Thursday, March 1, 2012

Are Our Food-Allergic Children Disabled?

My son and I had a rare moment of togetherness this week: filling out the forms for the College Boards. This is a joint project because, while it requires my credit card to pay the fees, there are a ton of profile questions they ask about college plans, priorities, career goals, etc.

It was the question about special needs/challenges/disabilities that stopped us cold:
Do you have a disability that requires special provisions from the educational institution? Mark the one choice that most closely describes your situation. Providing this information is entirely voluntary.
Huh. There was an option provided for "Other." Should we check it?

My son squirmed on the chair next to me, clearly uncomfortable. "Just let it go, Mom. Please just don't get into it."

Even at 17, my son is very sensitive to the idea of being different from others and asking for what he needs. But wouldn't it be a good idea to just tell all these schools up front that this student would have special requirements?

A second later, the other side of that coin hit me. Would the schools actually be prejudiced against him because of his special needs? Or, worse yet, would they see the words "food allergy" and assume the host of negative connotations that often go with it in many people's minds? Overprotected. Sheltered. Fussy. Controlling. Faking. Was the line about disclosure being "entirely voluntary" a warning?

We left it blank. There's just nothing positive that could come out of a label without further discussion, and the time for that discussion was after he had narrowed down his college list.

My son will continue to face this question on all of his applications, though. Should he try to explain the force food allergies have played in his life, perhaps even write it into his essay? Or are food allergies just a quirk in physiology, like my friend who had one leg shorter than the other and had to learn to compensate when she danced?

I have gone back and forth with this over the years. Shortly after a reaction, it can feel like the world is crashing down on us and food allergies are unbearable. Most of the time, though, they're a nuisance that we've learned to live with. The word "disabled" doesn't feel right to me because my son is quite able 99.99% of the time. However, in a world where food is social currency, he will not be as able. It's the mental and social toll that make him different, regardless of how hard we tried over the years for inclusion. He will simply never be able to eat with other people without planning in advance, and when he does eat, he will always have to consider the possibility of a reaction.

A few weeks back, I had a knock on my door. It was the wife of a local political candidate who wondered if I might be willing to put a sign in my lawn in support of her husband. I explained that I really needed to know a little more about his views before I could endorse him.

During her overview, she mentioned that a lot of the work he has been doing has been focused on rights for disabled children. (They have a daughter with autism.) I said "Wow, that's great! We have a child with a disability too, so I know how much that type of advocacy is needed."

"Really," she said. "What type of disability?"

"He has severe food allergies," I said.

She made an exclamation of...disgust? surprise? disbelieve? "God, how I WISH that was all we had to deal with!" she exclaimed.

O.k. I get it. Not visible. Only affecting us that pesky 0.01% of the time. Not the same as having a child who will never be able to marry or be on their own in the world without significant assistance. But also not nothing.

My son and I continued on with the College Board questions until we got to the page where they ask you to rank, in order, your criteria for college selection.

"I think we should put a #1 next to 'other'," I said to my son. "Food allergies are really the most important consideration."

"Oh, come on Mom!" he said. "Food allergies are maybe fourth on the list for me. What kind of a school it is and where it is and what kind of programs they have are all most important to me than stupid food allergies. Wherever I go, I know I'll be able to figure out a way to deal with it."

And you know what? He will. It may be easier at some schools, but it will be manageable at all, even if it means eating eggs cooked in an electric skillet every day.

Disabled or not, I know that food allergies have actually enabled him to deal with tough, life-threatening challenges. And isn't that ability to cope with the worst life can throw at us what we want for all our children?

I can't go so far as to say I'm thankful for food allergies. But I do think there's more able than dis overall.