Blog For Down Syndrome

It’s easy to show adorable pictures of my beautiful son , and a little harder to talk about his education, socialization and health issues. But thinking about, talking about, writing about, what happens to him when we are no longer here to advocate for him is very hard. The purpose of this blog isn’t to just spread warm fuzzies.

An article appeared today on a newspapers web site reporting on the death of Rusty Scardina a 33 year old man with Down Syndrome in Florida. The article raises many points and questions about Rusty, his life and his care. One point that jumped out at me was that he was known to have obstructive sleep apnea (OSA). The article doesn’t mention what type of treatment he was receiving for it such as CPAP therapy, surgical intervention or dental mouthpiece. Persons with Down Syndrome are known to have a higher incidence of OSA. There is a good overview article at the Down Syndrome: Health Issues web site run by Len Leshin, MD on OSA and another at the Down Syndrome Information Network Information web site.

I don’t know Rusty or anything about the system that was responsible for his care during his lifetime. But I’ve read this story before… just different people, places and time. Something is broken in how our society decides how it wants to care for its disabled. I watch the news today and hear pundits opine, politicians pontificate and union members demonstrate about who is managing our eastern seaboard ports. I don’t hear voices being raised in the same way for Rusty and the issues surrounding the lives of how our society has chosen to provide for its disabled individuals. Maybe my analogy stinks but you get the drift. No doubt huge strides have occurred in the past 30 years in how we care for, educate and legislate for the disabled. But there is no point at which we can sit back and “maintain” the existing systems or say we’re satisfied with where we are at.

The policy statement from the The ARC of the United States frames the discussion this way;

“The primary goal for all persons with mental retardation and related developmental disabilities is to enjoy and maintain a good quality of life.”
“Quality of Life. People with mental retardation and related developmental disabilities must be able to live the lives they choose and have a good quality of life.”

(you can read all the the position papers from The ARC here)

“….live the lives they choose…” I don’t know that Rusty had a lot of choices during his life. As parents, family members and as a caring society we need to plan for the future and advocate;

• Advocate for quality services today that foster choice.

• Support medical research and care

• Make adoption an option

• Educate our neighbors and communities

• Engage our legislators in ongoing dialog and keep it going. Do you know who your legislators are?

• Stay involved in your school districts.Question authority!!

• Support better salaries, benefits and working conditions for caregivers, special educators and therapists.

• Join, support and participate in your local advocacy organizations.

We parents, family members, friends or just people that know, support and love a person(s) with developmental disabilities can NEVER sit back and relax. Unfortunately the system seems to be only as good as the “moment in time”. One moment everything seems to be going well and the next it’s a disaster waiting to happen. A support coordinator (case manager), teacher, direct care worker, supervisor, administrator, school superintendent, etc. can make or break the “system”. They can assist self-advocates so that they can live a life rich with choices, or they can continue to do what has happen to Rusty and countless others like him, see him as only an “case” that needs to be handled and not handled well.

There are many, many questions that need to be asked in what went wrong for Rusty. The question that continues to echo in my heart and head is how in a nation so, rich and powerful as the US can we continue to be getting this so wrong.

P.S. - A month for this man to be buried due to lack of funds? What’s up with that?! What a insult and tragedy.

When our son was 3 or 4 years old we started suspecting that there was more to his overall disability picture than Down Syndrome alone. He displayed autisitc tendencies like not wanting to experience physical touch, being obsessed with “sameness” and displaying sterotypical repetitive movements. Since both my wife and I have previous experience with working with disabled individuals we could see it but it was difficult to express our concerns to medical and education professionals. Even harder was trying to explain it to friends and family. You sometimes feel like that people think you are grasping for other reasons to explain the lack of developmental milestones. We are fortunate to have great pediatricians, access to world class medical facilities and a top rated private school for children with disabilities. Over time we were able to get our sons dual diagnosis added into his official records and IEP. This has helped us alot in obtaining supports that we not have otherwise been able to qualify for. I recently came across a well written article by Glenn Vatter on this very subject that was written in 1998. Click Here to read the entire article. Here is the synopsis:
Synopsis

As many as ten percent of persons with Down syndrome may also suffer from autism. Exact data is difficult to obtain. Many cases go undiagnosed, or are diagnosed at a later age. Many diagnosticians are unawares that the two conditions may exist or are reluctant to apply the second diagnosis. Autism diagnosis is much more complicated than Down syndrome; there is no blood test, genetic marker, facial features, or other characteristics that apply to all autistic persons. The diagnosis is subjective, depending on meeting observations of certain behaviors. Diagnosis and treatment of autism is much more critical than for Down syndrome. Without early detection and intervention the life of a person with autism may be much more limited than that of a person with Down syndrome and often results in autistic children living in a residential school rather than at home because of inability of the parents and the school system to cope with the child’s behaviors.