Tuesday, September 11, 2007

Blogging for Justice

Please read this story. Spread the word if you choose. I don't know this family personally and I don't know any more details than what I have read here. I do, however, feel very strongly that their story should be told. Why would anyone believe that having a sibling with special needs would be detrimental to a typical child? I thought by now, in the 21st century, attitudes had caught up to legislation. I guess we still have some work to do. No family should be penalized because they choose to adopt a child with special needs. No child should be penalized because they have a sibling with special needs.

Before having children I worked briefly at a non-profit dedicated to publicizing the need for adoptive homes for children with special needs. The children ranged in age from newborns to teens. They had a variety of special needs such as Down syndrome, autism spectrum disorders, and Fetal Alcohol Syndrome. Some of them were considered hard to adopt because they were part of a minority group or had siblings they hoped to stay with. I remember wondering how caring for a newborn with special needs was somehow different from caring for a typical child who was later injured in an accident? What would make a parent ok with one situation but not another? Now, I want to make it very clear that I am not against adoption nor do I think people choosing to give their child up for adoption are doing the wrong thing. On the contrary, I think that is one of the bravest things a parent can do. Without adoption I wouldn't have a wonderful nephew. My husband and I talked a lot about adoption before we got married and we may still decide to add to our family in that way someday. But to me, making that choice only out of fear of the unknown or fear of a disability seems misguided. For a variety of reasons I eventually left that job, but I often wonder if God didn't bring me there to think about things like that knowing that P. was in my future.

When I talk about my kids and mention P.'s Down syndrome I often get what another mom referred to as "The Look." People don't know how to react. You see their interest slide away and they change the subject. Should I not mention something that is just as much a part of him as his hair color or his love of ice pops? If I'm not uncomfortable, why are they? If they stick with the conversation, many people comment that caring for a child with special needs must be difficult. It must be exhausting. Yes, it is those things sometimes. They sometimes say that God only gives special children to special parents. If that were the case, He surely would have chosen someone with more patience and more money. I'm not any more special than you are. In fact, if God had asked for volunteers to raise a child with special needs, I would not have been jumping up and down yelling "pick me! pick me!" What these folks cannot know unless they have lived it themselves, is how (for lack of a better word) special having a child like P. really is.

Before having P. we didn't know that much about Down syndrome. When he was diagnosed at one day old, we were frightened. Frightened of all the unknowns: what kind of medical issues would there be, what would he be able to do and not do, would he be able to live on his own, who would take care of him after we're gone? Some of those things are not issues anymore, some of them never were. And for the stuff that's still unknown, we've learned to wait for the answers and take them as they come.

Here is what we do know without a doubt: P. is a participating member of our family. He is not "less-than" his unaffected twin. He's different from his brother, just as he would be if he was a typical child, with different likes and dislikes and different abilities. He has taught us more about life than we can ever hope to teach him. Our marriage is stronger than it might have been otherwise. His brother is more compassionate and empathetic than he may have been otherwise. We all are. His enthusiasm for life and excitement to see what each day will bring are things I am trying very hard to emulate. He will be a contributing member to society in whatever capacity is right for him. He is loved by a large number of family, friends and caring professionals. He loves us all back. He is entitled to all the rights and privileges any other child enjoys, not the least of which is a loving, safe home.

Do I sometimes wish that P. was not disabled? Sure. Do I wish he was anyone else but exactly who he is and who he will be? No, not ever in a million years.

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