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.


  1. You cannot have it both ways, either accept that in order to receive the accommodations required to keep students with allergies safe you have to be considered disabled or don't ask for these a commodities. People with all kinds of challenges are the person first and the disability second, not only you entitled peanut and nut free allergy ones.

  2. It's interesting that you posted this. We're just now entering "the machine," with the PSAT, ACT, SAT, AP exams and the like.

    I'm already stressed out about obtaining accommodations in the *testing* environment. The College Board is apparently a law unto itself. What if they refuse her need to be in a food-free room?? What if they won't allow her to keep her epinephrine with her? I hardly think it is fair to HER to make her terrified during an exam with such importance. She certainly will be if she can smell her allergen in the room, and given her reaction history, that's not exactly an unreasonable fear on her part. Given that she's a kid with likely NMS potential, this is no small set of considerations.

    On the other hand, I find myself thinking... yes, but SURELY it's not that big a deal...

    then again, it's always been a big enough deal that the public school certainly takes the risk VERY seriously during mandatory NCLB testing, where the outcome matters to THEM rather than to her. It's certainly an important part of her 504 plan.

    FWIW, FAB-- disability liaisons on college campuses are often light years ahead of those in K-12 in terms of knowing the law and having a much more matter-of-fact approach to accommodations. I agree, though, that not checking that box is probably the right thing to do. Time to cross that bridge later.

    On the other hand, might it even be a benefit? After all, there is a push toward both diversity and inclusion (on paper at any rate), and it is certainly true that it is virtually *free* to accommodate FA students on college campuses. That may, in some respects, make our kids more... er... desirable than those with profound physical disabilities.

    Is she "disabled"? Well, my friends with a trisomy child certainly think so, having seen our lives up close and personal for a decade. When our infant daughter was diagnosed (the hard way-- via life-threatening anaphylaxis) the only people who understood what we'd just been handed-- and CONSOLED US-- were colleagues who had disabled children. One couple with a profoundly autistic son and another couple who had a son with Tourette's. They both thought it worthy of a welcome to Holland, as it were. So I don't really doubt that it's a "valid" disability.

    I get the sense that the poster above has not lived with food allergies the way that we have. This is a lot more than lactose intolerance we're talking about, and I frankly WISH that it were some imagined problem that I could set aside when we don't want "special attention." It effects even those things that it doesn't *seem* like it should impact. It's hidden and most people not living this way just cannot understand, even assuming that they wanted to. Most have their minds made up that we're attention-seeking helicopter parents anyway. THAT is what FAB's blog entry was about, when you get right down to it; assessing the likely response to the revelation on the part of an unknown person reading it.

  3. I have twin boys that are 5. One is considered special needs. He did not talk till age 3 and is still developmentally behind and is probably somewhere on the spectrum. My other son has a severe peanut allergy. I have no problem saying I have two special needs children. I think anything that is not the norm that requires lots of extra works counts to say "Special needs" because it is special. I don't say "disabled" though. But, yes, I often find myself just as frustrated or troubled over my peanut allergic son as my spectrum son. So that to me says a lot about how much having a food allergic kid makes you work over what other parents do.

  4. Thank you for sharing your story. It was shocking to see the word "disabled" and trying to associate it with a child that is 99.9% "normal" but I know in the play of english words severe food allergies is a "special need". On seeing this word, the air in my lungs was sucked out and I tried to see my childs whole life in that split second...always being "different". I too agree that the allergies have brought out the best in us as a family and all of us have learned so much from it despite the daily grind and anxieties it has brought as well. What parent of any child with a "different" need wouldn't want to have a day with routine stresses like "what will we wear today? or hope we make car pool on time? or what time will I have to pick them up from their play date?" Life is full of challenges and despite what we put on paper and what labels we use, it is just that - a word on a paper - and it by no means defines who we are or what our accomplishments and potentials may be.


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