Where Do I Even Start????

Yes, it HAS been a while.

Just over a year ago I took on a new job... actually a new carreer, and to be honest with you, it ate my lunch. I did fine at work... during the day... at my job. But when I came home at night I did not have two brain cells to rub together.

But... I did have a dear daugther with a rare and devastating condition (let's talk about that later, shall we?) A college kid... other issues... and a husband with a commuter job.

Advocacy took a back seat.

In fact Advocacy sat in the 'way back' and I just threw graham crackers at it when it sounded hungry and hoped for the best.

It seemed like it had to be that way. I needed to survive these changes.

But what the heck has been going on while I was away?? We have been SLAMMED!!! I am not pleased.

As one of my favorite characters (in the only movies I ever really watch... sigh...) says "Prepare to meet Mrs ANGRY EYES!!

Do NOT ever tell me again that fictional stories  popularized by the media don't have anything to do with the treatment of people with disabilities--especially cognitive disabilities--ever again.

Ever.

Read this article... go ahead. I will be here when you get back!

This article says that a judge in Texas cited Of Mice and Men (a story by John Steinbeck) as justification for executing a man in Texas with a low IQ for a crime in which he played role.

Executed.

Dead.

On the basis of fiction.

Was he the mastermind of this crime? Um, no...

Were the supports in place to help him interpret his circumstances and make appropriate life choices on a day-to-day basis?

Obviously not.

Marvin Wilson could not possibly understand the ramifications of what happened.

AND the supports to make him successful were clearly NOT in place,

Despite this, the people who should have been helping him are alive and he is dead.

(And some will tell you execution is actually MORE expensive than a life sentence, but I digress...maybe only  for people who have someone to appeal???)

So... Fiction matters. Tropic Thunder matters. The "R-word" matters.

In fact they could be a matter of life and death.

I am right. Just accept it.

People, better educated and with more power than you or I will ever have, are LISTENING to fictions. Are INFLUENCED by them. Are making life decisions for all of us based on them.

Steinbeck's own son put out a statement saying he was appalled that his father's story was being used to justify the killing people with disabilities.

Frankly, I hated Of Mice and Men in high school.

Because it was effective.

And horrifying. Great writing, horrible meaning.

But Sr. Margaret Mary said that the point was NOT that people with intellectual disabilities are dangerous, but that there are situations that could make you question your accepted mores... and she was NEVER wrong. Really.

Yet, if it had come out during my daughter's lifetime I would have been first in line at any protest. I would have seen it as dangerous and would have taken my lumps for saying so.

I read.

And people without subtlety always end up with power.

And yet I was not part of this discussion. I was distracted.

Good heavens.

Forgive us Lord, for our treatment of Marvin Wilson.

Forgive me for not doing my job to ensure Your mercy and justice are heard.

I am sorry. Amen.

Sorrow and Prayers

Ricki, the daughter of my blog-friend Ruth who lives in Israel died in her sleep yesterday. I am so sad for her mother and for her family. Please hold them in your thoughts and prayers.

Disillusioned: SSI. Painful.

Went to Social Security again today for Jenn... May I say UGH?

The service I received, for Jenn was very good. The whole experience was, once again, UGLY.

This was my second experience. The SociaL Security office in our town looks new, and clean AND is absolutely the least confidential place I have ever been.

Ever.

Last time I was there I was politely treated. The woman who helped me was pleasant, professional, knowledgeable and helpful. I have no complaints at all.

AND I heard all about a guy who was in prison but couldn't quite remember when he had gotten out. This was while I was in a 'private' meeting in a carrol. Because I had an appointment.

I am quite sure he now knows  all of the particulars of my daughter's life as well.

Because he also had a 'private' meeting.

Uh huh.

Today, I did not have an appointment. I had a small issue to fix. Small enough that it was dealt with at the window (by a very helpful woman who was very patient with my anxiety.)

While I waited to be served however, I heard all about someone who had been injured who had no idea how to get by, someone who needed to provide info about their divorce and more to get what they needed, some serious disdain handed out to a person who didn't know how to work the SSI welcoming computer at the door, and someone whose birthdate had been wrong for SSI for many years--I can tell you exactly how many--and suddenly SS saw it as a problem today (which was true, rules have changed--yes, I heard that too!) ETC, ETC, ETC....

