disabilities who have received all manner of treatments or therapies in different cities or even countries essentially because the experts in various places face the same problems in different ways--there is more than one way to draw an A.

While I know many folks who have travelled for the treatments their kids needed, up til now we have never considered it ourselves. The only time we have even talked about an out of town specialist was for an eye issue Jenn has. But she responded to treatment. And recently a specialist has actually moved here (wasn't that nice of them?)

But suddenly things have gotten more controversial...

Jenn has had a change of behavior and an elevated ASO titer and her behavior is improving with antibiotic treatment... some medical practitioners would call that PANDAS... others would not.

Noted experts in one city (mine) don't believe in PANDAS... while experts in other cities do. Some big-name hospitals have PANDAS protocols... ours does not. Both groups are lettered, respected, learned people and respected institutions (I am not being sarcastic, they are.)

And they don't agree.

And all of them can give you a thousand well thought-out reasons why...

Obviously, this is much bigger than how to make an A... there are side effects and consequences on both sides of the equation. And a kid in the middle.

Then add in that no matter what either group of experts HAS looked at, you can bet that neither group has looked at 17 year olds with Down syndrome...

So, it's on us.

So far, I think the antibiotics are fine... she seems to be responding--even acquaintances are noticing improvement--and it's not like the treatments for things like OCD, behavioral disorders, etc will not still be out there once she is off the antibiotics... And strep is going around... Not sure how we feel about transfusions... Can't imagine talk therapy making a bit of difference...

Sure as heck can't leave her where she is.

We have a thoughtful medical team, we read and discuss and discuss and read. We listen... whether we agree or disagree... we challenge (because then they tell us more)... we pray. We take a step.

Rinse. Repeat.

This is my present process anyway... if you have one you like better please share!

Long Time No See... and PANDAS Syndrome

2011-04-10T23:03:00.000-04:00

The past few months have been a heckuva ride. First, I got a new job working DAYS!!! And yes, I do really like having a life for the first time since my kids were born more than 20 years ago (!), still finding it a little hard to embrace the fact that this life is MY life, but I'll get there!
The big differences? I sit all day. No really, all day. At a computer. I have had jobs where I run more or run less, but sit?? Not ever... until now. Also, I have no keys. None. Just as well since I don't wear a uniform and I don't have any pockets...

It's weird I tell ya! New, interesting, engaging and weird.

And, Jennifer developed something called PANDAS Syndrome. Haven't heard of it?? Well, I hadn't either. And neither has much of the medical community. And many of those who have don't " believe in it" (whatever that has to do with anything...)

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (so get that black and white bear right out of your mind!) Simply put, it's OCD symptoms caused by the antibodies your body has built to combat strep. The antibodies attack the brain. It can be reversible. Of course you have to find it to treat it.

Back in January Jenn went from a friendly, social, FUNNY kid who could read a bit, was independent in bunches of ADLs and really enjoyed much of life to a kid who made no eye contact, stimmed constantly flicking her hair, saying "GUH" over and over and over and absolutely furious if you interrupted any of her activities, whose teacher told us she had to move from reading activities to picture-based activities and who was independent in nothing. She stopped answering, let alone conversing, barely fed herself, and needed help with virtually everything. And flat, flat, flat--unless of course she was raging. It was awful and so terribly sad.

We took her to the doctor several times and she had tons of bloodwork. Celiac, no. Thyroid, no. Leukemia, no. Anemia, no. You name it, that wasn't it. The only level that was out of the ordinary was an ASO titer of 400. Our pediatrician put her on an antibiotic and we thought that would be it. But it wasn't.

Fortunately my friend Louise in TX remembered a conversation with a friend whose daughter had had an adverse reaction related to their ASO titer. That led me to Google which led me to Saving Sammy by Beth Alison Mahoney.

That antibiotic didn't do much and the folks our MD consulted with thought PANDAS was not something real and that even if it were, 400 was not a very worrisome number either way. To their credit they didn't come out and say 'get off the internet, mom,' but they were clear that they did not believe. Other medical folks I spoke with implied 'this happens sometimes...' This sapped my energy in ways I can't even describe. So there we were.

It took a couple of my friends to grab me and say REALLY?? In just the tone of voice that a person needs to hear sometimes... finally I reacted:

Yeah, baloney! (Or something like that!)

Back to the doctor we went. Jenn had more bloodwork. And an EEG--no seizures. A neurology visit--nothing conclusive. And an MRI--no structural issues (thank God!!)

And her aberrant behaviors continued.

Our pediatrician and my friend who is a neonatologist (but was my friend first!) did not give up, thankfully. We did more bloodwork last week looking for something else and a repeat ASO just because. Our pediatrician called at nearly 9pm last Saturday night (Yes, on Saturday. Yes, she is wonderful.) to tell me that the ASO titer that was 400 in February is now 1600...

Jenn is now on Omnicef and it seems to be working. She is beginning to make eye contact and interact... she is not "herself," but she responds when you talk to her, smiles occasionally, and flicks her hair less. It feels like we are on the right road.

Lessons?

Network! My friend remembered a conversation about ASO titers. And other friends and family have held our hands, smacked me around (figuratively) and helped us through this very upsetting mess.

After I read Saving Sammy I contacted the author. She has provided lists of doctors with PANDAS experience and has a facebook site with discussion boards that have been very helpful.

Believe yourself. Some of the medical world forgets... forgets that flesh and blood is involved... forgets that the criteria of a study only determines who they studied, it does not determine who could ever catch/develop something. I was afraid of being unreasonable. I am not so scared of that right now.

Persist. No matter what.

And...

PANDAS may exist... just sayin'

Picture from here.

Big Doings in Rochester!

2011-02-12T14:24:00.000-05:00

Geva Theater in Rochester has a new play opening this week and one of my daughter's friends is in the cast!! The play is called Over the Tavern and has played in many cities around the country, but this is the first city where a young man who has Down syndrome plays the character with Down syndrome. (Plus it's Andrew! We have known him since he was a baby and Jennifer thinks 'he is so funny!')

According to Andrew's mom, the character isn't as high-functioning as Andrew which was a little worrisome at first, but that's why they call it acting!

This is a great opportunity for Andrew, it is nice exposure for people with disabilities and good experience for the theater as well... And they say the show is funny. We are getting tickets--hope we see you there!

Book Review: The Guide to Good Health for Teens and Adults with Down Syndrome

2010-10-25T16:54:00.000-04:00

Woodbine House sent me a copy of The Guide to Good Health for Teens and Adults with Down Syndrome by Brian Chicoine, MD and Dennis McGuire, MD.

The authors are physicians at the Adult Down Syndrome Center of Advocate Lutheran General Hospital in Park Ridge Illinois which has served more than 4500 people with Down syndrome since it opened in 1992. The authors tell us that neither of them are parents of a child with Down syndrome, but are willing to work with and listen to people with Down syndrome and have done so for many years (many readers will know the authors from their presentations at the National Down Syndrome Congress Conferences each year.)The book is based firmly in research and clearly benefits from their considerable experience.

Written in a personable tone that is informative and low on medical jargon there are chapters discussing each bodily system including skin, eyes, respiratory and digestive systems and more. Each chapter focuses on things things that are more common or are experienced differently for people with Down syndrome. There are also sections about health and wellness in the community, as well as outpatient and inpatient care--and handy things like 'what to look for in a physician.'

The authors share a nuanced understanding of the ways cognitive disabilities affect both health issues and their treatment. They recognize tendencies that people with Down syndrome seem to follow (without becoming stereotypical!) They also acknowledge some differences that are evolving as the quality of things like education and healthcare for people with Down syndrome improve.

I really appreciated things like the section on encouraging more fluids as well as the chapters on overarching issues like Preserving Health and Well-Being over the Long Term, and discussions about advance directives and such.

When Jennifer was a baby the book, Babies with Down Syndrome was never out of reach. This is the book to keep on hand for adulthood--both to review health and preventative needs and when facing health concerns. I found it to be informative and accurate and accessible. There is also a companion book by these authors called Mental Wellness in Adults with Down Syndrome.

Movie Review: Wretches and Jabberers

2010-10-18T17:00:00.002-04:00

Larry Bissonnette, Jenn and I

I know it is the month of Down syndrome awareness, but I hope you will indulge me a few minutes discussion of the WONDERFUL, EXCELLENT movie I had the opportunity to see this weekend.

The movie, Wretches and Jabberers, premiered this weekend at the Syracuse International Film Festival so Jenn and I went on a roadtrip to see it.

It was directed by Gerardine Wurzbur who also co-produced it with Douglas Bilken, PhD from Syracuse University (and the marketing director is a NYS Partners in Policymaking grad, Jennifer Russo!) It tells the story of two men who have Autism, Larry Bissonnette and Tracy Thresher. The two men were believed to be unable to communicate until adulthood when they both learned to type. The movie chronicles their trip to three countries, Sri Lanka, Japan and Finland, where they go to share their message that there is more inside people with disabilities than the world knows.

The movie is totally engaging from beginning to end.

The paradox and the challenge of autistic behaviors that obscure the wit and humor, depth of feeling, and sense of connection (yes, you read that right--conection!) these men express, is by turns fascinating, tragic and, as a disability advocate, envigorating.

Every moment was interesting. Each person's daily life, the interactions with the men who provide communication support, the challenges of new countries, customs and foods, the absolute hunger for connection of the young people with autism in the other countries each could have been their own movie. The humor... the art... the poetry... the advocacy. Endless layers of meaning.

I can think of about a thousand telling examples to share, but I will give you two:

In Finland Larry, Tracy, their team, two students with autism, their parents and a translator went out to dinner. This meant there were four people communicating by typing on their computers and then handing them to the translator to be read in both languages. Many people would decide that this was too much trouble. This crowd was undaunted. Hearing each other was just so important.

Another favorite moment was a conversation between Tracy and Larry. They were sitting on a bench typing to each other. Tracy wrote that he was enjoying the friendship and fellowship of being together on this once-in-a-lifetime journey. Larry replied, "Feasting on my friend's company I store up memories."

I wrote this down--I want to write it on my wall.

Breath-taking!

There is so much more in this film that could be explored: spirituality, civil rights, homelessness and beyond. How they packed so much into a 90 minute movie and left me wanting more I do not know. This is why they are filmmakers and I blog!

The movie was followed by a panel discussion that included Doug Biklen, Ph.D., Larry Bissonnette, Pascal Cheng, Harvey F, Lavoy, Tracy Thresher, Gerardine Wurzburg and was moderated by Lakshmi Singh a newscaster from NPR. The insights, humor and fascination continued in real time!

I was also impressed by the accessibility. I noted sign language interpretation, real-time captioning and Write Out Loud. The event was welcoming for a wide spectrum of people--very profesionally done.

During the panel discussion Gerardine Wurzburg announced that the soundtrack from the movie will be available soon--trust me, this is a good thing! They had original music, much of which came from things Larry and Tracy typed. And they were sung by such people as Ben Harper, Judy Collins and Norah Jones.

In the panel discussion Larry wrote that they were meant to be movie stars and walk red carpets to share their message.

And either in the movie or in the panel discussion (I can't recall which) Tracy wrote that he and Larry could become a sideshow, but that their goal was to go beyond being a sideshow to get out the message that all people should presume competence.

This is a story of AND.

"Severe" Autism AND Relationships.

Behaviors AND Intellect.

External Challenges AND Interior Depth.

Needs to be met AND Gifts to share.

AND it is a thing of beauty.

Bring it to your town, you will be glad you did.

Down Syndrome Awareness Month 2010

2010-10-14T16:29:00.000-04:00

This billboard is gracing my hometown today thanks to Freed, Maxick and Battaglia CPAs of Rochester! And thanks, of course to all of the sponsors, donors and participants of our annual Buddy Walk. Just LOVE seeing our name in lights!!

Grab This Button

You may have noticed that I am not posting 31 for 21 this year. I just can't, but a lot of folks are and if you click this button you can find a list of wonderful blogs all about people's experiences with Down syndrome. A mega blog carnival, if you will.

Enjoy!!!

Horror Story

2010-10-11T17:24:00.000-04:00

I have been following this story out of Texas. It makes me ill. Take a few minutes and read it, I will be right here when you get back!

I find this painful in so many ways:

It sounds like these parents did everything right. They raised their daughter to be an individual with interests and abilities and moved her into her own home (with the supports she needed) so she would have her own life in place before something happened to them... and they have advocated for appropriate care for her... And doing everything right has not protected them or her.
Ruling out medical concerns before giving antipsychotics is not just Best Practices, it is Med School 101. Bottom of the line basic medical competence.
A 'secret hearing' with permanent consequences in the USA? No facing your accusers? No jury of peers? I could understand the courts having the right to make a temporary emergency judgement to get someone out of a dangerous situation, but a permanent secret decision?? This can't be right.
Then criticism for the parents for taking it to the newspapers--when they were not allowed in the courtroom? They should just lie down and take it?
The statement about the system meeting an average is not right--what this means is that the system fails in half the cases... therefore it is just right?

Here is another article with video. In the video, among other things, we hear that her daughter has gained 20 pounds and seems lethargic (or sad...) on this new regimen. This is evidence that she is NOT thriving, is it not? Is the secret committee intervening now?

This story terrifies me. From everything I read we are these parents. We care. We advocate. We insist that our daughter be considered and treated as an individual with significance--always.

I hope the parent groups in Texas are standing in solidarity. I hope they are realizing that their progressive and effective beliefs and expectations for their children may have no bearing either if they don't.

Reluctant Book Review Because My Silence Will NOT Protect You!

2010-09-29T16:30:00.003-04:00

I admit I am nervous about writing this post. I know that this is a topic that makes a lot of people uncomfortable. And I know the spam this post will draw is bound to upset me... But this is a topic that is just too important to avoid.

The Book: Teaching Children with Down Syndrome about Their Bodies, Boundaries and Sexuality: A Guide for Parents and Professionals by Terri Couwenhoven, MS.

Yes, I am going there!

Safe and appropriate knowledge and behaviors regarding our bodies and our sexuality are necessary for anyone to be successful and happy in this world. Yet a number of factors often work together to deny this essential information from being successfully taught to people with Down syndrome.

Many people believe that people with cognitive disabilities are eternal children therefore teaching appropriate boundaries, etc doesn't matter... others believe that information about sexuality and relationships is just too complex for someone with Down syndrome to learn. Then there are myths like the one that people with Down syndrome can't be taught safe boundaries because something in them makes them hug (ugh!!!)

That's right, it's a myth.

There are also circumstances related to disability that create what the author calls 'altered scripts.' For example, your non-disabled children learn about privacy because once they become independent, adults no longer go with them into the bathroom, for example. A child that needs assistance with hygiene tasks longer, or always, does not learn about privacy the same way or in the same timeframe as other children.

And, let's face it, it can be really uncomfortable to read about the particulars about things like intercourse in relation to our children, and terrifically difficult to think about teaching these and the more abstract sexuality concepts to someone who is a more concrete thinker or who needs a lot of support to learn.

But none of this makes avoiding sexuality education acceptable.

A lack of correct information--or any information at all--about how their bodies work or how to take care of themselves, how to seek attention and how or when not to, and how to say 'no' can have terrible consequences. People who do not learn to appropriate behaviors and boundaries can end up completely isolated, can be negatively labelled, abused or can even be arrested. This is tragic and largely preventable.

This book is both overwhelming and excellent. It is overwhelming because it becomes clear early on that ABSOLUTELY EVERYTHING you have ever done, taught or modelled (on purpose or not) has an effect on your child's understanding of these materials! It also makes you realize how important correct information about the body, sexuality and relationships is to having a happy, healthy life.

The book is excellent because each chapter breaks down an important topic into manageable chunks. Each chapter has a combination of background information, a number of concepts to think about and teach, teaching strategies, activity suggestions and stories from the author about people's experiences. There are chapters on the body itself that include teaching names for body parts and teaching hygiene, chapters on puberty, developing relationship skills, privacy, dating and more. And there are helpful hand-outs in the appendix that can be copied to support many of the chapters.

I like the way the book addresses concrete things like how to trouble-shoot issues with hygiene AND more abstract concepts like "how to tell if someone is not interested in you." The book talks about how to have a healthy relationship and how to avoid and handle exploitave situations. It doesn't minimize or avoid the challenge or the necessity of teaching any of this information. The author has a daughter with Down syndrome herself and years of experience teaching sexuality and her understanding really shows.

In one respect I think that every parent of a child with Down syndrome would benefit from this book. I think parents of younger children would benefit from having a big-picture view of where seemingly little things like lack of privacy and indiscriminate hugging can lead and some tips for addressing these things early.... In all honesty though, if this book had been available when my daughter was younger it would have sat unopened on my shelf. So much of the book is geared toward older children--and so many of the topics are things that NO parent considers very deeply for their small children that it would have remained on my 'manana mountain' for a long time. (I do think that parents of younger kids could use an introductory level book to start them on the right road though. And if the author writes one I want you all to remember that it was my idea!)

I think that by the time your child is 8-10 years old this book is extremely helpful and pertinent. That will seem early to some, but as Ms. Couwenhoven says, "Puberty happens in all people, whether we are ready or not!" Better to be ready, I say!

By the same token, I don't think it is ever too late to start to use some of the information in this book. Life is a process and better understanding of self and relationships would enhance anyone's life at any time. Parents and professionals working with teens will find this book an ideal resource, and those working with adults will find lots of helpful information as well.

Read author Terri Couwenhoven's Top 10 Questions on Down Syndrome and Sexuality.

Not Just One, But Two Blog Carnivals are UP

2010-09-29T07:58:00.000-04:00

You read that right the Disibility Blog Carnival on Identity is being hosted at Astrid's Journal.

AND!!!

The TherExtra Blog Carnival on Music hosted by Barbara is also posted.

Lots of good reading in my near future... won't you join me?

I Hear Quacking

2010-09-24T15:47:00.000-04:00

You may have heard this saying before: If something walks like a duck and quacks like a duck, it's a duck.

I really like it. To me it's about cutting through the nonsense that people spew to distract you from their bad behavior... or to get you to sanction it... or something...

I have written before about the phrase "trust me."

Well, this week I have heard two more to add to my list of warning phrases.

The first was said by a teacher about a child whose needs are not being met in his classroom:

"But we LOVE Bobbie!"

Quack! (Then do what he needs!!)

The second?

"This isn't political."

This was said...

in NY.

By. A. Politician.

I know, I couldn't stop laughing either! Quack, quack, QUACK!!!!

I don't know the ins and outs of that situation, but it seems that one net effect will be removing a large group of people with disabilities from a person-centered model of care and putting them into the medical/agency model.

The only good thing is that these people have been empowered by years of self-determination. They may be in a position to push these agencies to drastically improve their services--I hope they will accept nothing less!

Picture by Alexander Kinks from here.

"I Do Believe, I Do Believe, I Do, I Do, I Do...."

2010-09-21T16:57:00.000-04:00

I told you last year that after a school career that was always to some degree inclusive (at least half the day), we moved my daughter to a special education program at a special education school... This was a huge change. It was a big change for my daughter and it was a seismic shift for me!

The good news is it is going great! Jenn LOVES her school. She loves her teachers, she loves her friends, she loves everything except math (which she didn't like before either!) She loves going out on the town for social things and for work experiences. She is a cheerleader and she's active in everything they have going.

She is more independent at so many things. She self-advocates much, much more. And she is making academic progress. It has been a very good move.

And yet...

Sometimes I feel pretty guilty about changing... and sometimes I feel completely misunderstood. One friend who has never believed in inclusion shocked me by saying "Terri used to believe in inclusion, but now she's seen the light!"

GRRRRR!! And all I could do was stammer and stutter ineffectually finally coming up with with, "Nu-unh!"

(So there!)

Can I have a do-over? Please?

First of all, more than I have ever believed in inclusion, I believe in choice and individualization.

Secondly, I absolutely do still believe in inclusion. I have always believed that people are healthier, happier and safer when they belong, when they are known and cared about in their community. And how can one become known or cared about without being present--at the very least, visible--in that community?

This hasn't changed. Honest.

Inclusion is a process, not a religion that one can be excommunicated from (exclusion from inclusion, really??) We believe Jenn is becoming more 'includable' because of the education she is currently receiving. That's why we chose it. We absolutely will have to work harder for relationships in our community to happen for her, and we know this.

What I truly wish is that I could name and quantify the very positive things that are happening at this new school so they could be applied in other places....

Here's what I have noticed so far:

The prevailing culture seems to be about growing the kids' world. It is much easier to build a smaller and smaller world for kids like Jenn, but that is NOT what we want. They seem to start with what she can do and then ask how could she do more. It is much more common to hear things like "she does well in small groups so let's give her lots of small group stuff." Here they seem to say "she does well in small groups, how can we enlarge that?"
They work hard at having a safe environment, but they are not obsessed with protection (protection is the consummate small world maker--it's also an illusion, but that's a post for another day!) They also work hard on teaching strategizing, self-advocacy and resilience. It's a good balance, I think.
They aren't afraid of the kids' emotions. When I toured the school the principal told me "Drama is where social skills are learned!" This is the absolute truth, if you think about it! The idea of sharing is easy, sharing when you REALLY don't want to is what really matters! Values/principles become real only through being challenged. I have to say that at our district school there were no real challenges--if Jenn had taken someone's seat or something the adults would intervene, but the kids would pretty much say it was ok... She's seen as a more of member here, I think, so she's fair game!
They practice differentiated learning and have not yet asked me, "But why does she need to learn that..." Some kids there are much stronger academically than Jenn, and some are not and the expectation is that they will all participate in every lesson I have seen.
They seem to take a facilitation approach instead of either 'letting her be there' or 'taking care of her.'

