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.