A Family for Every Child: Adopting a Down Syndrome Child

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We first began our journey through the adoption maze nearly 14 years ago. We began by working with a state agency and we were open to considering a child of any race, age, or ability. At this time we had only a seven- year-old son who had been born to us. We inquired about many children listed in the state exchange book with no luck. Eventually our social worker confessed that because our son was so bright and active, she would not want to see us with a child who was not able to put on his own coat and run out and play! We were both mystified and appalled.

We contacted a private agency that was affiliated with United Way. They had a low service fee at that time for families interested in adopting children with special needs. We contacted them in December, completed our homestudy by mid-March, and were quickly connected to Janet Marchese of the Down Syndrome Adoption Exchange in White Plains, NY. With her help and the cooperation of another private agency in our own state, Andrew, a 4-week-old infant with Down Syndrome, became our son. We will always remember the phone call telling us about Andrew. We were so overwhelmed that someone would give us someone so good. Our excitement and joy were boundless.

We did not heed the warnings of our social worker to make sure we saw all the medical records before we saw our baby. The records followed the baby by about two weeks. As disheartening as those early reports were, we believe that we still would have adopted our son regardless of their content.

Not everyone agreed with our decision to adopt a child with special needs, and most were less than subtle about it; others did not even believe in adoption in the first place. I quickly grew tired of hearing what "wonderful people" we were. I would explain that we had wanted a child very much and were not doing it to be charitable. At the medical clinic, two professionals debated openly whether or not we had adopted a child with Down Syndrome out of religious conviction! While I believe that every child has a purpose and a place in the world, we never chose to adopt out of a sense of duty or responsibility.

Today, Andrew is as strong, stubborn, fun-loving, active, demanding, surprising, Nintendo-playing, artistic, and sports-loving a boy as you can find anywhere. Still, we have had some problems, especially as they relate to his school needs in our local district. I have explained to the school that our first priority for Andrew is the preservation of his dignity. To help with this goal, we brought in a profession from the university to help us develop a behavior management plan for Andrew based on non-aversive methods.

Unfortunately, however, the district decided that it could not support the methods recommended. Although we went to great lengths to work things out, we felt ultimately that the school could not be trusted to carry out an appropriate IEP (Individual Education Plan) unless I also attended class with Andrew, so once again, we find ourselves doing the unpopular thing: home schooling.

We work on academics on the computer as well as social; skills including appropriate behavior and speech. I have also included practical life tasks such as kitchen and yard maintenance skills. We have decided to homeschool our son until he reaches junior high, by which time we should be living in a better district. The constant turmoil that the district was causing in our life was taking away the joy that we had felt when we adopted our son and I decided that we needed to take that back. I have often felt that they made it so difficult because they wanted me to give up on Andrew so that they could have their way with him.

My confidence is growing with each new day and accomplishment. "Calm down, calm down," I remind myself. "You can do this!" Each day with Andrew brings its own challenge, yet some ways, Andrew's problems have not been all that different from those of our older son, an excellent student whose body was suddenly "taken over by an alien" when he turned 13 and his hormones kicked in. No longer a person that I knew or understood, we sought advice from his guidance counselor. With her help and reassurance, coupled with our own strength and determination as parents, we made it through his adolescence, just as we will make it through Andrew's. Regardless of the way either of our sons entered our family--through birth or adoption---we rise to the challenge each brings, love them equally and without reservation, and take responsibility for the way things are turning out.

I continue to read lots of books on parenting children with special needs and I talk to others who are working through similar issues with their children, whether born to them or adopted. We also try to keep current with information about Down Syndrome, behavior management, and educational/transitional services which will be valuable in planning for Andrew's future. Andrew uses every ounce of his potential to face life squarely. We can do no less.

Would we make the same choice again knowing what we now know? Absolutely! An infant with special needs would be a wonderful addition to our family just as Andrew was, but we have found that it is difficult to break these children out of the state system while they are young when early intervention can make an impact on later development. Meanwhile, we keep our homestudy current "just in case." Any ideas?

Note from the author:
All the frustrations I have suffered as I've negotiated the adoption maze help me understand where Andrew comes from. He tries so hard and tries not to accept any limits. We are doing things our way with a little give and take on both sides. Often I feel like a tank ripping through a mine field. It is not Andrew's fault, but the fault of the ignorance of the individuals that we must deal with outside of our home. These almost 11 years with Andrew have been more like a set of books than an article. All my disappointment regarding adoption would fill another set.

Recently I found out that if we wanted to adopt a child through out state office we would have to get a private homestudy done, but if interested in a child from Child Protective Services, they would do the study without a fee. I called everyone three times and wrote letters to no avail. I feel so sorry for the children who remain separated from a family of their own by bureaucracy, but am hopeful that changes will be made. Kansas recently developed a model for children in foster care designed to move children into adoptive homes by making it more profitable than the current foster care system.
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