I do know the place isn't perfect. And Jenn has definitely experienced many of these things before... I am just trying to analyze what I see. What are the ingredients that make a program work for you or your child?

Hello, I 'm Baaaaaack!

2010-09-18T01:47:00.000-04:00

Hi, I'm home. What's for dinner?

My goodness it has been a long time since my last post.... sorry about that. The summer was fun... and hectic. Now we have two kids in college and to celebrate I picked up a second job. It's just a few hours, and it's for an advocacy agency helping with a writing project. All this means that my time and my writing mojo were all being absorbed for a while.

It seems now that I am adjusting to my new schedule because I want to read again and I am having ideas I want to explore and express beyond my project. This makes me happy--I enjoy the project, but I like doing my own stuff too.

I hope you all are well. I have missed you!

He Did It!

2010-07-05T10:08:00.000-04:00

It has been a hectic month--mostly fun... maybe a little bittersweet as well. Tom is set for better and for.... adventure...

Yeah, that's what we'll call it.

Gotta admit after reading this post by Bill Peace I have my fears. We did the best we could to set him up to succeed as himself. He knows himself--strengths and needs. He self-advocates and understands that there might be processes for getting things done (he has been at his IEP meetings since 5th grade.) He has the benefits of technology at his disposal and there is a disability assistance office on his campus who may have some ideas for him in a pinch, but this is the big leagues....

Overall, I am optimistic. He is, for the most part, a secure and resilient individual. He is undeterred by other people's attitudes. And he's a good guy, he looks out for others.

I'm very proud of him.

And I miss the towheaded toddler with the blue football tucked under his arm who bowed deeply after banging away on his toy piano as if our family room were Carnegie Hall...

Goofy kid--it's been a pleasure!

(I tried to upload a video for this... it says it failed yet still appears to be loading??? We shall see!)

Disability Blog Carnival: Tell The Story! (With Additions!)

2010-05-19T21:31:00.004-04:00

Well, at long last here is the Disability Blog Carnival on Story. I am adding posts and such as I go... so visit often, there may be new rides! :)

Let's kick off this carnival with the wisdom of Frida at Frida Writes. She speaks of the power of story to connect and empower. There are a quotes from Elie Wiesel and John Donne and this quotable nugget that is pure Frida:

"How do we change disablism? Read. Write. Speak. Or sign. Learn stories and tell them. Teach others how to tell them. Edit them. Publish them. Retell others' stories. The power is yours. The power is through words."

Laura at Decor to Adore shares a story of extraordinary persistence... with a wonderful ending!

Rickismom from Beneath the Wings writes of the power of the stories we tell ourselves.

Emma , A Writer in a Wheelchair considers writing about characters with disabilities as a writer with a disability...

Dreamer at Life is But a Dream tells the story of activites that seem easy to some people present unknown obstacles to others (and that minimizing concerns--by staff--does not make them go away!)

Spaz Girl from Butterfly Dreams shares the importance of collecting the stories of the Disability Rights Movement.

Amanda from Ballastexistenz shares a poem showing the difference between her life as she experiences it and as it is perceived (and judged) by those on the outside--professionals and others.

Barbara from TherExtras tells the story of a cat bite and the value (make that necessity!) of self advocacy when working with systems.

Astrid from Astrid's Journal shares a keychain story of self-realization.

Dave from Rolling Around in My Head tells the power of story at work.

Frogger from Special Siblings tells a success story.

And Penny from Disability Studies, Temple U shares one of the many stories of people with disabilities who came before. Stories absent from our history books and experiences...

Visit Media Dis-n-Dat and Disability News where Beth and Pat (respectively) collect disability stories that make the news around the world.

Lisa from Finnian's Journey shares her story of strides.

Cheryl at Finding My Way brings a video story of activism!

Go forth, tell your stories!

The next Disability Blog Carnival will be hosted by Dave Hingsburger over at Rolling Around in My Head... Also, Penny at Disability Studies, Temple U is looking for next hosts, go sign up with her!!!

Running Late

2010-05-16T20:06:00.000-04:00

It will take me at least til tomorrow to get the carnival out... or maybe the next day, but I will try to make it sooner! See ya then!

The Carnival's Coming!!

2010-05-10T15:57:00.000-04:00

The next Disibility Blog Carnival will be hosted here next week and the topic is "Story."

Here are some of my thoughts on story:

Story is the stuff of relationship. Story makes information meaningful and 'random' anecdotes connect.

People with disabilities historically have been removed from society's stories--they lived elsewhere, went to different schools, worked different jobs (or didn't), and to a large degree were left out of the history books...

The story society tells itself about disability--that disability is suffering and tragedy--often upstages the stories that people with disabilities live every day and tell whenever they get the opportunity.

Story introduces, bridges and explains...

Stories can be useful in advocacy and as therapeutic or teaching tools....

If you have a story to tell, or something to say about the power of story submit either in the comments on this post or on this post at Disability Studies. Or, if you put Disability Blog Carnival and Story in the title of your post we (and by 'we' I mean Penny!) know how to find it!

I will be collecting posts all week and plan to post the carnival May 16.

So, whats YOUR story??

(You're right Cheryl, high time I posted this!!)

Happy Mothers' Day

2010-05-09T01:04:00.000-04:00

Happy Mothers' Day All!

To all the moms who blog and advocate and parent and more: You are AWESOME!!!

Here is a post from a non-disability mommy-blogger (and isn't this one of the prettiest blogs you've ever seen?) for your reading pleasure. Enjoy your day!

Blogging Against Disablism Day 2010: It's Everywhere

2010-05-01T21:25:00.000-04:00

Well, it is still May 1st where I live!

When I was a kid my family read out loud together after supper (yes, we did have a TV, I am not THAT old!) At one point we read a Hardy Boys book that had peregrine falcons in it. We had never heard of them so we looked them up in the encyclopedia (Google for the 1970s.) After that we all ran into peregrine falcons everywhere--in the newspaper, on TV, in stories and more. I can remember my mother saying, "And to think we had never even heard of them a month ago!"

Well, disablism--prejudice against people with disabilities--is like that.

Once you know what it is it's astounding how pervasive it is.

Today is Blogging Against Disablism Day. For 4 years now, all around the world, disability bloggists have been writing about disablism on May 1 and posting it with Goldfish. I was regretting that I had posted my disability rights "manifesto" earlier in the week thinking I should have saved it for today, but I should not have worried. In the past 2 days I have run across plenty of 'inspiration' without even looking.

Here is what I have seen:

Sometimes disablism is exploitive and screams at you in the check-out line. Today's headline of the National Enquirer blared, "Brad and Angelina: TWINS HEALTH SHOCKER! Tragic DOWN SYNDROME reports surrounding Vivienne and Knox.

The article was titled NEW FAMILY HEARTBREAK and the first paragraph went on to say blah, blah, blah, suffers with Down syndrome, blah, blah, blah.

The rest of the article mostly said Brad and Angie would be fine if their kids did have Down syndrome, but don't like all the attention...

Because, of course, Down syndrome isn't tragedy and suffering. But disablism is selling the papers...and selling those papers is reinforcing the disablism--the negative stereotypes about Down syndrome.

Sometimes disablism is utterly horrifying as in this article from a commenter's blog. I am having trouble with the statement that to be called a hate crime someone has to die... certainly this pervasive, perpetual terrorizing is not motivated by high esteem...

Sometimes disablism is unconscious. This video was showcased on another blog I enjoy. It is about what it takes to make an award-winning movie. The blogger who posted it wouldn't have if they had noticed. The video is lighthearted and not intended to offend. Yet it does. (The intro picture looks like the video will be sexual, it isn't.)

Sometimes disablism is institutional and even people within the disability world don't recognize it as this article illustrates.

So what's the answer? There are many of course, but here are a few of my favorites:

Presence: Be there. Part of the reason disablism is so common is because people with disabilities have lived lives separate from their communities until recently. The more people live together, the more relationships will be built.

Protest: Speak up and speak out. Assert the rights of people with disabilities, when you are hurt or treated disrespectfully find a way to say so.

Persist: Expect that you will confront disablism in some form many days and in many ways. Stick with it again and again and again...

Participate: None of us can--or should--join in every battle, but where you can, do. In the past year there have been many distressing disablism incidents and every one of them has led to increased awareness in our communities because people with disabilities and their allies have been there to identify the problem, shine light on it and ask for something else.

Pay attention: learn from each other, read each others' ideas, adopt each others' strategies and enjoy each others' company.

Perhaps something like reading or writing for a blogswarm....

BADD is good! Check it out! (Thank you Goldfish!)

Autism Awareness Month: Update on Arrest Story

2010-04-28T23:55:00.002-04:00

The young man with autism who was arrested last week for disruptive and aggressive behavior after an upsetting day at school had a court date today.

The judge wants to learn more about Autism, the school is trying to improve its procedures. And the state has decided he does not qualify for services (likely part of the Autism as developmental disability vs. mental illness dilemma that swallows many New Yorkers whole.)

I think it sounds like they are on a road that could lead to some good for both the boy and the community-- I hope so and will keep watching.

It Doesn't Go Away... But That is OK

2010-04-28T17:44:00.000-04:00

I talk to a bunch of parents whose kids are diagnosed with NVLD (or NLD) and because my son is 18, and because he was diagnosed when he was young (which makes us experienced), and because he is pretty successful with his accommodations in place, there are a lot of parents who see him as "cured."

Well, he's not. (And he has given me permission to tell you so.)

We went to visit a college last week. Yes, this is late, but not as late as the visit we will make this week! (The decision must be made by May 1.) We were riding in the car and started talking about the Autobahn... and, thinking I was being cute I said, "Not to be confused with Audobon..."

"Audobon?" My son asked.

"Yeah, he was an artist in the 1800s. He painted birds."

There was a really long pause...

"I... don't understand," my son said.

"You don't understand paintings of birds?"

Then he got hysterical.

Yeah. He was imagining painting ON birds.

Too funny!

He can still be a bit literal (I say this knowing that that phrase will really bug him... one of the joys of motherhood!)

And organizational skills and processing time, and handing things in, and a few other things are still a big part of the way he is. The beauty is that he knows this and has a bunch of strategies that he knows how to use to help himself.

I expect he will have some struggles related to his diagnosis at some points in his life. I also expect that he will approach them with his trademark good humor and analytical processes. I expect he will take the things he knows and apply them to the things he needs... I expect he knows how to self-advocate and will ask for help sometimes. I expect some times he will muddle for a bit. And I expect he will figure out his own way in the world...

With his disability.

This phase of life is an adventure for everyone. He does have some different issues to contend with...

And he will be fine.

Picture from here.

Love This

2010-04-27T16:24:00.000-04:00

Oh wow! I just saw this video on this blog. And I just LOVED it. Must share!!!

So, what do you think???

The 20th Anniversary of the ADA is This Summer And Yet.....

2010-04-26T06:30:00.002-04:00

Barbara sent me to this link. And it is appalling. A young boy who uses a walker visited the playground at The Galleria Mall in Dallas in 2010 and the security staff REMOVED HIS WALKER from the play area because it is supposedly a hazzard. (The playground equipment is NOT a hazzard, but his means of mobility IS...)

These security guards are 20 years behind in their profession. Yes, that's right--the ADA has been the law of the land for 20 years (this July.)

In Dallas, Texas (not some tiny town.)

Lovely. Who else has a chance??

So, what can we do?

If you live in Dallas, a phone call or letter to the mall's administration letting them know that you find this unacceptable and a suggestion that all of their security guards receive training about the ADA and their responsibility in upholding it would be lovely. Bonus points for anyone who writes a letter to the editor!
There are many Galleria Malls around the country. A call or letter to the mall administration in your city referencing this incident in Dallas and asking what sort of ADA training is required for their staff (and suggesting where they can get some if you happen to know!)

Situations like these are why I wrote my 'manifesto' ... and they are the reason this blogger, and this blogger are in Washington this week.

Twenty years is long enough to wait for access, rights and respect. This little guy should grow up in in a world without this blatant discrimination--and we can help.

Leave a comment if you decide to take some action!

I've Gone and Done it Now

2010-04-25T06:30:00.005-04:00

I have written a manifesto. It's short as manifestos go... and I think fairly low on scary ramblings (edit, edit, edit!!! :)

Here it is:

I believe in the Disability Rights Community.

That is to say, I believe that disability is a natural part of the human experience that is often misunderstood by our culture and I believe in the people with disabilities and their allies who recognize that human beings are undiminished by disability. I support these people who strive for respect, recognition and rights.

We are a minority--there are very few of us.

We are extraordinarily diverse--in diagnosis, in capacity, and in interests. A linear approach where we will all take the same steps at the same time is not for us.

Yet I believe.

I believe because there is an ADA and an IDEA--there wasn't always.

I believe because the Paralympics exist--and any gets televised. More than last time (and there will be more next time, if we work on it.)

I believe because the Community Choice Act, the CLASS Act and Medicaid are all discussed in our nation's capitol.

I believe because I have seen kids and adults speak up for better treatment--for respect.

Because disability advocates met in the White House

Because movements started by people like Ed Roberts and Justin Dart continue against the odds.

There is Closed Captioning and Assistive Tech and Dragon Naturally Speaking and voice output apps for iPhones.

Do I think any (or all) of these things are ENOUGH? Are we DONE??? Have we created the situation where people with disabilities have a fair shot at a decent life throughout our land??

Umm, no.

Can I follow, jump into and address every single disability related issue? Do I even want to?

No.

But I believe. And if your work advances the understanding that ALL people with disabilities are complete human beings and full citizens NOW (not once they've jump throught some normalizing hoop), I claim that we are on the same team.

So, if you encourage moms, parent your own babies (or teens, or adults), train youth leaders, promote sports, take on the bioethicists or the lawmakers or health practitioners... (or if you are one of these!)

If you try to to improve the lives of people with disabilities one word at a time, one conversation at a time, one story or history at a time, one potluck at a time, or one protest at a time....

If you promote equity, understanding and inclusion through activism, authoring, through caregiving or on the airwaves...

If you focus on children, or teenagers, or adults or the elderly, or parents, or professionals... advocate, self-advocate, or allies...

If you work with acquired or lifelong diagnoses, if your issues are cognitive or mobility, or illness related, or if you know most about blindness, or paralysis, or amputations, or deafness, or autism, or aging--or something else entirely, I AM FOR YOU.

If you advance functiion or philosophy or legislation... from within systems or against systems...

Or any combination thereof...

I believe in you and in what you are doing!

We may never be unified, but we can unite. And where I can unite with you I will.

The world IS different for people with disabilities today than it was even 10 years ago. While our approaches may never be the same you will NEVER hear me say that you are wasting time, I will not minimize your efforts or concerns. You won't hear me call your work PC or useless. We may not always have the same priorities, but we will find ways to work together.

I am proud to be on your team and I applaud the work you are doing in this world!

That is all.

(See my blogroll for examples of all of these types of advocates!)

Tis the (Blog) Carnival Season!!!

2010-04-23T16:30:00.002-04:00

A blog carnival is a collection of posts written by various authors (often) on a single topic gathered into one handy place. I have been participating and reading them since I started blogging. Participating in Blog Carnivals is fun to do. They are a great way to learn about different perspectives and to 'meet' new writers, and to have them meet you. The current Disability Blog Carnival, #65, is about 'Balance' and it is posted over at River of Jordan. There is a variety of interpretations of Balance... all good reading. Enjoy!

BREAKING NEWS: Barbara at TherExtras is hosting a blog carnival of her own as we speak!!!! Her topic is Childhood Expressions. Head on over for some good reading.

May is a big month for blog carnivals. The annual BADD (Blogging Against Disability Day) is May 1 hosted by Diary of a Goldfish. Disablism (more often called ableism in the US) is societal prejudice about disability--often a bigger obstacle to success than any diagnosis. Writers write and Goldfish compiles hundreds of post from around the world for this event. To participate (and to grab her cool widgets) see here. Once this is posted you'll want to bookmark the page to go back and do some reading whenever the spirit grabs you.

Disability Blog Carnival #66 will also be hosted in May by me. The theme will be "Story." I will let you know more about that in the weeks to come!

Note to Self: Never Read the Comments!

2010-04-22T16:30:00.001-04:00

I read this post last week about a British woman who was shocked by a comedian's remarks about people with Down syndrome. It is a great post--she has a beautiful daughter and I really like her non-confrontational, explanatory approach.

Naturally, I couldn't stop there. I forgot myself and read the comments--and it was truly painful.

There were many comments supportive of the woman's experience, but the rest were pretty vile.These are not folks that disagreed with her opinions, these are folks who were furious that she voiced an opinion at all. Disagreement keeps things interesting, but these people didn't say that they saw things differently, they verbally assaulted her.

First there were the folks who feel that people who don' t like something should NOT say so... have you noticed that these folks do not follow their own advice?

Then there were some who needed to blame the victim--her pain is her own fault.

Some shared the comedian's stereotypical view of people with Down syndrome.... and tried to prove themselves right (really???)

Still others made the case that if she wasn't a perfect person she had nothing to say--another group who should show us how this works by example... but they never do, do they?

Lots of forms of "Just Shut Up!"

Ugh.

My opinion? If someone hurts you, you have the right to say both 'ouch' and 'stop it.' You do not have to just lie there and take it, whether anyone else likes it or not.

Now some might say don't just skip the comments, don't take a stand at all, but I don't agree. It may be small comfort, but there are a whole lot of people talking about disability respect today because of this event who had never thought about it 2 weeks ago...

And, while reading the comments may give you an ulcer, activism actually makes people happier.

Plus, there is a really great disability-blogging community. (We're wonderful... just ask us!)

I hope these small facts will help this mom hang tough!

Words Hit Like a Fist image from Rolling Around in my Head.

Autism Awareness Month: So Much to Teach

2010-04-20T16:30:00.000-04:00

Read this article to see what happened in a town near Rochester this week. The charges have not been dropped. There is a court date.

This story is so hard and scares parents--and should scare so many more people.

This boy's outburst is a symptom of his condition--a condition that made him respond to the sensory assault and destruction of his routines caused by 4 fire drills in one morning with agitation. These symptoms require intervention and accommodation, not litigation.

Could a safe, quiet space with routines of its own be designated for fire drills... probably. Could meds and routines be put in place to decrease agitation, possibly.

Can our courts or jails provide any of those things? Nope.

I don't know the reason the charges haven't been dropped, but I fear it's for the old familiar reasons: that there are people who think that people who hit people get charged... and things like 'he just has to learn...' etc. I imagine some folks saying, as someone often does, the community/school/whomever is not equipped to deal with these situations.

The answer to not being equipped is becoming equipped, of course.

People with developmental disabilites are not the only ones whose conditions have these symptoms. By this token elders whose Alzheimer's disease elicits violence from them should also spend time in jail... because the community/caregivers/healthcare facilities are not equipped to deal with that... We could empty out the nursing homes, hospitals and community caring situations right now...

And it wouldn't work.

The court/jail systems are not equipped to manage these conditions either. And does not have the funding or vision to become equipped for this either.

Because punishment does not alleviate symptoms.

The idea that 'we shouldn't have to' or 'someone else should.' deal with these situations holds no answers. Historically this leads to isolation and intstitutionalization leading to horrifying outcomes for people with disabilities at great cost to their communities.

Communities must become equipped. Autism education, committment to finding and implementing the individualized accommodations that people need are a community (including, but not limited to, schools, caregivers, law enforcers, etc) responsibility.

There is no substitute.

This is why advocacy exists. To build society's capacity to embrace its members.

Childhood Expressions

2010-04-19T06:30:00.002-04:00

Barbara at TherExtras is hosting this Blog Carnival inspired by William the Bear who has lived in Barbara's room since her daughter moved him in there. I had to join because I have a Lambchop doll who moved into our room one afternoon who will never leave either!

Childhood expressions are some of my favorite memories of my children. When my kids were little I had one earnest friend who chided me for not immediately correcting my children and allowing their immature understandings become part of family lore. Nearly 20 years later both of our kids are finishing up high school or headed to college and no one could tell which of our kids has silly family stories in their backpack...

(One of my children, however, hated to get anything wrong so some favorite stories will not be included here...)

Here are some of my favorites:

Bowl-hat: Is it food storage or a wardrobe accessory? At our house, both. Then we would wash them in the sink with mountains of suds. Still, a sanitizing dishwasher was good to have.
Ladies and Gempimum!!: An announcement made before feats of danger and derring-do--wise mother wears sneakers at all times and starts running before the end of the word 'ladies.'
Oh Poor Jeffer: this was another announcement that required mother to run. When baby Jennifer cried my son would say those words and then throw her the toy he was sure she was craving--a truck, a bowling ball... whatever... Her life would pass before my eyes every time.
Diamond Room: Dining room (it has a chandelier.) I kept this because we were the only family on the street who had one...
Ball Room: aka the living room... went well with the Diamond Room and the 'our home is our castle' meme--would have been even better if it wasn't because we had a ball pit (and a mini-trampoline) instead of furniture in there.
More Jesus Please: This was a signed request... hilarious because what she wanted was more Cheez-its.

And, drumroll please.... our family's all time favorite childhood expression is:

Can't Like It: This was (and often still is) my daughter's response to negative experiences... love this and use it all the time.

Too many chores, too little time and me the only one home to deal with it?

Can't like it!

Autism Awareness Month:Book Review:Autism and Allelulias

2010-04-18T07:00:00.003-04:00

I was sent a copy of Autism and Allelulias by Kathleen Deyer Bolduc to review for Autism Awareness Month and I have to tell you, I love this book!

I have shared my Christian faith here before, but I was a bit anxious about this book. I was not in the mood for a sappy faith and disability book full of "if you would JUST..." then your path would be easy and strewn with rose petals. I have too many faith-full friends who work too hard to understand, interpret and deal with too many issues to have Autism minimized in this way.

