Blog For Down Syndrome

My wife and I were unable to have our own children and sought out adoption as an alternative to start our family. Having heard and read stories from others and in the media we were not optimistic that something would happen for us given the time and costs involved.

We learned of an adoption agency in Philadelphia called, Option of Adoption that later became Blue Rose Adoption Services. They specialized in adoption of special needs chidlren and children of different ethnicities. In a little over 45 days we went through the application process, training seminars, and home studies when the phone rang and said we have a 3 month old baby boy with Down Syndrome available for adoption, are you interested? WOW! What a moment! Of course we were and so we set out on a crash course in the adoption system and in parenting. That was the first week of March 1992. By April 17, 1992 he was in our arms in our home. Obviously I am skimming over some of the details that may be important to someone reading this who is considering adoption or even placing their child up for adoption…. but I’m trying to avoid writing a novel. If anyone has specific questions about our experiences please feel free to post a comment or email us.

The adoption agency here in Philadelphia was wonderful to work with and always supportive of us. We continued to socialize with the employees and other adoptive familes for many years until the agencies dissolved and people naturally drifted apart. They will always hold a fond place in our hearts.

My over all impression about adoption… If money is a constant issue then that should raise red flags. People deserve to make money and pay their expenses for their hard work and expertise but not at the levels approaching extortion. Follow your gut instincts. It’s hard work. As hard as it may be, be prepared to walk away. Prepare yourself to go on some emotional as well as physical journeys. The trip is worth it though.
The adoption agency in our sons birth state of Massachusets is a whole other story though…. WHAT BASTARDS they were! Unfortunately I hear this can be typical. We arrived in Massachusetts the day before and called them checking to make sure all the “t’s” were crossed and the “i’s” were dotted and yes they said everything was fine and we’ll see you tomorrow. We arrived promptly for an 11am appointment, signed all the paperwork and shortly thereafter were united with our son when the foster mother who had been caring for him arrived. We don’t remember the fosters mother name but we are so thankful for her savy. She walked past the adoption agency staff and placed our son in our arms, exchanged some small talk and split. We later realized that she knew how this agency worked and that it was best for her to be gone. She was definitely one of the many angels we came across in our adoption journey.
For our support my mother, sister, nephew and grandfather were there from New Hampshire. The next thing we know the executive director enters the room asking us about their $4000 payment. Huh??!@! Our adoption agency in Philadelphia specifically told us NOT to pay any other fees. We left to go to her office while my mom cared for our “newborn”. We got on a conference call with our agency in Philadelphia and the two executive directors proceeded to fight it out. When I got on the phone I was told I needed to be prepared to leave without our child. Yeah right, too late for that, I knew in the deepest part of my soul that was not going to happen. I told the executive director what I thought of her tactics and left the room with my wife still there. I got our son bundled up in a car seat, told the receptionsist if anyone needed me I would be out in the parking lot in my car. I left my family and wife to straighten out any details and marched out, with my new son in my arms. I loaded him into the car and got ready to go. I don’t believe that an agency that specializes in placing “normal white children with rich white families” really wanted to be left with a 3 month old infant with Down Syndrome in Foster care. My gamble was right. It was only later that I found out that my tenacious wife had gotten on the phone with state agencies in our home state of Pennsylvania and was raising hell in the executice directors office.
Shortly thereafter, with signed documents in hand,we said our goodbyes to our family and we were heading down the turnpike NOT having paid the $4000 ransom and headed into a 13 hour freezing rain and sleet trip to Philadelphia. None of that mattered though because we had our beautiful child with us and in a weird way we sensed our tiny car was being guided home. We often refer to this whole experience in Massachusets and the drive home as our labor pains.
(Maybe sometime I can write about my wife and I doing our first diaper in a McDonalds booth right off the turnpike. We were clueless, but managed )
By definition this was an open adoption. We had written early on to the birth family and sent pictures. The birth-father has contacted my wife several times over the past 14 years by phone but I have had no contact with them. Neither of us have had contact with the birth mother. If I did meet them I would hug them and sincerely thank them for giving us the ultimate gift of their child to us that has enlightened our lives.

Adopting Matthew is a daily reminder to me that there really are miracles in life. I have never felt so full or so loved or loved anyone else this way. I have nothing to compare it against. I know I am loved and respected by my wife, family and friends but to steal a phrase from Jerry McGuire, “Matthew completes me”.
Despite a bad experience in Massachusets adoption was the most wonderful thing that has happened to my family. I would hope that other people reading this can open their hearts to adopt a child or if your are considering that you can’t parent a child with a disability that you consider the option of adoption. You will be loved and blessed.

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.