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.

FREE APPROPRIATE PUBLIC EDUCATION - In order to comply with the federal mandate (Public Law 102-119, known as the Individuals with Disabilities Education Act, Part B (34 CFR Parts 300 and 301 and Appendix C) that all disabled children receive a free appropriate public education, a school district must provide special education and related services at no cost to the child or her/his parents.

I read with interest recently a fairly in-depth article in the San Francisco Chronicle a story titled, “Extra-Special Education at Public Expense”. Parents of children with Down Syndrome will certainly identify with the issues surrounding a “free and appropriate public education”. The articles author outlines some examples of what appears to be excess. They certainly sound excessive but with two sides to every story I will reserve my complete judgement. I do fear that articles like this will provide fodder for those groups and individuals who have no interest in a strong special education program and will use the talking points to illustrate their position. Lets face it. As parents of children with disabilities we have all been exposed to parents and professionals who would be satisfied to see the old days of “special class” where children with disabilities were warehoused in a couple classrooms and kept segragated from the school population. I have personally encountered parents of normal and gifted children who believe fiscal resources “wasted” on special education would be better spent on programs and facilities for their normal and so called gifted child.

My son with Down Syndrome and Autism attends a private day school in his community that meets his needs extremely well. His tuition is funded through his school district. We experienced two years of the public school districts idea of “free and appropriate” and it fell short of meeting our sons needs. The schools idea of providing our son an education left him with no measureable progress, two years after entering the program. When he went to the private school he was unable to attend to any task over 30 seconds. Today this child is able to travel from class to his individual therapy appointments in other parts of the building semi-independently, interact with classmates and participate in group activities. When the school district can demonstrate to me that they have teachers who have a sincere interest and comittment to including all children in their classrooms, that the facilities and resources are equal to what the “normal” children receive, that adequate supports including additional classroom aides and teaching assistance are present than I’ll begin to consider the local school facilities again. My biggest fear for my son is whether the public education system can protect my son from physical abuse and emotoional abuse. I’m not looking for the best education money can buy… just the most appropriate for him.

I don’t want to paint with a broad brush. We have friends and know about wonderful success stories of school districts and families who have worked together to provide wonderful educational and training programs in their local school districts. The disabled student benefits, the other students benefit and the community benefits. We need more of these WIN-WIN-WIN situations for our children.

Some Links of Interest:
The Education Law Center
http://www.ed.gov/about/offices/list/ocr/docs/edlite-FAPE504.html

http://www.wrightslaw.com/info/fape.index.htm

I came across this story today on the Ireland Online web site that announced the International Down Syndrome Swiming Championships. Wow! what a cool event! I was not aware that there was such an event. I am of course aware of Special Olympics activities but had never heard of this international championship before. My son is truly a fish in water. He enjoys alot of activities such as bowling and indoor soccer but swimming is his number one sport activity. He is fortunate that he has a indoor and outdoor pool at his school and he greatly benefits from swimming lessons at the Community YMCA of Eastern Delaware County in Ridley . On further research I found the web site for the Down Syndrome International Swimming Organisation where you can get the Rule Books, review records and obtain applications. There is also a special page there for the USA team with contact information. I don’t think we will be making it to the international event this year but it sure would be a great goal to plan to go someday and spend time with inspiring athletes. Of course make sure that you are healthy before getting into the swim of things. All athletes should be monitored for Atlantoaxial Instability.

Links In This Article

Alot of times when people find out that our son has Down Syndrome and Autism, they feel the need to say they’re sorry. I always say the same thing, “don’t be, because I’m not”. Do I wish that he had more language.. you bet. Do I wish that any change of routine wouldn’t put him into such a “tailspin”, of course. However, I wouldn’t change him. I love him just as he is. I love the fact that he is so empathetic when someone else is upset or in pain. I love his laugh and the look he gets when he is delighted by life. He really knows the true meaning of joy and expresses it everyday. He doesn’t care how much money people have, or what they do for a living or what their IQ is. He only knows to look for and see the goodness in people’s spirits. What a great example he is for how we should all live our lives. So don’t feel sorry for me. I feel sorry for anyone who doesn’t know this wonderful boy.