At the same time I cannot tolerate the "disability is tragedy" and "Autism is the enemy" mindset either--people with Autism deserve better. They have more and ARE more than those mindsets allow.

Happily this book does not go down either of these common paths. The author has a 24 year old son with Autism, intellectual disabilities and an anxiety disorder. She has dealt with the challenges of learning, behavior and societal challenges. And she LOVES her son and wants the most for him--now, not after he somehow changes.

In short, she gets it.

It is a lovely little book. It's written in a devotional format with short chapters headed with a Bible verse followed by reflective anecdotes. There are also some touching poems (one about good mothers brought me to tears.) And each chapter ends with a prayer--prayers of joy, prayers for peace or acceptance, prayers of gratitude. You can read it in small daily doses, or read as many as you want, all at once.

You will laugh, and you will cry.

I think any parent of a child with a disability could enjoy this book--I did and neither of my kids who have diagnoses have autism. I think any parent of a child with difficult behaviors would relate to this family--Bolduc is honest and descriptive--she knows where you are. And her interpretations of her experiences--joyful and tough--through the eyes of faith will be a gift to any reader.

Balance... Yeah, It's a Problem

2010-04-17T15:45:00.000-04:00

It is ironic that the first post I am writing after not blogging for nearly 2 months is on balance... Because the reason I didn't write for so long was indeed the lack thereof.

Ahhh well.

What can I say? Life is hectic. There is just so much going on: school, kids meetings and activities, work, life-maintenance and more. Disability, of course, adds to this--sometimes more and sometimes less. Truth is, when things get really out-of-hand my favorite things get thrown into the back seat and buried until I finally clean some stuff out, or until I just can't stand it anymore.

This is NOT a recommended method.

Not. At. All.

This is true if you don't have any disability issues to contend with... and more true if you do!

It is far better to establish some routines for the necessary things in life like laundry, meals and sleep, to set some boundaries around the consuming things in life like projects, activities and uproar, and spice things up with enough of your faves to keep yourself from becoming a dull boy/girl...

Yes, that is definitely the best way.

But, sometimes I forget... until, like now I realize that I am spinning my wheels. I am tired and cranky and tasks I usually find reasonable feel like tremendous burdens. Yuck.

You know? No one really likes me this way. Least of all me. And EVERYTHING gets harder in these seasons...

Time for some reading, some writing and some socializing. Not much of any of them (at a time anyway), but some. In my hectic life--not once I'm no longer busy. Because they just aren't as frivolous as they seem.

My kids are nearly adults... and I am learning this again.

No matter what your daily life consists of add in something you love: bake some awesome cupcakes (and share them with me!), color your nails, write down all the birds that land in your yard... whatever! Fit in a bit of what you love--investing that time pays off in energizing you for the rest!

Remind me of this next time I fall off the earth, would ya??

Heartbroken

2010-03-21T07:50:00.002-04:00

You may remember Baby Oliver. I am so sorry to tell you that he passed away this week.

He had heart surgery, and did ok in the surgery. His parents got at least one good report and then something went horribly wrong.

Please hold his devastated family in your thoughts and prayers.

1840 Part Two

2010-02-15T15:30:00.002-05:00

This is the post I'd have written first if I were a better person... sigh...

My son got his SAT scores this week and there is a crowd of people I should share that with--because of the help and support they gave. There were some notable stinkers who I really want to TEACH (not slap, teach!) about kids and their potential. In the beginning believers were few and far between--but remarkable--and in recent years there have been more and more.

I would start with our family--we have a large and diverse family who have always seen Tom as having potential. I know a woman with a son not unlike Tom in many ways whose family treats him... badly. We are lucky and I am grateful.

Then there was Jenn's OT. I went for quite a while with a stomach ache about why Tom couldn't zip a zipper. I had an OT in my house every week, but she was there for Jenn. One day I finally did ask and she was really helpful. Gave me some ideas, language to use when talking to professionals and strategies for building progress (lots of crawling... tunnels, etc...)

I would also have to thank the Down syndrome community because they taught us enough about living with disability that we were ready to go when Tom was diagnosed. The Advocacy Center in our town who teaches advocacy skills gave me the understanding of the systems that were available and how to access them--great allies to have!

The developmental pediatrician who evaluated him, and then took my tearful call when the literature she gave me said that my son had a sad and limited prognosis. She told me outright not to believe that. She said to use his language strengths to meet his other needs, build accommodations when needed and NEVER give up. She told me to think about what early literature said about people with Down syndrome and what they believe now... Be informed by the literature, then use that information to build the life he wants.

This developmental pediatrician moved away some years ago--wherever she is, they are lucky to have her.

I would thank Mrs. T. from one of the children's programs in our area. They used to offer little 'courses' about science: under the sea, geology, anmimals, etc. Tom loved that stuff so I put him in one that did not work AT ALL. He was with all girls and they made little pictures and crafts all class. I picked him up and he had this little wrinkle in his forehead that didn't go away for hours. I spoke with the program director who moved him Mrs. T's class because Mrs T. had an 'active teaching style' (aka WILD!) What a difference! Lots of facts, lots to do and see and touch, much to learn. Those classes turned a lightbulb on in Tom. Love of learning was ignited and has stayed with him.

While gradeschool was often frustrating there were always members of Tom's team who were believers--thank heavens! The naysayers were tough but never got the power they could have had because there were others asking questions or pointing out that he did always handle CERTAIN things fine... They kept the momentum going and I thank them.

I want to thank a guy named Bruce. He was part of a consulting group--two men who taught school and also did consulting work. They taught companies to use the potential of their worker and they taught presentation skills (probably among other things, but I really don't know.) I was at a presentation on presentation. They talked a lot about different types of learners and in one of the breaks I was having a conversation with Bruce and something he said made me think about my son. I mentioned that he was considered distractable, did terrible taking notes, etc, but then he would ace tests and frustrate his teachers to no end. He said, "Maybe he just can't produce output and take in input at the same time--see, no one talks to him when he's taking a test. Many people can't juggle."

Best thought ever! Perfect description for a kid he'd never met. Perfect timing too.

7th grade. When taking notes becomes very important. I took that back to Tom's team and that phrase set everyone free. He became one of the better students. A couple teachers even called him a favorite. (He does also have a very strong auditory memory which works in his favor.)

The school psychologist who evaluated him for his last triennial was amazing. She called me part way through testing to ask if she could do a couple more tests with Tom because she had never seen his learning pattern before--and she had already discussed this with him and he was interested too. I said sure! She gave us the best profile about Tom and his learning and thinking skills--and needs. She laid it all out for him beautifully. She told him he would have to manage things always to be successful, but that MANY portions of the world are wide open for him. She explained and answered Tom's questions--he's walked a little taller ever since.

He told me after that he always HOPED he would be ok, and BELIEVED he would, but now he thought he WAS.

Want to see your mom cry? Tell her that.

The junior high and senior high teachers in our district are also extraordinary. A lot of them read the paperwork and worry about having Tom in their class, but to a person they have all come around once they got to know him. He thinks his classes are interesting... I think they appreciate that. (He is a teenager and doesn't always make the best choices about everything, but they quickly learn the difference between a learning issue and a bad choice!)

And the special education teachers in our Junior and Senior High Schools are amazing. Tom got an IEP in 7th grade. The special ed teachers consult with his teachers and work with his accommodations. This means, among other things, that they sit for HOURS proctoring the exams where he gets extra time.

I spoke to one of them about that once and she told me that extra time doesn't help if a kid needs to know more, only if they need to produce more. And that's Tom. Processing time and the mechanics of production are slowed (though keyboarding is certainly faster than handwriting.) This teacher told me she LIKES working with Tom because when they put the accommodation in place he performs... She said that's what she went to school for.

And most of all credit goes to Tom himself. He keeps on keepin' on, no matter what people say to him, whether they work for him or against. He learns and grows and keeps going... Congrats Kid, You did good!

This is a score. Not a guarantee of an easy life or productive carreer. NVLD doesn't go away and I know that, but it is a step toward a carreer that interests Tom... and maybe a bit of a sign that some of the things we have learned along the way about NVLD have been right--at least in how they affect my son.

Wow! Some Folks are Just Too Clever

2010-02-14T07:29:00.000-05:00

My friend Jennica just sent this out, is it amazing or what??

1840

2010-02-13T07:00:00.001-05:00

My son got his SAT scores back yesterday.

I am so tempted to send it to a few people.

Like the teacher who told him when he was 8, "You're just not as smart as your mom thinks you are."

And the teacher who told the IEP committee in 4th grade that she "Did NOT believe in him... at all."

And the IEP team that told me that if he needed accommodations he shouldn't be in (their) academically challenging classes.

It feels very good to be right.

Oh yes it does!

R-Word Firestorm

2010-02-12T15:30:00.000-05:00

The first time I ever saw self-advocacy I had no word for it. I was in college and I was riding the bus into town to do some shopping and this young guy called someone else on the bus a r*tard.

There was a woman who had a disability sitting toward the front of the bus. She turned around and told him to shut up...

And that jerk looked at her and said, "You don't even know what that word means!"

"I do too! You're saying he's bad because he is like me. Well I am NOT BAD!"

The bully said, "I wasn't talking about you," and got off the bus.

But he was.

Insults are words that give people a little verbal slap. They are individual and specific.

Slurs are the big guns. Slurs not only insult individuals, but burn entire groups of people. They are part of every civil rights movement because they disempower. They refer to gender, race, religion, disability and more. Slurs are so powerful, so forbidden and so tempting... The possibility of hitting someone that hard makes us giddy.

So we create exemptions to make it OK to use the occasional slur. Here are some of the exemptions I have noted over the past week:

*It's OK if you're a Republican. (IOKIYAR)
*It's OK if it's funny--or satirical--enough. (IOKIIFOSE)
*It's OK if you're referring to yourself or your own group. (IOKIYRTYOYOG)
*It's OK in private. (IOKIP)
*It's OK if you call it Free Speech. (IOKIYCIFS)
*It's OK if you're really mad. (IOKIYRM)
*It's OK if you're not prejudiced. (IOKIYNP)
*It's OK if you didn't mean it that way. (IOKIYDMITW)

Have I left any out?

Do they work? Do any of these exemptions actually de-slur the words???

No, they don't.

It's just not OK. (IJNOK)

Picture from here.

Wrong Again: This Time About Palin and Limbaugh

2010-02-09T15:30:00.002-05:00

If you ever want to know how things are going to play out politically, ask me and then know it will be the opposite. Honestly, last year I was certain that President Obama would make more than a behind-the-scenes apology after his Special Olympics dis. And I was equally certain that Rahm Emmanuel wouldn't. And I certainly couldn't picture Sarah Palin tsk-ing a Republican...

And of course I was wrong on all counts. I should have learned, but I didn't.

This week I KNEW for sure that NO mom would EVER put up with the level of POISON about people with cognitive disabilities that Rush Limbaugh spit out on his program this week.

Wrong, wrong, wrongety, wrong, wrong!

Not only did Sarah Palin put up with it, she joined in. She called Limbaugh's vehement spewing of the r-word over and over again "hilarious" and "satire."

I never saw that coming.

Of course, I do realize that disability issues don't give anyone a lot of political traction--if we were that powerful or respected these issues wouldn't even come up. In fact I have mentioned this to everyone who said that Sarah Palin was using her son with Down syndrome as a political prop. I told people that Trig really wasn't going to get her any clout, but with him she might change the world.

And, I realize that Sarah Palin does have a tendency to jump into things she doesn't understand and then quit when they get hard: things like talking to reporters and governing Alaska, for example.

Still, I believed she would hold firm for disability respect because she is a mom.

I predicted that she and Rush would plot something out where he would say that he wouldn't ever be "PC," but would that he would defer to a mother's righteous rage.

Good thing I didn't bet money.

So how will this play out?

Will people see this as another episode of Sarah Palin quitting when the going got tough?

Or will folks see this as proof-positive that disability issues don't pertain to them, and as permission to carry on the traditions of disrespect like a bunch of playground bullies?

Or will people be horrified that when the chips were down a mom, any mom, chose Rush Limbaugh over her own baby?

Or was merely giving birth to a baby with a disability enough for everybody?

At our house we have tons of family stories about how we look out for each other and how we stick together no matter what, how will this event play out in the Palin family stories?

This time I'm not even going to guess.

Read all about this event here. And did you notice this?

Picture from here.

This and That

2010-02-07T08:47:00.006-05:00

Last week, Jennifer approached me to tell me things that Carly, a girl from her class, was doing after school, then she would take my face in her hands to say "And not me!"

Jenn was clearly feeling left out.

At first I would comment that Carly was just a busy girl... Then I asked if Carly was doing this with her family.... Finally Jenn made me understand that there was an afterschool club that she wanted to belong to.

So we asked and Jenn is now taking part....

Excellent bit of self-advocacy, wouldn't you say?

And now for some interesting links:

This post by Stephen Drake about Writers Logjam talks about an NVLD issue that my son runs into too... As do I sometimes.

Deborah at Pipecleaner Dreams talks about the heroes she has met while parenting her kids with disabilities.

And this letter from Deborah to professionals working with her kids should be read by every young professional.

I am really enjoying seeing the Think Beyond the Label ads around the net.

And in case you think people with disabilities are the only ones working to change the language and the message that the world hears about them, they're not!

Rush Limbaugh Brought Tears to My Eyes Yesterday

2010-02-05T15:30:00.003-05:00

Caution: Watch this video at your own risk. I heard it unprepared yesterday and it actually brought me to tears. I am only posting it because when I mentioned the incident to a couple people yesterday they didn't believe me...

My daughter has Down syndrome. I'm not a wimp. I stand up and handle lots, but the furnace blast of abject hatred in Rush Limbaugh's broadcast took my breath away.

On his radio program Limbaugh praised Rahm Emmanuel for calling liberal Democrats r*tards... and that was just the beginning...

Limbaugh yells the r-word over and over again, to ridicule liberals, to mock people with disabilities who deign to say "stop it" when something hurts them, and to deride the disability activists who met with the administration at the White House Wednesday about respect for people with cognitive disabilities.

Crass.

Cruel.

Limbaugh's tone leaves no doubt. He believes people with cognitive disabilities are nothing:

Beneath contempt... Completely valueless...

Emmanuel's incident was bad enough. Limbaugh's diatribe made Emmanuel look like an absolute saint.

Yesterday Limbaugh stated on his website that he was just quoting Rahm....

In admiration?

Or because he is 6?

Well Rush, as my mother would have said:

"If Rahm Emmanuel jumped off the Barge Canal Bridge would you jump in after him???"

Way to think for yourself AND take responsibility.

Sarah Palin said Emmanuel should be fired for his remark--a remark that took months to even hit the newspapers... She made statements about Rick Perry's blatherings in Texas yesterday as well...

She has herself a dilemma now. This guy is supposedly her buddy--and he hates her kid.

What's she gonna do? Not for nothing, but mom to mom? I'm hoping for a full-on mama bear smackdown.

If my family, my friends and loved ones have to swallow this bile, this better be a giant step toward respect.

Guest Post From 'A Frustrated Grandmother"

2010-02-04T15:30:00.006-05:00

This is our Oliver. Even before he was born, we were led to believe that Oliver wouldn’t do much. Thanks to all the medical technology available nowadays, we knew he had a good chance of having Down syndrome and we knew for sure he had a heart malformation. We were given a very gloomy prognosis. Weeks at the NICU, potential heart/respiratory problems , feeding problems, weight gain problem were all predicted. Well, he beat all the odds: 3 days at the NICU, no heart related problems, excellent nursing, good weight gain, good muscle tone, responding to all kinds of social interactions, good development, happy, never ceasing to amaze us, loved to bits by all of us.

He never needed an extra trip to the doctor’s office, just the well child visits covered by his parents’ health plan. He was a good patient... until Saturday January 23rd 2010.

You see, the only requirement Oliver had was to get a series of 4 shots during the winter months to boost his immune system and avoid getting sick from RSV, a common virus, which can cause a wreck in kids awaiting heart surgery. He had his November shot and his December shot, and stayed healthy.

Then, the nightmare began.

The company that Oliver’s dad works for decided to change insurance companies. The logical thing would be that all his medical needs would roll over, but his parents discovered that the pharmaceutical company would not deliver the shot unless they re-applied and got re-approved.

There was a delay transitioning between the two insurance companies, and a further delay with the pharmaceutical company apparently.

Before the process was completed Oliver had caught a common cold. His parents dealt with the cold the way the doctors told them to. They waited for the shot the way their insurance company and the pharmaceutical company told them to. They did everything they were told to do. And Oliver ended up in the hospital with RSV and pneumonia.

Why the delay?

I am sure all of those people could find Oliver’s information just by striking a couple of computer keys. It’s hard to believe they didn’t see that Oliver needed to be treated right away. Shouldn’t patients like Oliver have a red flag and get channeled a different way than people who aren’t in as much danger to speed up the process? Shouldn’t they take care of all the procedures instead of delaying it by making parents call doctors and rewrite papers?

All the information is available. Channel these urgent cases to employees trained to deal with the procedures right away, who can tell parents not to worry, that they are going to take care of everything, that they are going to call the pharmaceutical company so they deliver the medication right away, and that parents must call back if they don’t receive it by the next day.

You think it’s crazy? Why, one can get plane tickets instantly, or get approved for a credit card instantly, or have his/her information available on the net to anyone that wants it. These companies are being paid billions and billions of dollars, but the people that are paying them are being rationed and delayed when they need help.

Are you thinking that their employees are dealing with hundreds of requests and it takes time? Oh, but wait! What did Oliver’s parents received on the mail while Oliver was still in the hospital? A notification from their insurance company warning them that they “don’t guarantee payment for services provided while in the hospital,” that the company would have to determine the “appropriateness of the admission, length of stay and level of care and would have to review it against established criteria."

The timing was cruel. It added so much stress to an already horrible situation. Were his parents supposed to take him off the ventilator and take him home?

Didn’t Oliver deserve to be treated this diligently when his mom called requesting the approval of the shot?

I don’t even know whether my complaints will fall into the right hands. I am pretty sure the people who hold the top positions in these companies have learned to isolate themselves from us, the people that need their services.

We are blessed to be in a city with good medical care and to have Oliver home with us and healthy again, but still in so many ways, the system does not work:

*Tiny doses of lifesaving medications for babies should not cost over $1000.

*Somebody else besides the company making the $$ needs to make the decisions on what treatment is needed and how fast this treatment should happen.

*The process of changing insurance companies shouldn’t delay care.

*Companies we rely on for important medications need to be timely and communicate.

We need a system that hears the people and tells us: don’t worry we’ll take care of you.

~Ana

(Picture of a brown haired baby boy wearing a t-shirt that says Mommy and Daddy Love (heart) Me.)

Book Review: Late, Lost and Unprepared by Cooper-Kahn and Dietzel

2010-02-02T15:24:00.000-05:00

Late, Lost and Unprepared: A Parents' Guide to Helping Children with Executive Functioning by Joyce Cooper-Kahn, PhD and Laurie Dietzel, PhD is a breath of fresh air. It offers a positive and practical approach to the maddening issues of Executive Functioning Disorder.

The executive functions are our brain's coordinating and directing functions. They include such skills as planning, organizing, scheduling, initiating, emotional control and working memory, to name a few. These functions can be disordered in anyone and can be affected by upbringing, experience, maturity and disability.

When these functions work smoothly, life goes well; and when they don't, it just doesn't.

From what I have found, there are traditionally 2 approaches to executive functioning difficulties: The first is to write the child off as lazy. The second is to write long, dull, negative, theory-dense, strategy-thin, tomes about it.

Neither of these approaches has helped my family much.

This book breaks that mold. This book is short. It is divided into 2 sections. The first discusses what the Executive Functions are, how they affect our lives and how they are assessed. The second section explains the process of changing behaviors and then has a chapter about each of the 8 components of Executive Functioning.

Each chapter in this section includes explanations, short term strategies, longer-term approaches for reducing support/increasing independence, and advocacy tips for working with your child's school on the issue.

The book is designed so that you can go directly to the chapters you need. So if my son is having trouble getting started on activities, but no difficulty with impulse control you can read the one chapter and not the other.

Each chapter offers lots of strategies for change--the strategies are concrete and doable and the overall tone is positive.

For my son who has Non-Verbal Learning Disorder these issues loom very large and I have been sharing quite a lot of the book with him as I go. For my daughter who has Down syndrome many of the same concepts apply.

The book offers strategies to meet a variety of learning styles with somewhat of an emphasis on auditory prompts and reminders. For my son these are great as-is, for my daughter the auditory prompts in the book require simplifying (a modification I would expect to make with most things.)

I am finding this book useful for helping my son and daughter with their differing diagnoses, I have shared a few nuggets with my other daughter and have even claimed a few strategies for myself!

That's my idea of a helpful book!

Picture and to learn more about this book click here.

A Delicate Dance

2010-02-01T15:55:00.000-05:00

The relationship between someone with a disability and the people who provide their support can demand some complex choreography.

Since my daughter Jenn started at her new school this year people notice a difference in her ability to converse. She participates more. People notice that she takes more turns and clarifies more when people don't understand what she said.

What changed? Mostly, I think it's that she no longer has a 1:1 aide.

Now, don't get me wrong, Jenn had wonderful, well-trained, supportive aides. They were intent on making her more independent. Their presence made TONS of experiences available to her in our public school that she would have missed without them.

Yet, while the existence of a designated support person creates lots of opportunities, it also creates a tricky relationship. This relationship must be functional if the aide is to provide effective, individualized support. However, this relationship also turns the two--supported and supporter--into a "partnership."

