Blog For Down Syndrome

Our lives have been in a whirlwind for the past 6 weeks and I haven’t had a lot of time to update the blog here. Donna’s mom broke her hip back in the beginning of April. We have been on the fence for the past year about moving in to take care of her. It’s a real balancing act to respect her space and dignity but also keep her safe and healthy. So the hip fracture forced the issue and here we are now all living together under one roof. She was in rehab for 3.5 weeks so we had some time to get some work done on her house and most of our belongings moved in. If that wasn’t enough I started a new job after being with the same company for 8 years. Shortly after this all hit my mom in New Hampshire experienced some serious complications following a specialized cornea transplant surgery for Fuchs Corneal Dystrophy. I may need to start blogging about parents getting older and caring for them!

Our son Matt (14 yrs.old Down Syndrome/Autism) had a real tough time with the move. We talked it up a lot and encouraged his teachers and staff at school to talk about it with him too. When the day came for the move we felt the best way to handle it is to take him to school, get his new room at the new house all setup with his personal stuff and just go there after school. We didn’t have the time to transition him and frankly I think that would have been more disruptive and confusing for him. Arghh!! The first few days were really stressful and we felt so bad for him. He would collect his “security” toys and belongings and wait at the front door to go home. We had a lot of lower lips stuck out, tantrums and lots of interrupted sleep. Slowly but surely as we all got into our new routines and he was back to the familiar surroundings of school he really settled in well. You can tell he is still waiting for someone to come out say “OK time to go home” but he is gradually marking out his new space and adjusting. We still have the other house and we are thinking maybe in mid-June taking him over there and letting him see the place empty. The good news is he has more space at his new home both inside and especially outside. At his “old house” we were right on a very busy street and he couldn’t go outside and freely play without close supervision. I went outside with him over the weekend and it was wonderful to see him be able to move around more independently.

We just received some great news last Friday. We had a special meeting at Matt’s school with his current school district representatives and the new school district we moved to. We were really nervous that the new school district wouldn’t fund the placement at his private school that he has been at for 9 years. We went “well armed” and prepared. We had a education advocate from our county advocacy organization (The ARC of Delaware County) attend the meeting with us. Everyone was in agreement that Matt was where he needed to be and the new district will be funding his placement. Sweet!

Donna’s mom is doing real well and regaining her independence. My mom is still struggling with corrective surgical procedures for her eye but our Aunt Jeanie who had come up from Florida to care for her through the surgery has been tremendous. My new job is going great. I’m working with some great people and I feel like I’ve landed in a good place. Donna as always continues to be the rock of the family, managing to keep all of this together somehow.

I can’t say enough about how wonderful all our friends and people at Matt’s school have been. They have been tremendously supportive and helpful. I don’t know what we would have done without them. We really are so thankful to have such wonderful friends who care so much about our family.

Matt is smiling more each day and continues to bless our lives in so many ways. I think this change is going to do us good!

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.