Monday, October 25, 2010

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.

Monday, October 18, 2010

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.


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.

Thursday, October 14, 2010

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!!

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.


Monday, October 11, 2010

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.

Wednesday, September 29, 2010

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.


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?

Friday, September 24, 2010

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.

Tuesday, September 21, 2010

"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?

Saturday, September 18, 2010

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!

Monday, July 05, 2010

He Did It!

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!)

Wednesday, May 19, 2010

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

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!!!

Sunday, May 16, 2010

Running Late

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!

Monday, May 10, 2010

The Carnival's Coming!!

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!!)

Sunday, May 09, 2010

Happy Mothers' Day

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!

Saturday, May 01, 2010

Blogging Against Disablism Day 2010: It's Everywhere

Blogging Against Disablism Day, May 1st 2010

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 unconsciousThis 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!)

Wednesday, April 28, 2010

Autism Awareness Month: Update on Arrest Story

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

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.

Tuesday, April 27, 2010

Love This

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

So, what do you think???

Monday, April 26, 2010

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

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!

Sunday, April 25, 2010

I've Gone and Done it Now

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?


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!)

Friday, April 23, 2010

Tis the (Blog) Carnival Season!!!

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!

Thursday, April 22, 2010

Note to Self: Never Read the Comments!

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!"


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.

Tuesday, April 20, 2010

Autism Awareness Month: So Much to Teach

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.

Monday, April 19, 2010

Childhood Expressions

Kikkerland Imperial Led ChandelierBarbara 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!

Sunday, April 18, 2010

Autism Awareness Month:Book Review:Autism and Allelulias

Autism & Alleluias
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.

Saturday, April 17, 2010

Balance... Yeah, It's a Problem

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??

Sunday, March 21, 2010


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.

Monday, February 15, 2010

1840 Part Two

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.

Sunday, February 14, 2010

Wow! Some Folks are Just Too Clever

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

Saturday, February 13, 2010


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!

Friday, February 12, 2010

R-Word Firestorm

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.

Tuesday, February 09, 2010

Wrong Again: This Time About Palin and Limbaugh

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.

Sunday, February 07, 2010

This and That

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!

Friday, February 05, 2010

Rush Limbaugh Brought Tears to My Eyes Yesterday

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.



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.

Thursday, February 04, 2010

Guest Post From 'A Frustrated Grandmother"

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.


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