A partnership is a social arrangement with etiquette and expectations. It requires give and take. It's both a useful and complex situation. (And it doesn't just occur in disability, executives and their secretaries contend with these issues on some level, as do couples.)When you're working with someone who is in partnership you are not just dealing with the individual--with either individual--anymore. You are dealing with the team.

I have met people in support situations who try to negate the "partnership" dynamic. I have met a deaf woman and a blind man who instruct people who are interacting with them not to address their support staff. Ever. While the desire to keep lines from blurring and to be addressed as an individual is understandable, it is awkward for observers and almost abusive to the support person to be treated this way. Consequently, this isn't the way most partnerships function.

Others try to treat their support partners more as friends. This works great if both people are compatible and can negotiate the leading-following nature of support--if not it gets ugly.

And if the supporter is an adult and the supportee is a child the partnership can't be anything but directive. But an adult with a cognitive disability is NOT a child. Providing adequate support AND self-determination requires both intention and attention.

With Jenn her partner status presented as a subtle waiting, a slight holding back and non-ownership of her role in conversation and other situations.

There are trainings and articles on the subject (like this one) but I don't think the questions of support vs. enablement, and codependence vs. interdependence vs. supported independence ever completely go away.

Parent as Support Partner.

When the parent is the support partner the complications of both the partnering and the parenting relationship get piled on even thicker.

When I am the support person my partner should be as self-determined as possible and I am there to facilitate.

When I parent I create the stuctures and expectations for my children...

My daughter needs both of these things, and it's hard to do them both at the same time.

Sometimes it's so easy to over-support because I do know what she's saying, because I know how hard some things are for her, because I'm her mother and KNOW what's best, because I don't have an objective view of her maturity or capability, etc, etc, etc... Beyond this, keeping my support-partner hat on all the time can be stifling for both of us--knowing when or how to remove it is really difficult.

When am I a parent? When am I a partner? And what if I need something?

Recently I turned down an evening swimming program for my daughter because I would have needed to swim with her. The opportunity to swim is good for her, but swimming after supper would disrupt my sleep which I just can't afford. The program director found a volunteer to swim with her... and I still feel a little guilty.

And when do you turn off the "because I'm the mom" mojo? I have seen parents of adults with disabilities subtly and not-so-subtly direct their adult child's choices. A partner who is also mom has undue power. Should she exercise that power?

Yet, NOT being mommish, being professional and detached doesn't work either. People need their parents to be attached and parental. At least sometimes.

And how does this work with the rest of your family members?

So far this is what I try to do: I try to engineer opportunities for my daughter to run alone--in big and small ways whenever possible. When she does need a partner, I work hard to set up situations that are healthy and effective. And when I am the partner I try to keep a balance between parenting and partnering. When things get out of whack I try to change.

How do others manage the partnership dilemma?

Picture from here.

Surprise, Surprise: More R-Word

2010-01-28T16:33:00.000-05:00

Yet another public figure resorts to maligning people with cognitive disabilities when the chips are down... there's a shock.

Two thoughts:

First, isn't it fortunate that Mr. Emmanuel chose the r-word and not the n-word or hate words about some other minority to spout when his intellect deserted him?

Political careers have ended over those.

Second, you really can't get absolution for slurs toward seven million Americans and their loved ones from Special Olympics. You just can't.

Especially without meaningful (painful!) penance.

Want absolution?

Do something that matters with the actual community you offended.

And...

Shut. Up.

You can read about the incident here, Special Olympics' response here, Arc's response here.

Please Pray for this Baby

2010-01-26T06:00:00.000-05:00

This poor little guy is having a rough week.

He was born in August and his mom used to babysit for my kids. He has Down syndrome and a heart defect for which surgery is scheduled.

But, that said, this little guy has done better than expected from the get-go. He was discharged from the hospital earlier than predicted as a newborn, nursed better than they said he ever would, and gained weight better than anyone thought possible, and in spite of our back-and-forth weather he hasn't even been sick...

Until now.

Through the end of December he received a montly injection of medication to prevent RSV (a potent, highly contagious virus responsible for the common cold and more.) A nurse went to his house to administer it to keep him out of the germy doctor's office.

First of the year his dad's company changed insurance carriers and the new company dragged their heels about whether or not the medication would be approved (the med costs $1000.)

Two weeks after the med was due the company finally approved the drug (though not the nurse to administer it.) The drug has been ordered, but takes a few weeks to come in.... so no January dose will be happening.

Saturday this sweet little trooper was admitted to the ICU in our local hospital... (his grandmother sent me this picture and said I could post it.)

And what virus has he been diagnosed with??

Guess.

Please pray for him.

(And forgive me, but $1000 doesn't seem like that much at this point....)

(Photo of a sweet baby boy with medical tubes in his mouth.)

Medical Profession, Heal Thyself. Now!

2010-01-24T14:45:00.001-05:00

When my oldest daughter was 11 days old she got sick. She was logey, wasn't feeding, was sleeping (which trust me, was wrong.) She didn't have a fever, but she just was not right. I called the doctor's office and the person on the phone told me she understood my anxiety being a new mother and all, but I should just hold tight and try to give her more fluids, especially since our own doctor was off that day.

A couple hours later I called them back and that phone lady heaved a heavy sigh and said, "Okay, you can bring her in if you can't handle things."

I packed her and all the stuff you have to pack to mobilize an infant. All the while telling myself that I was NOT being stupid and I was doing the right thing, and even if I WAS wrong it was better safe than sorry, and d---mmit I AM handling things!!!! This IS handling things....

We were with the pediatrician for about 5 minutes when he walked us over to the emergency department of the attached hospital for a spinal tap. She was admitted for meningitis...

And when my youngest daughter was having seizures in the arms of a neonatologist (who is also a dear friend) that same office staff reluctantly agreed to see her only after I insisted... She was tested.

Was she seizing? Of course she was...

Our doctor changed office shortly after this, which is the only reason we are still with her.

All of that is ancient history of course.

Or so you'd think.

Last week my friend was talking with a mom she knows who is in her 40s. This gal took her 10 year old grandson to a local clinic. This mom/grandmom is petite, looks really young (bless her) and is from a lower SES... She was dismissed out of hand by the physician until she finally said something they understood as meaning 'this wasn't her first time around the block.' Only after that did they really look at the boy. And yes, they found some real problems that needed real treatment.

The doctor then apologized and said, "We just thought you were another teen mom...."

Now I would have pointed out that it was impossible for a 16 year old mom to have a 10 year old child, but this gal is smarter than me.

She said, "What if I was? What about my age would mean that my sick kid wasn't sick???." She told them outright that they needed to treat people better.

And yesterday... yesterday takes the cake.

My next door neighbor's daughter (who used to babysit my kids!) was over and her 4 month old son (who also has Down syndrome, interestingly) was sick. The mom called the doctor to say he was having trouble breathing. The on-call told this first-time mom that he was fine and they didn't want to see him unless he had a fever.

They dealt with that for a little while and then asked if I would come look at him. (I'm a nurse though I work with adults--old adults!) He didn't have a temp, and my stethescope was bigger than his entire body, but he was really struggling to breathe even when asleep... I said I thought I would want him seen if he were mine, and suggested calling the doctor's office again. I said this time tell them you want him seen--don't ask, just tell.

They were sent to an ambulatory after hours center--who called an ambulance. Today he is in intensive care on a ventilator.

I know everyone needs healthcare and no office can see everyone every day. Some kind of gatekeeping is probably necessary, but must it consist of profiling and preclude listening??

There just must be a better way.

Ideas??

Picture from here.

Unexpectedly Effective Advocacy: The Success-Experience

2010-01-18T16:44:00.002-05:00

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.

My Aunt Mary Ann, my father's oldest sister lived in our town when I was growing up. She would always say that she was my 'spinster, librarian aunt' which use to upset me to no end. It was true. She lived alone and she was a librarian, but she was also brilliant and engaged and vital, and words like "spinster" used to offend my spirit when I was young.

I would spend about a weekend a month at her house (overnight!!) Not only would she have picked out the best books in the world for me, but we would cook and sew and work on projects and snack on cranberry juice or tea and homemade cheesecake-brownies or lemon bars (or chocolate chips right out of the bag!) And she would talk to me about beliefs and ideals and her philosophies on education and more.

One weekend nothing we touched worked--sewing projects wouldn't go together, we ran out of supplies for some other project right in the middle, and the recipe we were experimenting with for dinner went up in flames. We were both miserable.

On the way to Don and Bob's (One ground round-ONE!), I said that I was surprised that we were going out.

She smiled at me and said, "Terese, what we need now is a success-experience."

Apparently this was not just her idea, but something written about in education articles at the time. The idea was that to be effective you sometimes need to prime the momentum pump with something positive.

Dinner was delicious, and I had to admit the weekend turned around--the next day's projects weren't nearly as disastrous.

This little nugget of wisdom has stayed with me ever since and it is surprising how helpful it can be--in life and in advocacy.

When my kids were little and things would go sideways, ramping things back and playing a game we were all good at, or taking on a task we knew we could conquer would put us back in the mood to try something more challenging.

It works at school and with programs as well. My friend's son demonstrates some challenging behaviors at school. When the classroom team is overwhelmed and jumping to all sorts of drastic conclusions my friend and I often brainstorm about how to make things better. At one point we chatted about success-experiences and she decided to try it. She listened hard to hear what the teachers were saying was their biggest problem. Then she applied her know-how to that problem--just that problem.

She offered the team strategies for addressing that problem. She created visuals, provide documentation and whatever else it took to iron out this one issue. The team was not exactly receptive to her ideas at first, but when they applied her strategies and they worked, really good things began to happen.

The team became energized and started believing that they could be successful with her son. And my friend's credibility as contributing team-member was enhanced.

This is something we both use as a first-line strategy nowadays.

I think it is more effective if you pick a high-impact success (a fulcrum), but if things are bad enough start with ANY success you can get.

The same is true in systems advocacy. Little successes set the stage for bigger successes. Getting simple legislation passed creates relationships within the disability community and with community leaders that can lead to bigger projects and bigger successes.

(Black and white pictue of Don and Bob's restaurant with lots of vintage cars in front from here.)

Book Review: Seven Days at Oak Valley by Ruthie-Marie Beckwith

2010-01-16T07:05:00.000-05:00

Well, my copy of Seven Days at Oak Valley arrived in the mail yesterday afternoon and I picked it up, thumbed through it and thought I would take a minute to read the first couple of pages.

It's a murder mystery set at an institution for people with developmental disabilities in 1978. And the main character--the one who figures everything out--has a cognitive disability. The author, Ruthie-Marie Beckwith is a long-time disability rights advocate.

Before I knew it I was on page 50 and there had already been 2 deaths (with hints of others), a couple of scandals and political tangles were afoot, we've seen glaring examples of institutional living and abuses of power, and we have met a handful of compelling characters.

Then I had to feed my family and drive people places...

I am resisting (with all my might) the urge to check the last page to make sure the characters I like make it through to the end.

I don't know how it is going to end, but it's pretty engaging so far!

The Disability Blog Carnivals is UP!

2010-01-15T18:25:00.005-05:00

Cheryl is hosting a blog carnival with the theme Holidays. Go on over to see posts of varying holidays and perspectives.

If you are interested in hosting a future Disability Blog Carnival leave a comment for Penny. You can pick a theme or not...

Holiday Gifts (For the Blog Carnival!)

2010-01-11T09:34:00.006-05:00

At our house holidays are wonderful. We like the food, the clothes, the decorations, the gatherings, the music...and presents of course, we like those too!

In fact we hate the holidays to end. Jenn told me yesterday that she wants Christmas music back--and this after listening to the radio station that only plays Christmas music, at top volume, every moment that she was home, from Thanksgiving until last Sunday when they went back to regular music. (Personally I am ok with a break from the 75 versions of Frosty the Snowman!)

For us the biggest holiday challenge is gifts for Jenn. She is 16, but a lot of the things 16 year olds like do not appeal to her at all.

She is not close to driving, likes new clothes but doesn't LOVE them, and has no interest in video games or MP# players because they really aren't all that accessible for her (though if we recorded Christmas music... wish I'd thought of that before now!) She doesn't really understand gift cards until she is standing in a store...

She does like movies, but she has tons because that's what folks get her. She likes CDs and books (but at her reading level without being too babyish can be tough too.)

Frankly, she would love toys, but toys would not help her grow up. And she needs to...

She isn't picky, and thankfully she is mannerly, but people want to get her something she will like and be able to use.

This year she got some clothes from her sister and her aunt who are fashionistas so that was good. She got a movie and some books that she seems to like. She got some fancy bath items. She also got a game (not quite a toy, but still fun.)

This year was actually pretty successful.

Her favorite gift?

A picture of Zac Efron to hang in her room (from very cool grandparents!) She explained to the newbies in the house that he was in the movies High School Musical and 17 Again.

"And he is mad HOT!!" she screamed.

I admit watching people's reactions when she tells them about it is kind of fun.

And I know she is not the only teenager to have a poster of him in their room.

Win, win, win!

I am already writing ideas down for next year...

(Black and white picture of a 1951 Christmas tree from here.)

Disability Simulation Exercises Promote What?

2010-01-07T17:00:00.004-05:00

I have a very uncomfortable relationship with disability simulation exercises.

Don't get me wrong, I want to like them. They are always well-intentioned. Designers always hope that getting people familiar with the sensations, experiences or equipment of disability will make them more welcoming and understanding of people with disabilities in their lives.

The idea seems sound and it should work, yet most of these exercises--from riding in wheelchairs, to wearing blindfolds, to puppets and role-plays and beyond--just seem to make most participants feel sorry for people who live with disabilities everyday and relieved to get back to their own lives.

Pity and relief are not what I'm aiming for.

I have been puzzling about this for a long time. I know that information alone does not change behavior, and I believe that making concepts experiential improves the likeliehood of student change... Yet these programs just don't teach the things I want people to learn.

For a long time I thought it was the "how" of the experiences that sent folks down the wrong road--maybe things weren't multi-sensory enough, or structured enough or something. But now, I think it's the "what" of the activities that misses the mark.

I have recently realized that disability simulations create the experience of changing from not having a disability to having one rather than the experience of day-to-day life with a disability. Consequently, I think participants get a taste of the emotions that accompany really big changes in our lives. Participants learn that those feelings are what it's like to have a disability.

Well, the emotions of 'big change' certainly can accompany new disability diagnoses (and can be intense.) There can be fear, anger, embarrassment, depression, denial, bargaining and more. For a while things can be utterly frustrating and baffling.

Many people who acquire disabilities through age, illness or injury go through these feelings. Parents whose children are diagnosed with a disability may experience them as well.

But--and here is the kicker--those 'big change emotions' are temporary in disability just like they are in life's other 'big changes.'

And over time most people respond to disability the same way they respond to other big changes.

They adjust.

Eventually people go from saying "I want my old life back" to "Now I do things this way."

Disability simulations just don't impart that perspective. So how do we create that?

What can we change or add to our sensitivity and awareness programs to make the message of understanding stronger?

Here is a link to a new on-line awareness game. (h/t Media Dis n Dat)

What do you think?

See here for another perspective.

Here's To a Grand New Year

2010-01-06T08:59:00.006-05:00

I am having a totally spoiled moment. I am sitting on my couch eating my breakfast of oatmeal with bananas and walnuts AND brown sugar (I usually add in some vanilla yogurt instead. But bananas and yogurt together is just like requesting a migraine, and who would do that? So I must have sugar.)

I am looking out at white snow tipping the black trees against the brightening sky and thinking about writing.

Not writing. Just thinking about it. But that's more than I've done in a couple weeks so it feels like progress to me.

So first of all, Happy New Year to everyone in the blogosphere--In hope your year is lovely in all the ways that you hope it will be, and more.

If you are looking for a New Year's reflection, I recommend this post from Ali Edwards.

Also, I am trying something new for accessibility for this blog. I have added Odiogo. You can click the button at the top of each post to hear it read, or you can click the icon in the right column and subscribe on your ipod or whatever... This is an experiment. I hope it will be helpful for people with vision or reading disabilities. Let me know what you think.

I read this article today on Media Dis n' Dat. I think having a suite for families traveling with children with autism is a good idea. I think it would also be marketable for families with someone who has Alzheimer's disease.

I am not resolving to post more because that is a guarantee that I won't, but I will try...

Happy 2010!

(Oops, was going to post a picture, but my camera and memory card just left with my daughter... So I am posting this video made by kids who grew up on my street, hope it makes you chuckle.)

More on the R-Word

2009-12-10T06:30:00.001-05:00

You may already know that Sen. Michulski introduced legislation to ensure that future federal legislation uses person first language a couple of weeks ago.

What you may not know is that this story has been playing out in my region as well. This summer one of our county legislators was recorded calling another an 'r-word' during a roll call vote.

Nice, huh?

In early August there was a cross-disability press conference and a protest at a meeting of the County Legislature where I spoke. Here is what I said:

Recently someone in this chamber was recorded using the r-word... and sadly, no one was recorded saying, "Hey, we don't use that word here!"

There is no minority who would accept this sort of disrespect, and the disability community should not have to either.

It was a mistake, I know. And before my daughter was born with Down syndrome I can't say that I "got" disability either. My life experience has taught me a lot.

Fortunately you do not have to wait for life to gift you with disability for you to become aware and respectful of disability issues.

There are many ways you can learn about disability and many actions you can take to improve yours and our community's awareness:

*You can seek training from any of the many agencies that support people with disabilities in our area.

*You can support agencies and people with disabilities personally and through legislation.

*Most of all, you can get to know people with disabilities. Without them your knowledge of the strengths and needs of our community is incomplete.

If you follow these steps a mistake like this will never happen here again, and the disability community and those that love them will thank you.

In closing I would like to quote Eunice Kennedy Shriver who founded Special Olympics and died yesterday. These are the kinds of words we want to hear from our leadership about disability:

"You are the stars and the world is watching you.

By your presence you send a message to every village, every city, every nation.

A message of hope.

A message of victory.

The right to play on any playing field? You have earned it.

The right to study in any school? You have earned it.

The right to hold a job? You have earned it.

The right to be ANYONE's neighbor? You have earned it!"

Thank you.

This week the Monroe County Legislature is slated to introduce Person First Language Legislation stating that future legislation will be crafted using person-first language. I wasn't able to be there last night and I don't know what happened.

I'll let you know how that goes!

(The video is a bit long, but really worth watching!)

Bits and Pieces

2009-12-09T06:30:00.002-05:00

To start with, a funny story: Jenn was looking at a doll the other day. It had kind of a thick body and a screw that held it together right in the middle of the abdomen so my daughter thought there must be batteries and asked me how to make the doll talk. I looked the doll over and it didn't have batteries after all and I said she wasn't a talking doll.

Later I heard her tell her sister about the doll. She said "That doll doesn't talk. We need to get her a dynavox!"

(FYI: a dynavox is a voice-output communication device. Several of Jenn's friends use them.)

New York Times: Gary Presley, author of 7 Wheelchairs, blogger and FB friend had this essay in the New York Times last week!

Disturbing Fact: New York has over 6000 people on its waiting list for adult services. Check out your own state's statistics and sign the end-the-waitlist petition.

New blog: Check out this new blog by Penny Green. She is a mom. Sadly, her son with Down syndrome died 20 years ago from heart complications. She is from the UK, and an activist for folks with Down syndrome--especially those with heart issues. Stop by--and like all of us, she loves comments!

Finally: What do you make of this?

The picture is of my daughter wearing paper sunglasses--don't know why... Funny, my sister-in-law didn't send me the pics of her wearing them... :)

Teaming for Success

2009-12-01T19:00:00.001-05:00

OK, I'll admit it. When I take my car to the shop I have a brief conversation (what's wrong?), leave the keys and head home. And when I go to pick it up I ask almost no questions, nod a lot at whatever they tell me, pay and leave.

I know very little about cars, expect the professionals just to 'do their job,' and I'm out of there!

My husband, on the other hand, has made it his business to know a lot about cars. He chats with the mechanics before, during and after any work. He discusses products and possibilities and knows exactly how the decisions made in the shop should play out on the road.

He listens, he learns and fits all the advice and information he gets from the car mechanics to figure out what to do for which car, and when to do it as well as which cars to keep and which to replace. He incorporates all of what he learns into an overarching transportation plan that he has in mind.

And who do you think gets better service from the mechanics?

Me with the 'dump and run?'

Or my husband who makes every mechanic part of his car care team?

My husband. Hands down.

Because I throw money at car problems where he builds a relationship and a team...

Teaming up with various professionals and experts is an incredibly useful skill for parents of kids with disabilities and people with disabilities to learn. It's an approach that allows people to make full use of the expertise and skills of others within their own plan and vision for their life.

Teaming makes the professionals you work with more effective as well.

For example, your child's OT will be much more successful if they hear from you that her hand movements are attempted signs, not "random, bilateral waving movements, possibly for stimulation." (Yeah, she was signing 'milk.' She was thirsty.)

And, your physician will be able to do more for you if you DISCUSS the medications you don't intend to take with him. Rather than just not taking them. (Yes, I am talking to YOU!)

Teaming, done well, is a good approach whether you are working on health, educational, transportation, legal, community participation, employment or some other issues.

Tips for successful teamwork:

* Engage and stay engaged. You are the team leader and you "hold the vision," do not let go of this. Set the tone of teamwork from the beginning. Give input, strategize with people and participate in carrying out the plan. Do not disengage, and do not sabotage the plan. When things aren't working, tell the team first to allow for revision.

* Communicate openly. Add your meaning to discussions, give more or new information, keep people oriented on your overall vision, disagree--respectfully and without anger.

* Recognize and set boundaries. Everyone working with you is a team member, but not every team member needs to attend formal meetings--in fact, many can't or won't. This is fine. People's association with you can be enough to create teaming. Respect people's time and understand that some associations are time-limited or situation-limited. (For example, the car mechanic is only 'on the team' when the car needs service--and only my husband will talk to him/her... ever!)

