Special Needs Labels

I don't often say Mitchell is or has "special needs". It doesn't flow naturally from my tongue. A doctor once said, "He has special health needs" and I liked that much better. But being cynical, Mitchell doesn't have special needs, he requires TOTAL or COMPLETE needs to be taken care of! So you can see I'm often stumped at how to describe my son.

A mom who writes about her son's "special powers" and family experiences relating to his Cerebral Palsy echos this dilemma. She blogged:

“Special needs” just doesn’t sound cool, although out of all the terms, I tend to use it a lot because it’s the most recognized term. “Differently-abled” is cooler but harder to explain and I don’t always want to explain. “Disabled” emphasizes negativity, and “handicapped” just seems outdated to me.

I know, I know: Why are labels necessary? Sometimes, they just are. I don’t always want to say “Max has cerebral palsy”—vague terminology comes in handy for forms, special accommodations at places, nosy people.

I know it doesn't work for her, but I wind up using "disabled" the most when describing Mitchell. His inabilities are major. In specialist's terms, he's severely impaired. Saying he's disabled conveys he is not able. I might go on to say, he doesn't walk or talk and uses a wheelchair. Disabled also better focuses on his physical limitations, rather than his behavioral. Generally he's a pretty content little guy.

Speaking of Mitchell's behavior and personality, that's tough to describe too. It's hard to describe characteristics too specifically when there are no verbal and few movement cues as to who he is, but I've nailed that one when I say Mitchell is sweet, lovable and has a gentle spirit. I know those things are true!

I've found I'm most adamant when it comes to talking about visual impairment. Notice I did not say "blind". I have learned there are so many degrees of impairment, it's often incorrect to call someone fully blind. Mitchell has some peripheral vision although he can't process what he sees very well so I say he is visually impaired. I never shortcut when relating he receives vision therapy from the Cincinnati Association for the Blind and Visually Impaired.

I admit some of this is ego. It is very hard for me to accept or internalize my son being blind. I can't explain it. I've always been funny about sight though, very thankful for not needing glasses myself. I've boasted the only thing perfect about me physically is my eyesight!

I am still working through letting go of comments strangers make about Mitchell being tired when his eyes are half-mast, usually replying about his remarkably long and beautiful eyelashes. But it always seems to get a rise in me. I want to quip, "He can't see." That would only make them feel bad so I keep mum. Again, I'm working on it.

So if we must label, what works for me is to say Mitchell is disabled and visually impaired. But know other families likely feel differently so in my opinion it doesn't hurt to ask their preference.