Now, this is me. I was embarrassed and trying NOT to listen--and I have filtered this considerably. So think of what I missed that others could have picked up. One person was distraught (and a little loud, but seriously, they should have been in an office!) about how many years they had worked, how many jobs they had worked, that they had always had insurance, etc until this awful thing had happened in their life... (yes, I might know what that was...)

Then two people started a conversation about motorcycles which served as a BLESSED filter...  They were chastised for talking so people couldn't hear when their numbers were called.

After exposing themselves to God and everyone, these hurting folks had to turn around and walk through the waiting area/audience to leave.

Perhaps it is because I work in an environment where HIPPA is taken seriously (so much so that I beat myself up if I mention someone's name... ever!) Perhaps it is because I have the luxury of being well-treated most of the time.

Or perhaps there is some purposeful decision to make people who need SSI 'pay' for their existence through humiliation??. I don't know, I really don't.

To me this is a huge breach... but not un-fixable.

I will say, it stinks.

That is all.

High School Memories with a New Twist

First, credit absolutely goes to the folks who discovered the error and corrected it... but WOW what an error!

A highschool in Mesquite Texas had a section in their yearbook where all the kids with disabilities were pictured with a list of their diagnoses... You can read about it here. (We will leave discussion of their use of outdated terminology for another day!)

My first thought was that the kids with disabilities either didn't have any happy events from their school year to highlight--or if they did that no one noticed them...

But, apparently the school has said that they were trying to 'honor the students for their struggles.' (I will pause while you gag!)

Kind of a novel concept for a yearbook really. They should do it for all the students...

Can you imagine all the family problems, poverty, acne, bad breakups, addictions, social struggles, hormones, academic challenges, mean-girl-itis and mean-boy-itis, bad hair days etc, etc, etc that high school kids contend with actually made it to the pages of the yearbook... probably would make the most honest, painful yearbook ever... that no one would buy or show their kids EVER!!!

Traditionally the message of the HS yearbook is that among all of the true pain of living and adolescence some great, fun things happen... I am glad this school realized this was true for ALL kids before their yearbook got distributed.

Wrongful Birth Suits: A No Win Situation...

This article makes me sad.

Heartsick actually, on so many levels...

The article starts by telling us that the family are good people. They only sued their healthcare providers for the money.

I have also fought for the money to get appropriate healthcare, education and other needed services for my daughter who also has Down syndrome. I have advocated with school districts, legislators, agencies and more to get what my child needs.

Fortunately, we have never been in such dire straits that we would consider saying that we would have aborted her if only we had had the chance. We have always been able to build, craft, find or get what she has needed thus far. This family's situation is heartbreaking.

I feel bad that the statement made by the parents about wishing they had aborted their daughter was repeated throughout the suit and in the media... this child will know about this. And even if she doesn't, everyone around her will. That will be hard.

Knowing the way these high-profile events strongly reinforce society's outdated prejudices about disability is upsetting as well.

I'm reminded of Jerry Lewis's controversial telethons for the MDA. The telethons with their requisite tear-jerking, did bring in the immediate money the organization needed. But the high-profile telethons heavily sold the belief that people with Muscular Dystrophy and other disabilities are pitiable, incapable and just 'less.' Everyone with a disability lives in the shadow of those telethons. Societal barriers are by far the hardest part of disability--they affect access to schools, neighborhoods, employment, etc more than any other aspect of disability.

(And that lack of access is what drives people to hold these desperation events... a NOT-YET ending cycle...)

We work on awareness, stopping the R word, More Alike than Different campaigns, but one of these cases full of anger and tears moves us all back again...

Beyond all this, it is easy to see that healthcare providers who DO suggest abortions in cases of things like Down syndrome (where needs are not usually dire and improving every year) could also be sued and lose just as badly... since the 'appropriateness' of such a suggestion depends on the patient's subjective feelings about disability, not on objective data. (Many people actively seek out babies with Down syndrome to adopt--therefore Down syndrome is not empiracally bad.)

No one won... no one will ever win in these situations.

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

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

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

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

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

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!

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

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

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

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

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!

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

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

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...."

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!

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!