* Respect each person's expertise. Let them do their job WHILE contributing your own info. Respect your own expertise as well. Expect to contribute.

* Diversify your team. New ideas, possibilities and perspective come from NEW people. (Read Never Eat Alone by networking guru Keith Ferrazzi to learn more about this! Chapter 11) Diversifying should be a thoughtful process, but it is necessary. You already know and have access to the resources of your closest friends and family. Grow to grow.

What other tips do you know?

Picture from here.

Advocacy is a Lifestyle

2009-11-23T16:32:00.000-05:00

My kids have a friend who has trouble with anger management. When things are fine with this kid, they're fine. But when he gets angry, he loses control--and this is a serious problem.

Not too long ago my daughter told me that this young man was no longer going to have this problem. He had decided. From now on, no blow-ups. My kids were very upset when I didn't seem convinced.

"You just don't believe in him!" they said.

"Actually I do," I replied, "but I don't believe in his method."

My kids were mad, but finally asked what I meant. I made an analogy (I'm like that!) I asked them if they thought I could bench-press 200 pounds... they of course said no and rolled their eyes.

"But what if I tell you that I have made up my mind that from now on I would be able to??? Now can I?"

"Ummmm, no."

Of course, there IS a way I could become able to lift heavy weights, but willpower alone won't do it.

If I want to be a weightlifter I need to have a habit of daily lifting--starting with the small weights, and this guy needs to start a habit of dealing with frustrations--also starting with the small ones. (And I do believe he can do it!)

Well, some people approach disability advocacy the same way this young man wants to manage his emotions.

These folks see "ADVOCACY" as a specific set of tools and a linear process that a person implements only during certain (bad) events.

They believe that advocacy begins and ends when a problem arises. They look up a bunch of laws, march in, beat the opponents with a stack of regs, and walk away. They don't like advocacy because battles are painful and draining. While they succeed at punching a hole in the armor of entrenched systems, it results in a lot of turmoil.

While I believe in full-blown legal advocacy when the situation calls for it (and have fully used it when necessary)I also believe strongly in advocacy as a daily building process.

I hold the belief that disability is fine and does nothing to diminish a person's value or rights.

I assert this belief in big and small ways every day, and my little relationship-building-while-I-advocate steps are every bit as important to my child's success as anything that was ever written in a lawbook.

If I am effective sometimes I can prevent the big battle (without capitulating either,) And when I must have the big battle it's these smaller, more connective efforts that help the battle-scarred team become functional...

It's almost impossible to succeed by just forcing a system to do what you say and walking away.

Getting to know your school's systems (can't just stop at the PTO, I have found!), engaging in your neighborhood, speaking up in the check-out line, writing letters, fostering relationships, correcting misinformation, writing e-mails, helping people understand your child or yourself, blogging, nurturing relationships with other people with disabilities and their families (even when there is no trouble), and more, all count.

Each daily effort not only makes you a stronger advocate it strengthens your child and their position in the world.

Picture from here.

Curing Down Syndrome?

2009-11-21T07:30:00.001-05:00

This is a picture of my daughter after her new haircut--she had enough cut off to make a Locks of Love donation.

By now I am sure you have heard the news about the Mouse Study on Down Syndrome.

Actually, Dr. William Mobley spoke about this study at the National Down Syndrome Congress Conference last summer in Sacramento. Dr. Mobley gave a really clear explanation of the study and, probably because he was speaking to families, introduced the researchers who were working on the study.

The science is fascinating... The ramifications--to me anyway--are unclear.

So, will we be medicating our daughter???

Not anytime soon.

I REALLY do not believe in taking new medications--especially new medications based on new science. After all, Hormone Replacement Therapy, Fen-Phen and Thalidomide all seemed like good ideas at the time.

I will, of course, make exceptions when something is life-threatening, but a cognitive delay simply isn't.

And Alzheimers? Not an issue for another 30 years or more (and it's only a risk factor.) By then, Alzheimer's may well be cured for everyone--this study may well point the way.

So we will wait.

This may present some new and interesting opportunities, time will tell.

But there are a few things this is NOT:

**THIS IS NOT URGENT

Cancer needs a cure. Down syndrome? Not so much.

**THIS IS NOT AN EXCUSE TO ACT LIKE A JERK

One of my friends has already been berated and labelled irresponsible and negligent by another parent for expressing her belief that medicine does not hold the answers for her son.

Negligent and irresponsible for having a different point of view about a medication that does not even exist yet???

REALLY???

One woman who really wants me to medicate Jennifer won't immunize her own son...

Yet I'm not calling her names...

Rein it in, parents! LEARN from your experience of having a child with a difference. Diversity and choice are good. And, it's disrespect (far more than any medical condition)that turns a mere diagnosis into a "handicap."

**THIS IS NOT HELPING DISABILITY ACCEPTANCE

I fear that the implication that we'll just eliminate differences like disability rather than accept, adjust to or welcome them is not making the world better--for any of us.

Sigh...

For somethng truly beautiful, read this.

Don't Dis Ability

2009-11-19T16:03:00.006-05:00

Back a few years ago, B.B. (Before Blogging!), I was chatting with an acquaintance who was passionate about AIDS/HIV issues. She told me about this thing called blogging and that she was thinking about starting one. After our conversation I went home and set myself up to blog too.

I ran into this woman recently and asked her how her blog was going. She told me she had never actually started one.

Turned out that she had gone home after our conversation and talked the whole thing over with her husband (a web designer.) He had told her that she really needed a website before she started a blog, and before she could have a website she would need to be competent with HTML, and she would need a marketing plan and several other skills and THEN she could write a blog.

Her hubby had told her that YES, she was a pretty good writer, but writing is "just the tip of the iceberg."

She did try her hand at learning some of the HTML stuff, but found it complicated and uninteresting so she had stopped.

So, yesterday I wrote my 200th post and she didn't--despite the fact that I also only had the "splinter skill" of paragraph construction starting out. (No, I did NOT mention this to her!)

The difference is that I VALUED my splinter skill and looked for ways to turn it into something, rather than DEVALUING it because it didn't come in a package with every other skill known to humankind.

And the fact is I have learned several new computer skills from blogging... way more than I would have without it.

How many valuable and exciting things are nipped in the bud by this sort of de-valuing?

Lots. For everyone, I'm afraid. More, if for those with a disability.

When my son was younger there was someone in every team meeting I ever attended who wanted to exempt themselves from dealing with him, or deny him opportunities--in spite of his considerable language-based skills--because of the things he could not manage.

I spent years taking the skills the school labelled as "splinter skills" (and therefore meaningless) and re-framing them as "bridging skills."

I was constantly pointing out that things like language skills, which didn't interest his math teachers, could be used to improve his math skills...

The same with my daughter. She has great decoding skills and comprehension lags, so she isn't actually reading, according to some folks.

Yet, I find that when I am listening to her read and her understanding derails, if I hear her mention something like a character's purse, for example, I can draw a purse for her (adding a visual to her de-coding) and she will orient immediately to what she is reading. Her 'meaningless' splinter skills are the bridge to comprehension.

My friend's son loves to 'show off' according to his team. If his language skills were stronger they would call it 'performing.' My friend, on the other hand, works to use his love of an audience combined with his strong visual skills to insert story elements into his routines... thus turning his 'showing-off' into communication or story-telling.

Another friend, whose son is not diagnosed with a disability "has such great ideas, but he's so immature," according to his school. First of all, he is 17--of course he's immature! But wouldn't implementing one of his ideas be a great way to increase skills and maturity?

Reject the rejection! Embrace yours and your kids' skills--make bridges of those splinters--and see where they will take you!

Picture from here.

Post # 200

2009-11-18T17:00:00.000-05:00

OK, I just have to get this post over with. I have put so much pressure on myself that I can't post at all because my 200th post should be SPECIAL, don't-ya know?

Forget it! I can't be that special. So here is a picture taken after my son's play this weekend.

This costume kills me. All weekend long I told him he reminded me of a turtle... so I found this picture of the turtle I meant:

He looked at it and said "Duck and Cover!" just like they did in the movie.

He's seen the movie.

In Social Studies.

Yes, my childhood is now being taught in history...

This is just wrong.

(Wikipedia says this movie was produced in 1951--I was not alive then, yet I remember seeing this cartoon as a child... strange.)

A couple of other bloggers have celebrated blogglestones recently. Congrats to Terena at Gravity Check who celebrated 111 posts this week, and to Louise at Output, Comprehension and Visualization who is celebrating her 1st!

Picture from here.

My Hopes for Glee

2009-11-14T09:20:00.004-05:00

I have such a mixed bag of feelings about the TV show Glee... My two older kids have always been vocal music-theater-show choir folks, or La-La's as they are called 'round here (the instrumental musicians are called Band-o's, fyi.) They love the show. They love the music and the mash-ups (where they blend 2 unrelated songs & styles into one performance), they love the dance and they LOVE the drama.

I have gotten into watching it with them. The music and dancing are great and the stories have led to lots of conversation.

This week Glee put the whole cast in wheelchairs and introduced two characters with Down syndrome... While the ideas of team-building and of walking a mile in someone else's moccasins aren't totally awful, I had my issues. Naturally!

First, disability simulation exercises usually lead to more pity than understanding (you can tell by the things people say when they are over--more about relief and feeling bad for people, rather than about empathy and feeling more like people with disabilities.) Secondly, having seen professional wheelchair dancers, the performance was kind of one-dimensional...

My daughter saw the show before the rest of us and her concern about wheelchair issues took a definite back seat to her anxiety about what was going to happen between the cheerleading coach and the young teen with Down syndrome.

My son, the actor and I have been discussing whether an actor who can walk should portray a wheelchair-user. He points out that acting is all about portraying people you aren't... He pointed out that he's played a farmer, a skeleton, a soldier, a student, a drunken businessman, and several variations of old men, and some really disturbing evil characters. He's only played a teenager once and that was a boy from the 1940's.

We have talked about blackface, about the percentages of disability in the real world vs. that on TV. And the percentages of average-looking people in the world vs. those portrayed by Hollywood...

As I say the conversation has been interesting. And unresolved... but that's how discussions with teens are!

Interestingly my blog-friends who use wheelchairs hated the show (see here) the bloggers who have kids with Down syndrome liked it (see here and here.) As Wheelchair Dancer points out, a consistent disability message is hard to find, and heirarchical thinking is often accepted--or even promoted--within the disability community itself.

I myself think the show has potential for disability acceptance. They are willing to 'go there' with tough subjects (as evidenced by the ongoing story about the gay student and his father... and all the teen trouble that's rampant, etc) and they don't lose their sense of humor or style as they do it... Kids LIKE the show!

IF they could come to understand that they don't have the whole picture of disability and look outside themselves for info, I think they could be awesome. Some say it's a big IF... we shall see.

To start with:

*They could have the teen girl with Down syndrome pay back the friend that bought her a cupcake--or better yet, lend her some $$. She should be a contributor, not just a recipient.

*They could introduce the kids to some REAL dancers who use wheelchairs.

*Lots could happen with the teen with Down syndrome... and with the big sister (though even if she must live in a nursing home she should still be and about, unless she's sick...) They also need to watch the 'childlike' stereotype.

*They would need to stop the remarks about "Never being able to get up... Never not be disabled... etc..." Gag me. Pity--for self or others--is not a viable life-strategy.

*They could also play up the realizations that many of the kids voiced that using a wheelchair lowered their status. Should it?? Um... no... but it does. That could be explored.

*There is lots of story potential about the difference between accommodation and unfair advantage. It is tricky stuff, but they worked that in with their "Diva-Off," I think they could handle it... IF they got some real input from the disability community.

A lot of this could be woven in with the other story-lines... And finally...

*How's about a Glee-ADAPT mashup??? :)

Just my thoughts!

Advocacy Skills: You Too Can Give Testimony

2009-11-04T16:28:00.006-05:00

Yes, you. Yes, really! Trust me! :)

As mentioned in my last post I gave testimony at the NY Senate Finance Committee Budget Hearing on Monday. I learned to give testimony during my Partners in Policymaking training and I learned even more Monday. I traveled with a friend of mine who was scheduled early in the day and I was scheduled later (even though I signed up before she did!) I ended up being the last speaker of the day so I pretty much heard EVERYTHING. It was a long day.

First, the basics: Many agencies or branches of government hold hearings or have opportunities for the public to speak their piece. I have attended hearings hosted by the OMRDD, Department of Education, County Legislature and more. You can learn about these opportunities from connected friends (get on an e-mail list or 7!!!) or from agencies' web pages. Regional budget hearings are a new innovation in NY--a very positive one, I think.

Hearings are held when a group or agency wants to hear from the public either to guage sentiment, gather information or demonstrate the existence of support/dissension on a topic. They will announce the hearing and often include a list of topics they are interested in. You don't need to address all of them--just what interests you.

The announcements also include things like how much time you will have to speak, whether or not you need to register and whether they want copies of your testimony (bring some anyway and give them to the clerk even if they don't formally request them.)

Giving testimony is really a good type of public speaking--you usually have only 2-5 minutes and you are EXPECTED to read it.

People generally begin by thanking whoever they are talking to, introduce themselves, give the body of their thoughts, and end with a call to action (telling the panel to either do something or stop something.)

After listening to way too many folks talk the other day I have some other pointers to add:

First a RULE (NOT a pointer!!!) Stay within your allotted time. Write your testimony, practice it and edit it until it fits. Do NOT go over your time. EVER!!! If you do I want you to imagine my pointy elbow in your side--that's right, a little virtual negative reinforcement for you. Because I care.

I know--you're passionate. I know--you have important things to say. Guess what?? Everyone there is passionate and all the issues are important. Once time has been called, no one cares about your ideas or issues anymore. They just want you to go home.

That is not the impression you are trying to make. Cut it!

To their credit the Senators remained pleasant and engaged all day. I can't imagine how. I did not catch any of them dozing or rolling their eyes... very impressive, actually.

Be memorable. There are a few ways to do this. You can incorporate some short, quotable statements or sound bytes in your talk. Don't overdo this or you will sound like an advertisement rather than like testimony, but make your take home points stick with folks if you can.

Tell your story. An agency director I know elected not to go to the hearing because he thought hearing from parents would mean more. In retrospect, I think that was a good call. There was one mom who told the heartwrenching story of her child's behavioral needs and the services that rescued her family. She had the whole room wiping their eyes--I would not want to be the legislator who cut her program! I don't even know if she ran over time, that's how engaging she was.

Connect to your issue. Use word pictures and examples. Try to touch BOTH your listeners' heads and their hearts.

Numbers. Now I admit I hate numbers, and it is likely that people on the Senate FINANCE Committee don't hate them as much as I do. Yet, sitting in a room hearng list upon list of numbers kind of makes them all run in together. Give a few salient numbers. Give your numbers some context. Someone talking about libraries pointed out that their user numbers were greater than the attendance at the Buffalo Bills and Sabres games... And even I still remember it.

Delivery. Speak with some enthusiasm. And as much clarity as possible. Edit enough that you don't have to rush. You don't need to be a master-performer, but enthusiasm and blahness are both contagious. You want to generate enthusiasm (Enthusiasm doesn't just mean being happy-happy. Passionate frustration works too.)

Hyperbole. I really didn't see this Monday, but I have at other hearings. Don't be over-the-top in your manner or descriptions. You are trying to be credible, not generating market-share for your talkshow. Be compelling AND credible.

Structure your statement so that you can cut out pieces if your point has been made repeatedly or if they decide they need to shorten everyone up for time (though if they just turned off microphones afer time was called this would not be necessary!) Journalists recommend the "inverted pyramid" style of writing. I don't do that, but I do organize things in chunks I can remove if needed.

Practice what you have written. Fix things that just don't sound right. I wrote about dismal employment rates, my mouth really wanted to say 'dismal unemployment rates.' After flubbing it 4 times I changed it... it was SO much easier that way!

Written testimony. Bring copies of your testimony--and other supporting documentation--for the committee even if they don't ask for it. And include contact information. This way they have something to read later if they are so inclined and if you are cut short they still have your whole spiel to consider.

Change it up. If I go to another hearing about this I will add different points (like, no one mentioned that Medicaid dollars all get spent in the local economy...) Speaking to the same senators you would want to set a familiar tone, but not be totally repetitive.

Supersize it. If you spent the time writing testimony it should be USED! Blog it. Put it in your group's newsletter. Turn it into a letter to the editor... send it to legislators who weren't there... Come up with your own ideas on this. Do not ever waste efforts!

It isn't difficult... it is over in 2 minutes... it can make a difference. Try it!

This picture is my friend Jackie ready to give her testimony.

My Testimony at NY Senate Finance Committee Budget Hearing

2009-11-04T08:00:00.000-05:00

On Monday I gave testimony at the NY Senate Finance Committee Budget Hearing in Buffalo. It was a long and interesting day... I will have more to say about that tomorrow.Here is my testimony:

Thank you for the opportunity to speak to you this afternoon about our state budget.

As a the mom of a child with Down syndrome, and as a member of the board of the Flower City Down Syndrome Network in Rochester, I am upset both by Governor Paterson's Deficit Reduction Proposal and by the Republican counter-proposal to make severe cuts to Medicaid services. These cuts unfairly victimize people with disabilities.

As a homeowner I know that neglecting a leak in my roof will lead to damage to my ceilings, then to my furniture, then to my rugs, then to my other belongings, eventually damaging the house’s very foundation, and I might even lose my house. Because of this cascade of ever-worsening problems, fixing even a small leak in my roof becomes my priority. Even when my budget is tight.

I submit that the people of NY—people like my daughter--respond to neglect much the way my house does to a hole in its roof. I believe that the proposed cuts to the OMRDD and Medicaid, and the cascade of damage that will follow for New York, and for New Yorkers and for my little girl, should not be allowed to happen.

The OMRDD provides funding for services for people with Developmental Disabilities including those with Down syndrome. This funding brings in Federal matching money which I know our state can't afford to lose. .

Agencies which rely on both OMRDD funding and Federal matching funds may well find that grants they receive from other sources are jeopardized by these cuts as well. Some of these agencies may be forced to close their doors, most will have to cut services and staff. Where does that leave our kids?

Increased unemployment--both of caregivers and of people with Down syndrome and other disabilities--is another problem our state simply cannot afford.

Unmet care needs and fewer caregivers will lead to deteriorating health and increased burdens on the state’s life-care and healthcare systems. We can’t afford this either.

People with Down syndrome and other Developmental Disabilities really have no private options for meeting their needs. They contend with a dismal unemployment rate. And the pre-existing condition of their disability necessitates Medicaid eligibility. Consequently, very few have more than $2000 to their names, making it virtually impossible for them to afford anything else.

These proposed cuts unfairly and unnecessarily victimize people who already live in poverty. This is wrong for my daughter—it’s wrong for anyone’s child.

As our legislators you must find ways to re-structure necessary budget-cutting without laying the burden on people who have Developmental Disabilities like Down syndrome--who have nowhere else to turn.

Thank you.

(I took the picture from the back of the room... you can see the crowd and the senators on the stage. In the crowd are many folks in orange--they are from ADAPT.)

The Disability Blog Carnivals are Baaaaack!

2009-10-26T21:11:00.004-04:00

Disability Blog Carnivals are a collection of links to posts by various disability bloggers on a topic. Well, after a bit of a respite, a new one is up!

This one is on the topic of Disability and Work was put together by Liz Henry. Follow the links for some good, thought-provoking posts as the National Month on Disability Employment Awareness winds down.

What Can We Do??

2009-10-25T16:56:00.008-04:00

Governor Paterson suggests that the way to fix New York's financial woes is to cut funding to the OMRDD (developmental disabilities) and to the OMH (mental health) by 10%. When you take into the loss of matching funds this will add up to something like $375 million to the agencies that provide care and services throughout the state in this fiscal year...

As a solution our Republican legislators have proposed that NY cut Medicaid--victimizing the exact same population (with the addition of the elderly...)There is plenty of discretionary spending in the state, but THIS is where we begin.

I am disgusted.

I talked about why we'd advocate in my last post. Now, I want to talk about how:

1. Write letters, faxes, e-mails. The following is based on info was sent out by The Advocacy Center.

What is the best way to make contact?

By e-mail or fax (because of urgency) - or directly by telephone and in person.

Who do I contact? What if I do not know who they are?

Contact your personal State Senator and State Assemblyperson. You can go here and type in your zip code to get the names and contact information.

Are there others I should contact? Yes. You should also contact:

Senate Majority Leader Pedro Espada, Jr
espada@senate.state.ny.us

Senate Minority Leader Dean Skelos
skelos@senate.state.ny.us

Assembly Speaker Sheldon Silver
Speaker@assembly.state.ny.us

Assembly Minority Leader – Brian Kolb
KolbB@assembly.state.ny.us

Diana Ritter, Commissioner of NYSOMRDD:
Commissioners.Correspondence.Unit@omr.state.ny.us

When should I do this? Best if before Wednesday, October 28, 2009

Guidelines for your Letter or Conversation

For Parents, Grandparents and other concerned family:

My name is_____________. My ________(child or other relationship to you of person with a disability) has __________.

For Self-Advocates:
My name is_____________. My disability is__________.

I have received (or my family has) ______________services (please list all examples if more than one) from_______________(names of agencies.) This has helped (me/my child/our family) in the following ways:_________________________(please be specific and name the direct impact it has had; for example – improved educational program, improved learning/grades, obtained employment, improved health obtained access to X,Y,or Z services, etc.).

