“Special Needs” – What’s in a Label?

Uncle Elvis

This is my brother, Uncle Elvis. Uncle Elvis joined our family through foster care when I was a teenager and he was three years old. A few years later, our parents adopted him and he has been part of our forever family ever since. You can probably tell from the photo that Uncle Elvis has some special needs. The oxygen tube is right there on his face, for starters. If you’re medically knowledgeable, you’ve probably already picked out the tracheotomy scar at the base of his throat. You can’t see most of Uncle Elvis’ special needs, but trust me, he’s got plenty more than just the oxygen and a scar.

Isn\'t he adorable?

This is my son, Tonka Tim. See the scar on his lip? See his crooked little nose? Tonka was born in China and he had a cleft lip. “Cleft lip” implies that it was just the lip, but actually, the cleft went all the way through his top gum into the hard palate, and right up his face through the nose. Tonka’s lip was repaired before we met him, but he still has a small hole between his mouth and his nose, and some of his top teeth are kind of coming in sideways due to the cleft in his gum.

When we first were planning to become parents, Mr. Fixit and I discussed the possibility of adopting a child with special needs, either from Children’s Aid here in Canada, or from another country. We were too scared to do it at the time. Children’s Aid had helpfully sent us a six-page document with hundreds of questions, each worse than the last. “Could you adopt a child with mild developmental delays? Could you adopt a child with moderate developmental delays? Severe developmental delays? Could you adopt a child that has suffered sexual abuse? How about a child who has sexually abused another child? How about a child that hurts animals? How about a child who will never walk or talk or live independently?” It was a terrifying document and by the end of it I was furious. I felt as if we were being asked to take in the children to whom society has already turned their backs. When my parents adopted Uncle Elvis, they were assured that all of his delays and needs would disappear with time and love. I had seen that my parents ended up with more than they bargained for, and I wasn’t going to let that happen to me too. Besides, special needs children are generally not available for adoption as babies, so in addition to the scary medical needs, there is the complicating factor of the children being older at adoption.

After we’d been parents for a while, Mr. Fixit and I realized that both of our daughters, adopted as non-special needs infants, had their own particular special needs and adoption issues. Nothing we can’t handle. But that was exactly the point. We might have originally said we couldn’t handle a child with attachment issues or a potential learning disability. But we learned, when faced with such issues in a child we already loved, that we could handle them. We could stretch our comfort level and educate ourselves and help our child through this. When we came to this realization, we decided to adopt a special needs child. And that’s how we ended up in northern China, almost exactly a year ago, adopting a 23-month-old boy who had been born with a cleft lip.

For some reason, some of the groups I belong to on the internet are burning up with people who want us all to know that their precious child(ren), adopted through the China Waiting Child Program, don’t have any special needs. One woman in particular is slamming my agency over and over about their use of the term “special needs” to refer to the children who are waiting for adoption. According to this woman, her children’s special needs disappeared as soon as the children had their repair surgeries.

I think some people are confusing the term “Special needs” with something else. For some reason, the term seems to conjures up mental images of people with multiple severe physical disabilities, as well as moderate to severe mental retardation. People like my brother, in fact. And people all over the internet are rushing to step up and claim that their child does not have such needs, and that the adoption agencies and people who use the term “special needs” are implying that their child is severely disabled. Like my brother.

Personally, I think this is a gross misunderstanding of the term. The term “special needs” is not pejorative. It’s really nothing more than a simple description. My oldest daughter had special needs when she was younger because she had a learning difference that threatened to become a learning disability. With prompt identification and specific, targeted help, she overcame those differences and is now a champion reader. Does she have special needs now? No, but if any special needs come up in the future, I won’t be shy about addressing them. My son has special needs related to his cleft. He needs targeted dental care, yearly checks by an audiologist and surgeon, and special attention to his speech. Are these needs that will land him on a special school bus or require special accommodation by the school? No, probably not. But they’re still special needs that we have to be aware of, and we have to pay a little extra attention in the future to determine if he has any kind of craniofacial syndrome.

I think I could forgive people who don’t seem to understand that “special needs” is not a value-laden term. But what I am finding unforgivable is the attitude so many people seem to have, when they rush to deny that their precious child has any special needs. They seem to be trying to distance themselves from people like my brother. I could sort of understand this attitude in people who have not accepted the unknowns of adoption as a way to build their families. I could almost understand this attitude in people who have adopted or intend to adopt only an infant as young as possible from the non-special needs stream. But from people who have adopted, or intend to adopt, from the Waiting Child Program – I find this attitude infuriating and deeply saddening all at once. Argue what you want about terminology. But never, never act as if my brother is someone to be ashamed of, or distanced from.

My brother has plenty to offer my family, and the world. To argue that your child does not have special needs because you don’t want them lumped in with people like my brother is shameful and ignorant. Not to mention short-sighted, because at any time your child could develop special needs and require extra help. What will you do then? Disown your child because you’ve already decided you can’t handle anyone with special needs? Too bad for you, because you would miss out on some special moments like this:

Elvis Karaoke by Uncle Elvis

And trust me, there is no family that can’t stand to be enriched by a little Elvis.

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About Sue

This blog chronicles the adventures of Sue and Steve as they travel internationally with their three children.
This entry was posted in Adoption, Family ties and tagged , , . Bookmark the permalink.

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