Please do not cut OMRDD Family Support Services and Local Assistance funding. These services provide important support for children and adults with disabilities, and their families, including services like:

Whatever your family receives. Include things like:
Service coordination
Parent information and education
Professional and volunteer advocacy support to access complex systems of service
Family reimbursement to obtain otherwise unaffordable support

These services save New York State additional expense, by allowing people with disabilities to remain in their family homes or to live as independently as possible without reliance on more costly publicly-funded residential and day programs, and public benefits.

Thank you for your thoughtful consideration

Your signature and address (address is important so they know it is a valid letter).

2. On-line Advocacy:

If you prefer sending your correspondence on-line go here and fill out the form. You can personalize it with your own details--in fact, please do!

3. Go to your legislators' offices. In your home town, or in the capitol. Take pictures for your newsletter, your website, your Facebook page and for your suburban newspaper.

4. Go to the hearings. Rally. Gather (and remember uniting does not require uniformity--join cross-disability actions to be heard.) Invite the media.

5. Keep hope. California succeeded with a class action suit to halt similarly ill-thought out legislation last week.

Picture from here.

Why Even Bother??

2009-10-25T09:02:00.007-04:00

OK Folks,

I am getting a little exhausted trying to have this conversation with person, after person, after person, after person... so I am putting this in writing! Please pass it along!!!

The Governor of New York is proposing massive cuts to programs to the OMRDD (developmental disabilities), and the OMH (mental health)offices in NY. These offices provide the structure and funding for most of the services that people in these populations receive in NY.

These are not cuts to next year's budgets, these are cuts in what they have agreed to pay THIS YEAR (don't try this with your bills at home!)

At the same time, members of the State Assmebly have proposed that Medicaid funding be cut drastically... now. Leaving people with disabilities and the elderly high and dry...

We know the state is in trouble-- at this point everyone heaves a big sigh and says

So... WHY SHOULD WE EVEN BOTHER?????

So, with no further ado, 9 reasons to take a stand on this issue for the elderly and people with disabilities today:

9. There is already a waiting list for services for people with disabilities in NY. These cuts will make that list and that wait longer. This system is currently the ONLY mechanism by which most people can receive services.

8. These cuts will not only mean cuts to operating budgets to agencies across the state. As a consequence of these cuts those agencies will also lose any matching funds they receive from other sources. Millions more will be lost to our state... many agencies may be forced to close.

7. These cuts will increase unemployment in NY--both for caregivers and for people with disabilities who rely on care so that they can work, and for those who require support for employment (this after the president has declared October National Disability Employment Awareness Month--is that ironic... or isn't it?)

6. Increased unemployment and poor care for people who need it will both cause a cascade of other problems for the state... all of which will cost.

5. Political Game 'A'. When a "leader" takes everything away from everybody and then gives back to whoever screams he/she emerges a hero.

It never fails:

Some group that doesn't have a voice won't scream so their programs will get cut which improves the bottom line.

AND the leader is seen giving to the screamers...

It's a win-win for any politician... (NY has seen tons of this, but I do not have time to create links for this--I have letters to write!!)

4. Political Game 'B'. The other most common political game is that no matter how many letters, calls, etc that a legislator's office may be receiving the legislator will tell the world

"I am not hearing from _______________" (insert name of whatever group they don't want to listen to.)

They must hear from us and we must make our presentation OBVIOUS to the rest of the world--through media, letters to the editor, and more--in order for our position to be recognized.

3. Political Reality 'A'. If your representation to the legislature is in the minority party, your job is bigger. Not only do your Senators and Assemblyfolks need to hear from you, but so do the Governor himself, as well as any committee chairs and the Minority and Majority leaders...

WE have to make it possible for them to be heard on our behalf.

(Are you listening, Monroe County?)

2. Political Reality 'B'. Our elected officials are politicians. Wheelers and Dealers Extraordinaires! This is their first proposal.

This proposal is the EASIEST (for them.)

It is NOT the best they can do.

Not even close.

If we accept the easiest, we will not get their best.

We deserve their best.

And.... ding, ding, ding....drumroll... fanfare and confetti.....

1. Our loved ones deserve and NEED their best.

(Take another look at the picture at the top!)

It is time to put our state government to work.

Are you psyched? Are you with me??? Are you ready to DO SOMETHING?????

Check back in a bit for a 'what to do' post.... give me a little while, I do not have magic typing fingers! :) But it will be today. The governor is bringing this to the legislature this week--possibly Tuesday.

Picture: NY State Senator Joe Robach at the Flower City Down Syndrome Network Buddy Walk. September 2009.

Ableism: C'mon People, We Can Do Better Than This!

2009-10-12T18:00:00.000-04:00

Ruth at Wheelie Catholic posted this story this morning. Katja posted this story this weekend...

Is there an epidemic?

Last week I was grocery shopping and the checkout guy was a wheelchair-user. The lady in front of me got in line without noticing that. Once she did notice she started fuming about how she did not need this.... etc, etc, etc...

I offered to let her out of the line, but she said "NO, why should I change???"

I didn't say another word. This gal was a volatile mess... and I had a stomach ache (wimp, I know... I admit a fear of bullies.)

When she got up to the line she was quite rude to the kid, but my entire plan was to say supportive stuff to him when it was my turn...

Until she blamed him for not keeping track of her charge card (really loudly) and then she found it in her purse...

Then I said--pretty loudly myself-- "So, that was YOUR mistake then??"

She did not answer, after she left the kid thanked me, and so did the folks behind me in line... but I knew I should have said something so much earlier.

Ableism is a belief that the able-bodied are superior to those with disabilities. It is shocking how many people believe this--and how many act on it.

People like to believe they are superior?? They tell themselves people with disabilities are taking something away from them?? People like feeling powerful over other people??

All of the above???

I give up... I don't know what it is.

It is ugly and it is dangerous.

How do you think this study makes me feel? How does it make you feel?

I resolve to speak up more? Will you join me?

Picture from here, by Tim Malone

Some Things I have Learned about Learning

2009-10-11T22:30:00.000-04:00

Over the years working with our kids' teachers I have run into a few glitches in the common beliefs about learning that didn't work for my kids. I thought I would detail some things that didn't go the way I had expected so you could analyze your own programs and interactions and iron things out early.

Organizational Skills: One year my son's team agreed that my son did not have these skills and decided that he needed to learn them. They tried positive reinforcement, they tried negative reinforcement, they tried ignoring the deficit, they tried orgainzing for him and nothing worked. EVERYONE was miserable and frustrated.

After a ton of discussion it became clear that they were treating organization/disorganization as a behavior, rather than as a skill.

After this they started explaining, modeling and giving him practice, the way they would to teach other skills. THEN they started seeing some positive results...

Behavior: My daughter always rode the 'regular' bus with the rest of our neighborhood. In first grade she suddenly started throwing her shoes on the bus. Now, this is obviously a dangerous thing to do--clocking the busdriver, or anyone else, is not conducive to safe arrival... So, they put an aide on the bus for safety. The aide sat with my daughter and my daughter stopped throwing shoes...

One day I ran into her busdriver in the grocery store and I said that I was so glad that we had solved the shoe problem. He agreed that the shoes had stopped flying, but then he said something eye-opening. He said that we didn't really know if she had learned or was just stopped... He was right of course. There is a difference between being good and being controlled.

I called the school that afternoon and we had the aide moved out of my daughter's seat to allow my daughter to make choices, but to intervene if she made the wrong one... A much better plan, if you think about it.

It should also be noted that compliance by itself is not an appropriate behavior goal. One team I know of wanted to make "will not say NO" a goal for my friend's daughter. If she can't say no how would she deal with unsafe situations and people? That was NOT an appropriate goal.

For another disturbing behavior experience read this post.

Flashcards: Testing and teaching are two different things. You can practice retrieving information that someone knows by using flashcards, but you don't TEACH info by asking someone repeatedly if they know something. Enough said?

Reading Comprehension: I learned this mind-changing thought from David Koppenhaver: To teach comprehension let the reader know BEFORE they read what they are looking for. Endless quizzing is testing, not teaching.

You can do this with a beginning reader as you read. Pause and say "What is Junie-B going to buy?" Or "What is Charlotte going to write?" For Social Studies or Science let them see the questions at the end of the chaper before they read the chapter as well as after. Or teach them to ask themselves what they want to know in the upcoming reading...

Think about it, it makes sense. Do you have a better chance finding what you want by sending your kids to just go look around the house for a few minutes and then asking did they find your phone charger? Or does it work better if you ask everybody to look for the phone charger?

Discrete Trials: While this method is popular and effective for many kids, the applications needs careful consideration. For my daughter it seems to make disconnected information silos in her head. For what she learns to be useful to her she needs webs that connect new info with old in meaningful ways--this helps with retrieval. It also makes what she learns meaningful to HER, not just meaningful while being mediated by a partner in a certain proscribed way.

The Fry Word List: When Jenn was younger her team was looking for ways to teach her reading where they could document their results. They spent hours and hours working on this list of 300 or so words... The problem was that this list is made entirely of small words like if and and and the. Not a noun or a verb among them. It is totally boring. And after hours of tedium, when you can finally read the whole list there is not a single book you can then pick up and enjoy.

A lot of time and effort, excellent documentation, but no meaningful literacy gained. Another activity that only had meaning when someone else was there--if you found her word cards out of context--say on a bus seat--they would mean nothing to you or to her.

3x5 Cards: These are the bane of my son's existence. Teachers REALLY love them. My son can't write on them. He can't jot notes on little bitty cards and by the time he has he has memorized his note and doesn't need the card. Every year we have to discuss this. Every year. When sitting in meetings it is hard to think of alternatives. One can copy a page (using a copier)and highlight the needed info. One could do lots of things on the computer...

Readiness: It's not all it's cracked up to be! One of my son's teams wanted to remove him from the strong academic classes because he couldn't keep up with handwriting (pointing out that Stephen Hawking has "handwriting difficulties" yet still makes use of his education made everyone chuckle and re-think!) Readiness seems like an important concept, but even if my son can never handwrite well he will build his life on the info he has learned. We can teach skills, but we can't stop that info to teach the skills. Ever.

Readiness is also frequently used as a reason not to do things with my daughter--it's a reasonable goal, but should never be a barrier. Whether or not she knows her colors, she should be taught other things. (She does, but I'm just sayin'...)

I hope these examples help you analyze your own situation and avoid some pitfalls. Do you have other examples?

The Best Part About Down Syndrome...

2009-10-10T22:25:00.004-04:00

Down Syndrome New Mama started a meme called The Best Part About Down Syndrome. If you go to the comments section of her post you can read what a bunch of parents have written.

Now, I already included most of my favorite parts in this post this spring and I don't want to be repetitive except to say....

My favorite part about Down syndrome is....

Jenn.

Yes, it's sappy. Helloo-ooo, I'm her MOTHER!

Lots of Legislation: Walk through the Web With Me

2009-10-07T16:47:00.004-04:00

Now the web on this tour is not like the lovely web in this picture... naturally not.

Our web is more like the one that I walked through on my porch this morning--all globbed up and folded on itself and stuck to me...

Now doesn't that sound like fun?

Seriously though, there is a lot of legislation and government activity going on right now that affects many aspects of living with disability. We can have an impact for ourselves or for our kids if we take action now.

First up, of course, is healthcare:

Healthcare coverage for people with disabilities is a very tricky and delicate proposal. And it not only affects people's health... it also impacts potential for employment and often even where a person with a disability can live.

Healthcare, is of course, necessary for people with disabilities and it can also be expensive. Therefore employers are often hesitant to hire people whose high health needs will make insurance more expensive for their company...

Employeers often need not worry though... even if they did hire someone with a disability and offer them insurance the likeliehood is that the person with a disability would be turned down for coverage because their disability is "pre-existing condition."

So then what does a person who needs care do? They sign on for Medicaid.

The care can be ok depending on your state, your town, your caregivers and all, but now you have to stay eligible...

To be eligible for Medicare and Medicaid you can't have more than $2000 in assets to your name.

So you can't work. At least not much...

This is why so many people with disabilities want a public option for health insurance--something affordable that they can buy on their own. So they can separate their healthcare from their employer AND make a living...

Action: Call (800)828-0498 and ask to be put through to your Senator's office. Let them know that these issues matter to someone you love.

More about healthcare:

Under the current payment systems for Medicaid and Medicare funding is guaranteed for people who live in nursing homes and other institutions and not guaranteed except under a variance for people to live in their own homes in the community.

Now living in your own home is more desireable, AND it has also been proven to be more cost-effective... but that isn't where the money goes. This 'institutional bias' forces many people who could live and work in the community to live in care systems they neither need or want...

What is being proposed under the Community Choice First Act is that the "money will follow the person" rather than the current system of the money going to organizations to divvy up the way they choose. This will allow folks who need or want more comprehensive care in a small or large facility to have the funds for them spent that way. And for the folks who want to stay home, the money for their care can be spent on community-based services.

Action: Check out this website and this website. Then go to this page click on the healthcare reform issue and fill out the capwiz. It will take about 5 minutes...

Now, about employment:

As you can see in this article, President Obama has declared that October is Disability Employment Awareness Month.

Creating employment opportunities for the 65-75% of people with disabilities who are unemployed in this country, most of whom live in poverty (see above) will improve their lives...

It will also improve the economy. There are millions of folks who are not participating in the economy either as worker or as customers because of the unnecessary poverty that is foist upon them.

This is NOT the future I want for my daughter.

Action: Pay attention locally for forums, discussions and events. Participate. Get to know the folks there. Pay attention to barriers and help build bridges in your workplace and community.

And the good news:

Not only can you have an impact on a complex and sticky bunch of issues, but it's actually good for you.

Yep, it's true. Read this article.

Now, aren't you glad you stopped by?

Picture from here.

Introducing Embry Burrus, Author of Mama and Margaret

2009-10-06T12:32:00.006-04:00

Hi, my name is Embry Burrus, and my big sister, Margaret is one of the funniest, coolest people I know. In fact, she is one of my most favorite people to hang out with. She loves to have fun, and is always ready for a new adventure – no matter what it is, Margaret’s up for it! She is also one of the most loving, kind and non-judgmental people I know, too. She shows me everyday what unconditional love truly is. She is the best sister anyone could hope for.

Oh, and by the way, she has Down syndrome.

That used to be the first thing I would tell people about Margaret, as if I needed to “temper” whatever I said about her with those words: She has Down syndrome.

But now, I realize that the fact that she has Down syndrome does not define her at all. People don’t like to meet Margaret and hang out with her because she is all of those things and she has Down syndrome; they like to meet her and hang out with her because she is all of those things, period.

What an awakening that has been for me—one of the many things I’ve learned from being Margaret’s sister.

I realized several years ago that there was a wonderful story in Margaret’s life, and in the journey that I have taken in being her sister, so I’ve written a book about her, and our now 90 year old mother. If you’d like to meet both of them, please visit my website .

I look forward to meeting everyone on this blog, and thank Terri for the opportunity to contribute my story!

October is Down Syndrome Awareness Month

2009-10-03T12:30:00.000-04:00

I am not going to promise 31 posts about Down syndrome this month because there are just too many things I want to write about, but I do have a few treats planned... Stay tuned!

Shedding a Little Light: NVLD Strategies That We Have Tried

2009-10-02T23:00:00.008-04:00

Since my son's diagnosis with Non-Verbal Learning Disability in the 4th grade we have done a lot of learning.

When he was diagnosed I turned first to the literature... this turned out to be a huge mistake. Not only is much of the literature distressingly negative (I actually threw one book away so my son would never see it!)The literature also offers pitifully few useful strategies.

I did eventually find a book I liked (see right sidebar.) From this and from our experiences with our daughter we found/developed some things that worked for my son--ways to improve skills and ways to mitigate or accommodate weaknesses.

I know each person is individual, but thought if I shared the way we analyzed situations others could build on them.

1. Begin by trusting yourself and paying attention. You can figure out ways to approach most issues.

2. Analyze your situation. I know, for example, that many of my son's difficulties come from integrating two tasks at once. I know that if I can figure out the words to say he can understand a lot. And I try to know what motivates him--and what doesn't!

3. Figure out specifically what is needed. Somtimes skill practice is in order, sometimes an accommodation is in order--sometimes you go over the mountain, sometimes around.

4. Learn your rights and develop advocacy skills. There are many things you can work on at home, but you will most likely have to negotiate with someone somewhere along the line. This is another learned skill--read, study, practice.

Here are some specifics that maybe you can springboard off of:

Visual skill practice:
-video games (choose strategically.)
-sports
-bike riding
-map reading
-sorting
-folding (laundry or origami!)
-crafts
-crosswords/word searches
-playing catch

Logic and inferencing:
-Lots of discussion about what would happen if...
-predicting sports, discussing outcomes and what would have been different if...
-comment on movies, tv, other situations
-storytelling and creative writing

(Remember, your child may process best verbally and may do a lot of their thinking out loud. Don't interrupt or answer too many of their questions too quickly if this is the case. A short answer seems convenient, but stops them thinking. Lots of "Hmmm, that is a good question... what do you think??")

Social practice:
-analyze situations out loud
-practice scripts for starting conversations in predictable circumstances ie: phone answering, calling someone, etc (this buys time for processing the unfamiliar)
-discuss what you see on TV or in movies

Math
-explain processes verbally
-have them explain their processes verbally
-when lost analyze where they got lost--one child I know got terribly stuck because they missed the definition of the words sum and product... lots of lost ground, but a very simple solution in the long run.
-Look for teachers who use lots of verbal explanations.

Executive Function (organizing self, work, starting, finishing, analyzing)
-Clear bins for storage if visual memory is poor
-calendars with alarms
-my son can't estimate how long something will take so I tell him he must prioritize by need/due date, (In other words do homework first, don't just leave an hour for it--this is not perfected yet!!!)

These are my ideas. What are some of yours? What strategies have built bridges for you or your child?

The picture is of my son and the Charlotte Lighthouse--not Char-lit like NC, Char-Lot as in part of Rochester.

Hope and Non-Verbal Learning Disorder

2009-09-30T13:59:00.009-04:00

When you look at the literature that is available about Non-Verbal Learning Disorder you begin to think that HOPE and NVLD are mutually exclusive terms.

This negative portrayal really bothers me. I think it is the result of a number of things, the first being a system that only give grants to researchers who are working on a "PROBLEM." Another is a society that believes in the medical view of disability which tells us that the world is full of 'normal' people and 'not-normal' people and the entire goal of group B (the 'not-normals') is to become like the group A ('normal') people.

To me, this is ridiculous. While the group B folks are hanging out in their petrie dishes being evaluated, no one is noticing that group A is empty...

There are a bazillion people making their way in this world and ALL of them have some sort of difference, some sort of uniqueness and, in truth, some sort of 'abnormality' (most of them have nothing to do with any diagnosis!)

That medical model of disability also teaches that a diagnosis is a rigid, unchanging thing and that the outcomes of diagnoses are solid and immovable.

Well, I am here to tell you: 'Tain't so.

As many of you know, I have three children. Among them is my son who has NVLD and my youngest daughter who has Down syndrome.

Well, here's something you may not know:

People with Down syndrome are living longer, living healthier, and achieving more than the medical profession ever predicted. And Down syndrome is an extra chromosome (21st.) What could be more unchangeable and set-in-stone than an extra chromosome??? Yet lives and skill-sets and other indicators are improving every year...

If this is true about Down syndrome, how could it NOT be true about NVLD??

Well, it is true about NVLD.

More than that, there is no percentage in believing otherwise.

There is an excellent book by Carol Dweck called Mindset: The New Psychology of Success. In the book Dweck says that there are 2 schools of thought in the world.

The first believes in definitive skill sets that do not expand. If you have them, you have them. And if you don't, you don't. Much of the world--certainly much of medicine and education--belongs to this school of thought.

The other group believes in the possibility of improvement--for anybody in any area.

To me, this stands to reason. I believe that there are talents and skills that start some people off well in a certain direction, but I also believe that anyone who works on something--pretty near anything--can improve.

Think about it, I am not athletic, but if I started exercising I could become more fit--all areas could improve: cardiovascular, strength, coordination, endurance... If I worked out regularly and well over time, I could even beocome quite fit. (I am exhausted just thinking about it!

Now, it's likely I will not ever be able to play for the Buffalo Bills (no matter how much they need me!) There are indeed some limits that will not change. In fact, there are LOTS of people who don't get to play for the NFL... with and without NVLD.

On the other hand, could I do more or better if I worked at it? Sure.

My brother is a state trouper which is what he always wanted to be. When we were kids he used to practice observation skills. He would look at a new situation, look away quickly and quiz himself on what he saw and then look back to see how he did. (He wanted to practice guessing how much people weighed but my mother would NOT let him go up to people and ask them!) Nowadays it is amazing how much information he takes in when he looks into a room or when someone walks past--trust me, he wasn't born that way!

All this is to say that a diagnosis is a starting place. And all it does is show a pattern of strengths and needs. Your child can use their strengths, and they can work on the areas where they are not strong, if they want to, and get stronger. Just like anyone else.

I have written before that my son's social skills have gotten more fluid over time, as have many of his physical skills.

Other things have not changed much. Some because he doesn't care to work on them (handwriting--why bother when he can type?), others he just hasn't much impact with--yet.

A growth mindset alone can take you far--add in accommodations and resilience and there are tons of approaches for most any situation.

The issues with NVLD for yourself and your child are real and can be frustrating, but there is still room for growth, there are opportunities to succeed and there is room for hope.

Today, the pep talk. Tomorrow some strategy ideas...

Messages Blog Carnival

2009-09-28T16:39:00.005-04:00

Barbara at Therextras is hosting a blog carnival called Messages. A collection of stories of disability parenting and teaching--some smiles, some tears and much to ponder on...

Check it out!

Unexpectedly Effective Advocacy Skill #6: Analogies

2009-09-28T11:33:00.000-04:00

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.

One of the techniques I have used to reach understanding with people who work with my kids is word pictures or analogies. Now this must be applied with a respectful touch--like anything else it could be insulting if you are not thoughtful (Obviously insults NEVER lead to understanding--which is in fact why people use them, but I digress... )

Sometimes, with our complex and highly individual kids, it can be hard to get people to understand them. It is common to try reports, evaluations, expert testimony, but sometimes providing information is not not enough to build understanding. (I have blogged about this before!)

When you are negotiating with a team about placement or classroom strategies or with legislators about removing community barriers and information fails to build the needed bridge many folks get frustrated and stomp out.

I would suggest that they have more tricks to try--they aren't done yet.

The next thing to try is a description of the things that are happening now (for example if your child is succeeding in Sunday school but not in Social Studies) or things that are possible if the new strategies or laws are implemented.

This is the time to be descriptive--supporting this with photos and more can also be helpful.

Yet, sometimes this fails also. The people you are talking to don't see what you mean still, they don't see how this relates to them--or they plain don't believe you.

Nope, it still isn't time to quit or throw huge tantrums--tempting though that will be!

Along with all of the above tools I recommend the using of analogies, metaphors and comparisons to add reach to bridge you are trying to build. When a teacher or a legislator is not be able to imagine our children responding the way we say they will or that they should do what we are saying they should, try comparing the situation with something familiar that seems similar in tone.

Over the years I have compared:

*My son's accommodations--which his team saw as cheating--with eyeglasses (I tell the whole story here.)

*My daughter's need for both OT and PT with her need for both mittens AND boots.

*My son's need for separating input from output when he learns with juggling (and my lack of ability to do it!)

*My son's need for teaching organization skills with the way Spanish is taught. (This one started out REALLY heated because they were one day trying to encourage him to be organized by telling him he was smart, the next day they tried negative reinforcement and kept him after school... no one was teaching him what they wanted him to know.... grrrr....)

*My son's learning disability with a scene from a popular movie where someone was walking along through the woods and suddenly fell into a hole and no one knew where the character had gone. Can't remember the movie right now... some army flick...

Something to add to your bag of tricks... let me know how it goes!

Picture from here.

Glory Day

2009-09-27T07:00:00.000-04:00

Saturday was a quiet day at home--boring in my estimation. But when we sat down to dinner my daughter said, "Today was a Glory Day!!"

A Glory Day?? Really? "What made it a Glory Day?"

"I got to listen to my music, watch a movie, read my book, play some games, do the dishes... I like it."

Well, her positive attitude was contagious. I smile every time I think about it.

I guess it was a pretty good day after all!

Morning Musing

2009-09-26T10:27:00.004-04:00

I have been doing some reading this morning. Are these three posts connected? Or is it just me?

Post 1: Dave at Rolling Around in My Head.

Post 2: Al Powers at Changing Aging.

Post 3: Laura Rose at Change Starts at Home.

It is a crisp fall day here--enjoy the weekend!

Issues, Boy Have We Got Issues! Autism, Texas Institutions and Assisted Suicide

2009-09-24T16:28:00.005-04:00

There is so much going on in the disability community at the moment... And if you ask, as I mentioned in my last post, Where Does this Lead? The answers are pretty upsetting...

Let's start with this:

Institutions: Now, just a few months ago the world was horrified by the story of Fight Clubs in Texas institutions where staff goaded residents to fight for their entertainment. And Texas, rather than investing in the tough work of dismantling this system and its culture of contempt and violence REWARDED the system by superfunding it...

Where did this lead?

This makes me ill.

Assisted suicide: Bill Peace talks about England's developing stance that although helping kill someone is against the law, in the case of 'severe disability' it may be understandable and not be prosecuted.

Where does this lead?

Over at Not Dead Yet, Stephen Drake has the sad story of a woman in Arizona with a disability who killed herself and was hailed in the newspaper as a hero for doing so... Disgusting--especially since most of her 'struggles' could have been alleviated by a decent public transit system, affordable healthcare and a caring community...

Pitiful, uneccessary and portrayed--sold--as perfectly understandable.

Where does that lead?

Y'know, outside the disability community, many folks see Down syndrome as 'severe.'

And now another disability organization sells out its constituency for the almighty dollar... They get funded while teaching the world that autism is evil.

Where does this lead?

Will it help parents, neighborhoods, schools, communities and employers welcome people with autism into community life? Will it increase understanding and acceptance, increase funding for things like assistive technology and other things that improve lives for people with autism?

Yesterday I heard a mom say that she wouldn't have her young child vaccinated against H1N1 for fear of autism... does she really fear autism more than death?

Why would she, do ya think??

Here is a disability campaign I like: and here is a place where you can create your own campaign poster (and be in a contest!)

Trouble of course is that pity is lucrative... solidarity isn't. There should be something we could do about that,

In the meantime, pandering for bucks has a name...

Not a nice name...

So what can we do?

We can speak up, we can look for new and clever advocacy strategies, we can be present and visible and heard and expect respect... We can build something better.

If we pay attention and ASK!!!

Where does this lead????

We can be consistent and we can STOP the messages about disability that will lead us places we don't want to go.

On your mark, get set, GO!!!!

We have a lot of work to do!

Messages in The Madness

2009-09-23T01:39:00.007-04:00

For several years I have worked with a woman who is both an excellent nurse and really good company. She also has a tendency to mix metaphors and create malapropisms that stick with me for years after I hear them.

One of the first I remember was when she was pretty sure about her opinion of a situation, but not COMPLETELY sure. She told me "not to hold her to it with a fine tooth comb." Now I would never have thought to hold anyone to anything with a fine tooth comb... but I do now. So be careful around me and hair tools.

Another time she was suspicious that someone at work had ulterior motives (which I am sure they did.) She told me to be careful because "there's something wet in the water." Of course, everything in water is wet, but I did not mention this to her--wouldn't dare!

But my favorite by far is her frequent assertion that there's a "message to her madness."

She's distorted a phrase, but it isn't really a bad idea.

When dealing with all the chaos: the kids, the meetings, the policy issues, the opportunities, the barriers, the rest of your life, etc, etc, etc... it is a good idea to have a few guiding principles--some message in the madness.

A consistent (though not rigid) set of beliefs can be very helpful... though they can lead to surprising places.

I went to a conference when Jenn was a baby where the speaker taught us all to ask "Where does this lead?" about the big and little decisions we would face in our daughter's life.

So when we consider doing things for our daughter or showing her how to do them herself we try to ask...

When we choose activities...

When we teach and discipline...

When we make plans...

And when we choose programs...

When we advocate personally and systemically...

This year, for the first time, we have chosen a special education program at a special education school for my daughter rather than having her included in our local school for her program. This was an agonizing decision for me--completely shocking in fact, but in the end it was the question "Where does this lead?" that cleared the path.

As we looked at our local high school and looked at the other possibilities available in our community we came to the reluctant realization that she would actually be more sheltered and less independent at our high school than at the special education school.

Our vision for our daughter's eventual life based on her own interests and choices (and not on any system's offerings, rules or shortcomings) has not changed. Her sense of herself as independent is crucial to this vision so we made our choice accordingly.

We believe.

(And if that proves wrong we will change it!! Trust me on this.)

She started there this summer. She likes it and it seems to be going well...

The message stays the same, but the path? That twists and turns. It's madness!

Picture from here.

Show Me, Don't Tell Me

2009-08-29T21:08:00.002-04:00

When I was a teenager my mother pointed out that there are things that people say that work (or should work!) as a warning for the attentive.

The phrase she was talking about at the time was "Trust me!"

"Never trust a person--a guy--that says trust me," she said.

She, was not wrong...

People only say 'trust me' when it is too late--when someone already doesn't trust them. Usually for good reason!

Years later there are some other phrases that I have added to my danger list...

These phrases may be appropriate among strangers for a minute, but among people with longer associations they are warning beacons.

Phrases like "I'm in charge here!" for example.

A stranger may need to ask who's in charge. Your employees or children should know. True leadership should be evident without a repeated say-so.

If it isn't, there's a problem.

After hearing the play-by-play of one of my dearest friends' IEP sagas I have developed a new one:

"We have your chid's best interest at heart."

Yeah, right.

I think they should wonder why they have to keep repeating this.

I think their good intentions should be obvious.

I think they should look at their failure to read the child's evaluations before the meetings, their failure to honor regs and timelines, and their horrible disinterest in strategies that make the child successful in other venues among other atrocities for the reason they're not.

Don't you?

Anyone have other danger phrases??

Ten Tips for Thriving with Teachers

2009-08-28T21:34:00.003-04:00

Well now, summer is over and we are off with a bang!

1. Listen! You are looking for at least 3 things.

First, Your teacher's style. Many teachers fall into 2 very general categories. They either see learning as the result of wild discovery or of strong structure.

You need to hear their style and then show them how including your child will meet their agenda. (eg: Providing this____ for Junior will help them fit into your structure... or... Providing this _____ for Juniorette will help the whole class step into a whole new discovery.)

Next, you are listening for their fears. When you hear these you can tailor your assistance to alleviating them.

Finally, you are listening for the political situation they are dealing with. Sometimes administrators do not support teachers--especially those in special education--because of things that have nothing to do with your teacher or your specific child (I know this is not TOTALLY shocking to many of you!)

If you know what the situation is you can provide support--or engage the district to--in a way that your teacher is protected (or at least not endangered)

It requires strategizing, but you can do this. Because you have to. (I know, it's not fair, but it is true anyway... Sorry about that.)

2. Individualize your approach. Some teachers will respond beautifully to portfolios and disability info, others are offended that you don't think they know what to do with your child. Present your information in a way that fits your child's teacher and class.

3. Provide support. Whether this means providing data about your child's disability, or reports from outside professionals, or whether it means making "official" requests, etc so that your child's teacher gets what they need, do it.

4. Inform. A lot of times our kids need things that are unique and hard to understand. Use examples and analogies that people "get." If something you say isn't understood, change. Say it a different way--use examples and analogies--without ever implying 'duh!". If you imply disrespect, you, and your kid, are done. Keep trying. Respectfully.

5. Be as succinct as possible. When you provide data for teachers bullet it. Use sound bytes. Keep it as short as possible.

Teachers have lots of students and are overwhelmed when we hand them text-dense info about our kids (this is why I LOVE Paula Kluth's new teacher guides.)Look for quick, catchy ways to tell folks what your child needs.

I finally learned to say to teachers that 'my son cannot juggle input and output.' In other words, he can't write notes while he listens, for example. This phrase was understood by his teachers in ways that reams of reports never were. This small phrase gave them lots to work with. Then they succeeded. Then they were encouraged to look for MORE success.

Try it, you'll like it!

6. Don't do the work for them. They are educators, you (usually!) are not. Provide the basics and let them come up with the details whenever possible. (Though my daughter has had teachers who never had a plan B--in that case, skip this!)

7. Don't harass. AND, Don't back down. This sounds contradictory, but it isn't. (Or, at least I don't think it is!) Persistent, polite and PERSISTENT! They can do this, they specialize in learning. They want an easy day, but most really do believe in WHY they teach and believe in education. They just need to expand their vision to include our kids... we can help with this. Shame we have to, but we often do--and if we succeed, we succeed for way more than just our own kids. Absolutely worth it.

8. Be patient. Within limits. They may not make the jump to meeting your child's individual needs WHILE you are talking with them. But every thoughtful conversation plants seeds. Give them a reasonable amount of time.

9. Allow yourself to be surprised. Sometimes teachers or programs work in ways that you would never expect... or people who couldn't work with your child in 6th grade are great with them in high school... It is weird, but true. And people who don't get along with me sometimes do fine with my daughter... I am shocked when it does, but it does happen sometimes. If it happens to you, accept it. Enjoy it. Don't try to explain it. You have plenty to fight about, let the things that work, work... even against all odds!

10. Stay focused. It is always you AND the teacher vs. the barriers blocking your child. NEVER you two against each other. They and the administration may try to twist this. Do not let them. Ever. People have to adjust their views, and philosophies, and work days to accommodate our kids and it is easier not to. But if the focus remains in the right place our kids can succeed and surprise (and teach!) entire systems.

These are just my thoughts... What can you add?

Astounded by Grief

2009-08-11T13:58:00.003-04:00

Keith is in front on the right. My husband is front left. Family camp... Breakfast.

Our family friend, Keith--young, in shape, healthy--was away on a business trip and died. My heart is broken. He leaves a wife and 3 young kids and loads of friends and family who are stranded in the land of faith and pain.

Keep us in your thoughts, won't you?

internet/Computer Issues Resolved (Mostly!)

2009-08-02T21:19:00.003-04:00

Yeah, I got up to 175 posts and then all the computers (3) and a router died... It has been a month of figuring the whole mess out and I am back. AND I have spent the last 4 days at the National Down Syndrome Congress Conference in Sacramento and I have SOOOOO much to tell you. I am bursting.

Really!

There will be several posts over the next several days. Just warning you...

Hope you've missed me. I sure have missed you!!!!

Fondly, Terri

NVLD and Social Learning

2009-06-27T13:38:00.004-04:00

During my Partners in Policymaking course I was privileged to hear Al Condeluci speak. Al is the Executive Director of UCP in Pittsburgh. He grew up with a cousin who had Down syndrome and has been a lifelong proponent of quality lives, relationships and belonging for people with disabilities.

His talk at Partners was a how-to seminar on joining and belonging to integrated groups for people with disabilities. His warmth and enthusiasm were contagious and his strategies were completely practical and useable--and honestly would work for anyone.

He said that people usually join groups around interests like gardening or trains or photography or Civil War re-enactment rather than around characteristics.

So the first step is to determine an interest. After that, there are a few things to observe:

* People who BELONG in a group share a common vocabulary (for example for photography: camera, film, digital and flash for starters) as a beginner you don't need expert vocabulary, but try to learn some of the basics.

* There are social customs or patterns that people who BELONG to a group observe. For example, certain people always sit in the same seat--if you wish to BELONG, do NOT sit there. Watch the group for a bit to notice the way things are 'always done' and respect that. You can make additions and help with changes once you really belong, but NOT in the beginning.

*Groups follow a typical bell curve. 20% Negative, 60% undecided (waiting to be seduced is what Al called them!) and 20% what Al calls Positive Gatekeepers. Many folks make the mistake of begging for the good graces of the negative folks which they will NOT ever give you--forget them. Observe the group to figure out who the Positive Gatekeepers are--they are the conduits to belonging. They will say "hi, come with me, let me introduce you to everyone!!" because that is just who they are.

*Introduce yourself to the positive gatekeepers and ask them to bring you aboard.

I went home from Partners and tried this out a number of times for my daughter who has Down syndrome, with excellent success. I never gave it much thought for my son, until one summer he was in a drama group and bringing a book with him to read on breaks.

I mentioned to him that people who saw him with a book probably wouldn't talk to him much because they would think he was busy... He said the kids were playing cards during breaks and hadn't asked him to play.

Thankfully, I thought of Al's talk.

"Do you know how to play the game?" I aked. He said he had watched and thought he did know the game.

Then I pulled out my notes and showed them to him. He had indeed noticed some of the social customs I was talking about.

The next day he want in, book in hand, to watch for who the positive gatekeepers might be.

He came home with a person in mind.

He said it would be awkward to ask, but I assured him that positive gatekeepers do this for everybody and won't even notice. Then we had to come up with a question to ask. He decided on, "I think I have figured out how to play the game, could I try?"

The next day he got out of the car with his book again...

When I picked him up he told me he had played cards all day, and the next morning I noticed he left his book at home.

Continuing Growth.

It has been several years since that summer cardplaying success. Social stuff still doesn't always come easy, but it is ever improving.

My son still starts conversations in the middle without giving context sometimes... and he still is more comfortable with smaller groups than larger ones. And I am always looking for strategies that I can explain that will expand his repertoire. (In fact he read this post by Stephen Drake and said he was going to remember this to try.)

And two weeks ago he went to a big end-of-the-schoolyear event. When I went to get him I expected to see him sitting at a table, or pacing around the activity as he often does. But no. He was out on the dance floor in the midst of a huge group of kids dancing like a wild man--like everyone else...

Will he be able to do that every time? Who knows?

Frankly, no teenager is socially smooth every time!

Growing and learning are lifelong processes for EVERYONE--NVLD or no.

Non Verbal Learning Disorder and Social Learning from the Beginning

2009-06-23T18:37:00.003-04:00

One aspecct of Non Verbal Learning Disorder that many folks find challenging is a lack of social fluency. Fitting in can be very tricky.

For my son this is an area where he is continually growing so I thought that I would (with his permission) share some of our experiences.

When my son was little--long before he had a diagnosis--he would have reminded you of Lt. Commander Data from Star Trek: Next Gen. He spoke in a sort of clipped way, he did not use contractions, and the timing of his responses in conversation were delayed.

Over the years this dissipated. People that we camped with every year remarked at one point that it used to be when you greeted Tom he would take forever figuring out who you were and why you were talking to him before he could answer. "Now," our friend said, "when I say hi, he says hi--it's great!"

Neighborhood interactions could be a bit tricky between his hesitant style and his very literal thinking. Another 4 year old (or more likely, 6 year old) yelling "I'm going to KILL you," would send my son running home in terror.

He was about 4 when I explained that 'exaggerating' means saying something much bigger than you really mean to make things sound exciting. I would make a big show of saying "I told you a million times," or "That was the loudest noise in the WORLD!" and I would compare flying bugs to birds, or airplanes.

Once my son got the hang of it he LOVED it. He thought it was so funny.

And the next time the kid down the street yelled at my son that he was going to KILL hiim, my son turned to him and calmly said, "Exaggeration." Since the drama was gone the kids pretty much stopped pushing that button.

And I learned that I could explain social things to Tom and he could get it.

Not long after that I had the opportunity to mention to him that crying makes mean people meaner. He thought that was just awful (and so do I) but he saved what he could of his need to cry for the safety of home.

Another fun lesson was puns.

At dinner when I asked him if he wanted to put cheese on himself he would answer in horror, "No, on my spaghetti!"

Or if I asked if he wanted me to put his coat on he would tell me that it wouldn't fit me.

Which would have been hilarious, but he was serious.

So I pulled out the primer of punniness, Amelia Bedelia, and 'splained it to him... again, once he caught on, he couldn't get enough. He graduated to the Xanth "Trilogy" by Piers Anthony by the time he was 12 for the sheer joy of it. Frankly, I think much of his enjoyment is because his first thought is still so literal.

Next up: Joining groups.

No Drive Through Life and Wrongful Birth

2009-06-16T01:33:00.006-04:00

I have blogged before that many years ago when I was single, years before my daughter was born with Down syndrome, I believed--and told people--that I thought I would be fine if I ever had a child with a physical disability, but not a cognitive disability.

I have always pictured God hearing my little declaration and rubbing his metaphysical hands with glee. I picture God knowing that that that thing I dreaded would be one of the best gifts of my life. I picture the anticipation of my being surprised by joy I could not even imagine making Him smile the way I smile about the Christmas presents I have hidden for my loved ones...

When my daughter was born we had a few hours of shock and I was given a quick lesson on disability philosophy by a dear friend of mine who has CP, and another by the guy who answered the phone for our local DS group whose first word to me on hearing our news was, "Congratulations!"

Then we were on our way.

Having our third child meant all the joy and sleeplessness any new baby brings to a family.

That she has Down syndrome meant that and so much more. We were introduced to the parallel world of disability and all of the amazing folks who live there, we got to learn about and appreciate the hundreds of intricate steps involved in any piece of human development, we had to be resilient, we had to be creative, we had to learn new skills, we had to be intentional and 'attentional' about all manner of things we never even knew existed before.

Some things were easy and some have been very difficult. But I have indeed learned that things that are easy are often not as valuable as the things/relationships we must invest in.

We couldn't have a drive-thru life--we experienced the slow-food alternative. We have layers of complexity and relationship that have meant we must always engage with our life and as Robert Frost wrote, "That has made all the difference."

These opportunities for learning and growth have enhanced the lives of our whole family.

Beyond this, the things I have learned have given me the opportunity to give back--to share the things I am learning with others along the way. I have learned advocacy and public speaking and gained a sense of purpose that I never had before.

My husband and other children have benefitted as well. The common purpose of parenting a child with a disability has enhanced our family life on all fronts--the fact that Jenn is a great kid makes it fun too!

My older children have a sense of justice and an awareness of social issues and have had the opportunity to speak out in many forums that other kids their age have not. They have both taken an active role in helping Jenn learn and grow and the responsibility and maturity they have developed is already helping them at school and work as the begin to make their way in the world.

Last week a woman I met commented to me about my daughter with Down syndrome saying, "Well, sometimes we don't get the life we ask for so we just have to make the best of things..."

"Actually," I replied, "I have a much better life than the one I asked for--I wouldn't change a thing!"

She seemed very surprised.

I went home and told my kids about my conversation.

My daughter said, "How do people not get it?? I actually feel sorry for families who DON'T have a kid with Down syndrome!"

I laughed because, to tell the truth, so do I.

Now, I had this all written and that line was supposed to be the end until I read this article.

A family in Oregon is seeking big bucks from the doctors who did not diagnose their toddler's Down syndrome pre-birth. They state unequivocally that their daughter has changed their life and they would have aborted her if they'd known.

This article made me physically ill.

First of all I feel heartbroken for the family whose experience with their daughter has not been as positive as mine.

Secondly, it frustrates me that this story has made the news. My story about the positive impact disability has had on my life will never have the credibility with our ableist society as this family's story will because our society fears disability and WANTS excuses to opt out of dealing with disability and those who have them.

I know families whose experience with their typical children has been extremely unpleasant as well for various reasons, this isn't necessarily a disability issue, but disability will undoubtedly be blamed.

Thirdly, I am desperately saddened for that little girl and her siblings growing up in a town that knows that her family would have aborted her if they'd known her. Who will want to babysit her or be her friend? What will kids say to her and her siblings on the playground? And how will this stated need for perfection affect hers and her siblings' sense of security with their parents? I can't imagine any amount of money that would be worth the cost.

Picture from here.

Book Review: Disability is Natural

2009-06-14T10:54:00.003-04:00

One of my favorite disability books of all time is Disability is Natural by Kathie Snow. I have referenced it many times on this blog, but have never reviewed it.

Well, Kathie spoke in my area recently and I was there. I had lost my copy of her book some time back so I picked up the new, revised, 2nd edition (and had it autographed, naturally!) and read it again...

I still love that book!

The book begins with a primer about disability through history and then goes on to discuss disability today, and then on to ways to change things for our own kids for the future.

Kathie applies what she calls Revolutionary Common Sense to life with a disability in our society from birth through adulthood and shows how the sub-standard, sub-poverty level, un-real lives that are a reality for so many folks with disabilities are created. She de-constructs EVERYTHING--things we hate like institutional programs, and things we love like early intervention and therapies, and everything in between.

Kathie believes that "It is just as natural (for human beings) to have a disability as it is not to," and as a result believes that the structures that exist to 'fight' disability, or accentuate inability or difference in our society must be replaced.

Period.

She advocates for replacing everything with a positive belief about disability and creative ideas for building "real lives" for all people with disabilities IN our society.

She teaches about natural supports, a belief in Assistive Technology as a FIRST resort to give people mobility or communication--not as a last resort turned to when people have been years without them. She teaches about person-first language and the idea that we are not aiming for 'independence' but for healthy interdependence.

Much of Kathie has written is hard to read because it makes us look long and hard on our ideas about disability--some of which we truly cherish... and if you envision a coddling, segregated life for your child, or if you need to be told that every recommendation your district makes will be PERFECT for your child, this book is not for you!

I don't agree with every idea in the book, and have made decisions now and again for my daughter that I know Kathie would not.

Yet, I LOVE this book.

I NEED this book.

I find it challenging and clarifying and energizing.

It is way too easy to drift away from my beliefs about my kids because of professional input, school district's capacities, the challenges of everyday living, etc. I aim to compromise and end up being compromised--and I often don't even realize it has happened. This book makes me think, adjust and get back on track--for a while!

In her seminar Kathie told a story about her son, Benjamin who has CP. When he was little he did tons of therapy and the therapists said he should not get a motorized wheelchair because if he did he would never walk.

Kathie had also made friends with disabilities through her state's Partners in Policymaking program and one man with CP told her over and over to get him a motorized chair so he could LIVE.

She finally listened to her friend when Benjamin was 9. She said that afternoon he went out in the backyard to play... by himself... for the first time in his life.

That made me cry.

She said he still can't walk, but doesn't think he would have anyway--and she thinks that is fine. Inability to walk is not a problem, lack of mobility is.

As for Benjamin, he's gotten to zoom along with his friends anywhere he wants since he was 9. He is now going to college. And he thinks that if a trade was made, it was a fine one.

This book is challenging in the extreme, and absolutely worth every cheerfully prickly moment!

Read it, I dare ya!

The photo above has me at the top, fellow NY Partners grad Jenn Machucki on the left and author Kathie Snow on the right. To read an article by Jennifer Machucki click here.

To Battle or Not to Battle is NOT the Question

2009-06-06T16:32:00.008-04:00

The conventional wisdom about life--and about disability--is that everyone should "pick their battles" in order to save energy.

On the surface this seems like reasonable advice, but some people interpret this statement to mean that the two choices available are DISENGAGE or WAGE WAR.

It's just not that simple--or that drastic. And since whole groups of people (including yourself!) will have to live with the consequences of your approach to advocacy, some things need to be considered.

To start with, the phrase should be "Pick your strategies," not "Pick your battles."

There is no escape hatch. Alice in Wonderland could escape down a rabbit-hole to an alternate universe, but that option is only available to Alice and bunnies--the rest of us need to live here. (Which is really ok, have you READ Alice in Wonderland?? Wonderland is a VERY strange, unsettling kind of place!)

This being the case, we need to make our home here--in our schools, and neighborhoods and communities.

We are home-making. Not escaping. Not battling.

In this light there are several things to consider when approaching situations.

To begin with, conflict is normal. People are different and have different viewpoints. Conflict is not scary or negative, it's a sign that you're alive.

And alive is good.

The trick is not to avoid conflict, but to manage it.

So, where do we start?

Step 1: Evaluate: Does the issue matter? Don't waste your energy managing issues that don't matter.

An issue doesn't matter if it has limited or superficial impact, or if it will go away on it's own in a reasonable amount of time. I put matters of taste and style in this category most of the time...

Kids' hairstyles don't matter. Kids'clothing styles don't matter (though modesty and cost and a few other things do!)

I think it was my dad who told me that adolescence and snow both go away on their own if you leave them alone long enough... I don't always remember this, but I try.

My kids (and husband!) eat their eggs with ketchup. I think this is disgusting. Yet, it does not matter. I will tease my kids and they will tease me about this for fun, but not one volt of my energy will be devoted to changing their egg-habits. (Though if they WANTED to change, I would be supportive! :)

If it doesn't matter, it doesn't matter. Relax, enjoy, go swimming!

Step 2: If an issue does matter, it is WORTH addressing.

Any un-managed or unresolved conflict causes more and more and MORE conflicts to deal with (my friend believes there is a mathematical formula for this. I'm sure it involves exponents... if someone finds one let me know!) For example, if you don't address the aide that treats your child dismissively, pretty soon lots of people have learned that behavior from them... YUCK.

Beyond this, even though it can look scary, managing conflict is a valuable process. Working through differences with people builds your relationship with them, earns respect, builds your own skills, and it makes the situation you are living in BETTER.

Talk about win-win-win-win-WIN!

Step 3: Conflicts are resolved (almost always) by negotiating, not battling--and as Ruth at Wheelie Catholic points out, not by arguing (who says there's no such thing as a psychic friend?!)

You negotiate, discuss, use laughter, ask questions (read my posts on Unexpectedly Effective Advocacy Skills here.) You hold Crucial Conversations and you Get Past No...

Managing conflicts that matter through negotiation is like caring for that swimming pool. It can be hard work, there is a definite process to it, it can get a bit dirty, AND it builds a healthy environment for you to enjoy.

If a pool owner quits tending the pool mid-season, or blows up the whole mess in a fit of rage, things get awful pretty fast and no one gets to swim.

Step 4: Finally, some issues matter a lot and cannot be resolved through negotiating alone. Sometimes it is necessary to move from Crucial Conversations to Crucial Confrontation.

These problems pop up relatively rarely, and when they do you MUST respond accordingly. It becomes time to 'pick your battle.'

When you must battle, strategize--a temper tantrum is not a battle plan. Neither is wishing or whining.

Get help, commit to the process, arm yourself with information, allies, and tools.

And. Win.

So you can get back to poolside!

Picture from here.

Inspiration and a Call to Action

2009-06-04T16:37:00.003-04:00

My daughter introduced me to this song from Ragtime last year. My son heard the following quote in History this year and thought I should share it with you:

"I have pleaded your case not in the tones of a feeble mendicant asking for alms but in the thundering voice of the captain of a mighty host, demanding the rights to which free men are entitled." John Llewellyn Lewis

Now, call your representatives (in fact, call your senators too!) and tell them that you can't reform healthcare without reforming longterm care.

Tell them that the bias toward funding institutions INSTEAD of community-based care options is more expensive, prevents the will of the customer from weeding out non-competitive, outdated and undesireable services, keeps the disability community segregated and contributes to the high unemployment rate of people with disabilities since living in institutions eliminates many opportunities. And at times this bias keeps people with disabilities in situations where abuse is rampant. (Read this article to learn more.)

Today was a call-in day for the House of Representatives, for some in the west there is still time to call--for those in the east e-mail, visit or call tomorrow--a lot of calls today would have been great, but voices raised at any time have more impact than silence on important issues.

Special Events

2009-05-25T07:47:00.001-04:00

This lovely picture is the view from my favorite seat on the beach at Pineridge Resort in Parham, Ontario. The water and across the water a rock cliff and hill of green trees--lovely!

I love to camp, I live in a family that loves to camp and sometimes we go on a vacation where the only thing we will do is camp and the only people we will see, for days at a time, are other campers. In fact, these times make up some of my family's most cherished memories...

When I tell people that we go camping no one tells us we shouldn't.

At the same time no one makes us go to restaurants just for campers, or a mall just for campers. We are not required to live in a camping neighborhood, have a job just for campers, or attend camper church...

Most people would consider that ridiculous.

Yet when it comes to disability this sort of all-or-nothing thinking is everywhere.

There are folks who believe in all inclusion, all the time. They view any gathering for people with disabilities as segregated and feel every segregated activity steals time and resources from integration. They would never consider telling scrapbookers that they couldn't hang out with other scrapbookers. They would never consider telling Presbyterians they shouldn't spend time with other Presbyterians. But a group of people with Down syndrome is anathema to them.

I think these folks go too far.

At the same time, there are people investing tons of hours and bazillions of dollars trying to create systems for education, jobs, housing, recreation and transportation for people with disabilities that never allow contact with people who do not have disabilities. They create a "special" universe so encompassing that it is possible to go months without any contact with poeple who don't have disabilities except for your staff and your own family. You want exercise? They create a special exercise program. You want worship? They create a special worship service.

I think these folks also go too far. (In fact, there are folks building the same all-encompassing systems for the elderly and I think that is a mistake too.)

I think both of these extremes are very isolating.

To me it seems that all people need BOTH types of experience in their lives: All people should spend a percentage of time with folks who share their interests or characteristics, AND all people should belong to the greater, more diverse community.

It is a question of balance. You could compete in Special Olympics AND run with a local running club. Or live in your own home, work for any local corporation AND belong to a Self-Advocacy organization--or the other way around: work at a sheltered workshop AND be active in your neighborhood association--and your church.

And, in real life, that balance shifts. Prior to the Christmas pageant you might spend every waking moment at church... in the summer you spend less time there and more in your neighborhood at cook-outs...

My friend in Texas saw Dr. George Capone this weekend. From what she says,he spoke about health and adults with Down syndrome. My friend said he reported that depression in people with Down syndrome is a strong predictor of Alzheimer's disease, and he feels that a strong preventor of depression is healthy relationships with the other folks with disabilities. (He often presents at the NDSC conference which is in Sacramento this July--check him out!)

Food for thought...

The Kobayashi Maru: Lessons About NVLD from Down Syndrome

2009-05-24T10:00:00.005-04:00

This is my favorite Star Trek scene, from The Wrath of Khan where Kirk says, "I don't believe in the no-win scenario." Well neither do I!

As I have mentioned before, my son has a diagnosis of Non-Verbal Learning Disorder. For some unknown reason (though Karen has a theory!) I always posted more about Down syndrome than NVLD (or NLD as some folks say) until recently. (Here is the link to my first post on NVLD)

As the parent of a child with Down syndrome who was diagnosed at birth I had some definite advantages when my son was diagnosed with NVLD in the 4th grade. I had many connections in the local disability community, had expunged any disability prejudice that clouded my thinking, and I knew a lot about development, advocacy and rights. There is lots and lots of data available about Down syndrome and nowadays most of it is positively stated. And there is a well-formed and experienced community of families of people with Down syndrome to guide newbies along.

Parents of children with NVLD diagnoses get NONE of these advantages out of the gate. It is really pretty pitiful.

So, I want to offer a disability primer to ease the learning curve a bit for you. Some of this is mindbending stuff because of the society we live in, but trust me, if you get your head around this stuff you and your child will both be better off!

First about disability in general:

As it says in the DD Act:

Disability is a natural part of the human experience that does not diminish the right of individuals with disabilities to enjoy the opportunity to live independently, enjoy self-determination, make choices, contribute to society, and experience full integration and inclusion in the economic, political, social, cultural and educational mainstream of American society.

For more about the natural-ness of disability read here.

Disability means that part of your body works differently. Not better or worse, just differently. Some folks see, hear, get around or learn differently. There is no heirarchy--my near and farsightedness (!), my son's diagnosis of NLD, my daughter's diagnosis of Down syndrome and my friend's Cerebral Palsy are equivalent.

The sooner you come to the decision that disability is FINE, the better off you will be and your child will benefit from your belief in them--doubt is poisonous and they will get plenty of that from others. Too much fighting the disability gives the strong message to the child that they are not ok... and if you exhibit pity or unacceptance for other disabilities your kid will make the jump that disability (and they themselves) are bad. It will help all of you to get past this!!!

Now, about experts: Down syndrome is a chromosomal issue and there are literally hundreds of possible symptoms. No one with Down syndrome exhibits all of them--or even most of them! Down syndrome plays out differently in every single individual. As my friend Laura told me when my daughter was born, "When you know one person with Down syndrome, what you know is one person with Down syndrome!"

Because I know tons of families, I know there is a range and expect individual strengths and needs that don't necessarily follow a 'Down syndrome profile.'

When it comes to NVLD the literature implies that folks all present the same way. This is dead wrong. I know several people with the diagnosis and they are all quite different from each other. They sometimes have some commonalities, but they are all unique individuals.

The literature about NVLD is also FAR more negative than anything you read about Down syndrome nowadays. I think this is because it is a newer diagnosis. The literature out of the 1970s about Down syndrome was terribly discouraging as well, but has grown as clinicians, educators, parents, folks with the diagnosis and others have gained experience.

Trust yourself and trust your child FIRST. Be defiant about it! This is a medical diagnosis, it is not a script.

You will build a life that suits your child, you will stand up to naysayers, you will challenge systems that don't work, you will problem-solve and you will create--and your children will learn that from you.

You can do this.

Repeat after me:

You can do this!

Attention Parents of Young Children with Disabilities: The Fight Club Video and the Community Choice Act

2009-05-23T15:02:00.006-04:00

There is a horrible video from an institution for adults with disabilities in Texas where the employees forced the residents to fight for their entertainment. I know many parents of children who say they didn't see it and won't ever see it because it is so upsetting.

In a lot of ways I don't blame them a bit. It isn't that they don't care, it's that they hope to change future of the disability community by putting all their energy into building up their own child and helping them be the best they can be.

I applaud their efforts--I have done (and do) the same myself.

But because of this focus many parents don't get involved in disability issues, don't call congress or sign petitions. And this is a shame.

You know what the worst part about the "Fight Club" video out of the institution in Texas is?

It wasn't Willowbrook. In the legendary Willowbrook expose from the 1970s the facility was run down, the residents weren't dressed and few had had any education at all...

In the Fight Club video of 2009 the place looked decent, the men looked clean and modern and well dressed, many or all had clearly been taught much--they could speak and more.

And still they were victimized.

Like every other parent who watches that video my very hairs are standing up on end, screaming, "NO, NO, NO... NOT my child!!!! Please no..."

The sad truth is that to create the world we want for our children with disabilities we have to do more than bring them up. We must participate in creating the situations that will receive them.

We must get them ready for the world AND get the world ready for them.

The good news is we don't have to kill ourselves doing this. We don't have to make it our full-time (or even part-time) job. There are many, many ways to be heard and make a difference without becoming overwhelmed--honest.

First: get yourself a decent source of information. You don't need to watch all of the videos and read all the hours of congressional testimony yourself, but you need to pay attention to someone who does.

The National Down Syndrome Congress, The American Association of People with Disabilities, The Arc and more have government newsletters and send out action alerts to let folks know about the important issues.

Second: Read the e-mails you receive. Or at least a percentage of them (LOL!)

Third: Take an action. Make a phone call, write a letter, fax something. These are all short actions that add up to big impact. If you feel the need and have some energy to invest, join a committee or visit a legislator (or more than one.) Don't burn yourself out, just pick an action and do it.

Fourth: Forward the e-mail to your friends and family and ask them to help.

Right now there is a problem with Medicaid. It easily covers institutional care--it wants to pay for care to be given in institutions or nursing homes. It does not cover care in individual homes. (They call this institutional bias.)

This is a problem for people with disabilities (who get medicaid when they are unemployed, or considered uninsurable by their employers' plans) and for older folks who want to stay home as they age.

Now, care at home in neighborhoods is better. No one drives past an institution of any kind and wishes they could live there.

It is cost effective. They estimate that community living costs around 1/3 less per person than institutional care.

And if the nightly fighting from the Texas video had been happening in a neighborhood home SOMEONE would have heard it and complained.

Call your congressmembers. Tell them the Community Choice Act matters to you.

Creating the future your child will thrive in begins at home--and in the world.

We can do this together.

Let me know how it goes!

Transition is an Obstacle Course

2009-05-14T19:34:00.006-04:00

My idea for this post far exceeds my technical expertise (and my patience, I'm afraid!), but...

I hate transition. Actually I don't mind transitions so much, but Transition (with a capital 'T') stinks. I hated it when my daughter had to make the leap from Early Intervention to school, and now that she is moving to high school and adult living is the focus of everything at the same time that my son has a Transition plan to ready him for college I REALLY hate it.

But I am paying attention, Gentle Readers, and I am figuring out the path so I can pass the scoop along to you. The following is the grand tour of what I have gleaned so far:

The Transition Obstacle Course

Start: You begin in the Playground of the Past. It is familiar there, but it no longer fits. Your child has outgrown the slide and the swing and the sandbox, exceeded the age and height limits. It's time to go. This can be a happy or sad moment depending on how well it ever worked for you, but there WILL BE some emotional backlash. Prepare yourself.

Next: The Ladder of Information--this is a VERY high ladder with widely spaced rungs. The first rung will be the propaganda (brochures, etc) about your future options. Next will be their reputation in the community. Your next info will come from personally visiting the place or places and right up near the top is the rung called 'the inside scoop'. This rung is helpful, but may not exist in which case you will have to jump over the space--just don't look down.

At the top of the Ladder of Information is a high diving board. You will jump off the board and land on the Trampoline of Gut Feelings. If you are like me you will bounce around on that for a while.

From the Trampoline of Gut Feelings you must jump and land with one foot on each of two scooters (the wooden seats with wheels we used to use in gymclass--I will try to find a picture!) The two scooters will immediately roll away in opposite directions bringing you to the Split of Decisionmaking. Any compromises, contradictions, uncertainties or inconsistencies you encounter will roll the scooters further and further apart.

After the Split of Decisionmaking we move to the Hoopjumping portion of the course. Here you will encounter 3-10 hoops of varying heights and sizes, and any or all of the hoops can burst into flame at any time. At the very least you will encounter the hoops of qualifications, applications, and justifications--there may be more and you won't know about them until they are in front of you.

After Hoopjumping comes Platespinning wherein you will endeavor to keep all of the applications and information moving while the powers-that-be deliberate the fate of your child. This can be a very long phase. Very long. And exhausting--exciting background music helps.

After Platespinning you will be dumped into one of two destinations:

The Mud Puddle of Rejection from whence you will towel off and start all over again, or...

The Swimming Pool of Acceptance. You will swim in this pool for a bit, getting the feel of things. If it turns out to be a lovely, fun, idyllic swimming experience you will then leave the game.

If, however, the Swimming Pool of Acceptance turns out to be a filthy pit of vipers and sharks (or Fight Clubs) it's back to the beginning for you! (Note: some folks opt at this point to stay in the scary pool because going back through the obstacle course seems more grueling than dealing with the sharks...)

One major benefit I have found is that I do not have to face this course alone. There are people who can help make this obstacle course easier. There are Transition Specialists and Transition Projects around the country and I find great help from other parents of kids with disabilities...

And yet I still hate it.

Sigh....

Homemade Adaptation and Assimilation

2009-04-22T17:10:00.004-04:00

Barbara at Therextras is hosting a blog carnival this week about the adaptations we make in our homes to support development. (As noted by mommydearest at The QuirkFactor, there is no popcorn... There never is.... sigh....)

At first I had no idea what to include. The days of labels on everything are gone, I no longer have a big clock face with moveable hands on my refrigerator (not because my daughter is great at time-telling, but because the thing just disintegrated!) And I no longer have plastic links on my cupboard doors--some to keep them shut and others to extend the handle for better gripping... The junior bed and tricky doorknob covers are long gone...

But then I looked around and realized that we have made many adaptations for participation, which I guess does qualify as development. This is a sign to all you young parents. Though the accommodations you make at home may seem like a huge deal when you are looking ahead at them, you will assimilate some of them so thoroughly that you will forget you even made them (or I am having memory issues... nope, it's definitely assimilation!)

Laundry: My daughter is short. This is why we bought a front-loading washer and drier when our old models bit the dust ("Yes Honey, we NEED the new, fancy, more expensive model--it's for Jennn!"). Stepping on and off a step stool to load the washer was inefficient in the extreme and required constant stand-by assist, now I can say "put the dark colors in the washer" and she can.

Kitchen: Many accommodations here.
*We have 2 microwaves--one above the stove and then one on the counter for reachability.
*We have contained chopping and cutting systems so cooking can happen without cutting since I just can't get comfortable with knife skills AND we still want to eat!
*I used to store things in the lower cupboards so that putting away dishes could be for all my kids, but we don't need to do that any more.
*We use pinch clothespins instead of twisties for ease of opening wherever possible. *I have oatmeal and brown sugar cannisters because the packaging was just too challenging, those cannisters were chosen for ease of opening for my daughter...
*I also buy the zipper plastic bags with the slider mechanism. My daughter can open the plain ones, but she can't close them reliably.

Posted checklists come and go around our house as needed.

Bath: The 'safe temperature zone' is marked on my shower faucet with crayon.

I can't think of anything else at the moment... but that is because we have assimilated them so well (and don't you forget it! :)

Picture from here.