Some people have a hard time understand why it would be fair to ask them not to eat peanuts on a plane. For me, its simple. To save someones life. I think that any human, who fully understood the danger of the situation, would willingly give up their salty snack if it was as significant as saving someones life. The problem may just be that we don't aways understand how severe it can be, and I think, sadly, for many its about believing how severe it can be. Most of us, as friends and family members, work very hard to keep our family healthy and as close to symptom free as we can. When an uneducated airplane passenger, or classmate, or even teacher, sees how healthy our kids can be, they may not realize whats involved. Sure, Gabriel has never had an anaphylactic reaction at school, and I think thats great! I give him 5 medicines before we even step out the door every day to keep him under control. I have to shop and cook for special meals, and avoid many plants, animals, and foods. Please understand, when someone with allergies looks healthy, that means we're doing a good job! That does NOT mean that they are healed, or free of their allergies!
What can be even scarier with allergies is that your body can tolerate something, or not react to it, and then, wallah, one day you have anaphylaxis. It can happen. A friend of mine, recently suffered from mild face swelling. The swelling was followed my uncontrollable facial and body twitching and spasming. She started to feel numb, and her symptoms grew as she was escort to the hospital. The diagnosis? A severe allergic reaction from something that had never ever bothered her before.
Gabriel's doctors have given us tools to help prevent these dangerous situations. They've done blood and skin tests to predict severe life threatening reactions. Yes, we've been so lucky that Gabriel hasn't experienced this, but it is still a very dangerous threat that we must be prepared for.
I like to think that maybe the staff at Gabriel's school see's how vibrant he is on most days. Maybe they observe a 'healthy' little boy, and assume that I'm the overprotective paranoid Mom. Maybe they don't remember?
I brought Gabriel to school today for the Halloween party. He was so excited. We brought apple cupcakes, with plastic bugs sitting on top. As I was dropping him off I saw a platter of whitebread, crust removed, with a layer of peanut butter between each piece. Wait, peanut butter? A whole platter? IN Gabriel's classroom? It took a minute for me to wrap my mind around this. I was half in disbelief, and half hoping it wasn't true. We left, and as always, my sister was to the rescue. I brought Gabriel to her house for the day.
I've always said great thing about Gabriels preschool. His teachers love him, and he loves them. The school called me an hour later. I assumed this might be an "oops were so sorry!" So I answered. They were curious if Gabriel was coming back this afternoon. I said no. They began to explain how they didn't plan on serving the peanut butter to everyone, and how, maybe, they would have saved it for later. I realized then, that Gabriels school has no idea how dangerous this is for him. Again, I explained that the smell can make him sick. Again, I explained that this threatens Gabriels life. Again, I spelled out the horrible details I usually avoid saying outloud. They let me know that it wouldn't be fair to ask the others not to bring peanut butter in their lunch. I explained it until I was blue in the face, and thought maybe a using the law in my defense would help. I explained that Gabriel has a disability. I requested that they accommodate his disability, and make the school a safe place for him. Again, they didn't believe that it would be fair. I talked and explained and talked and explained. I hung up the phone and realized that even people who love Gabriel, even educated teachers, people everywhere, don't understand. When someone doesn't understand how severe allergies like these can be, they cannot help to prevent them, or treat them when necessary. I was reminded today that we will come across many people who will never understand, and who will always put Gabriel in danger. Cases like these care called hidden disabilities. The following is an explanation of what hidden disabilities are and how the law protects those with them.
WHAT ARE HIDDEN DISABILITIES?
“Hidden disabilities are physical or mental impairments that are not readily apparent to others. They include such conditions and diseases as specific learning disabilities, diabetes, epilepsy, and allergy. A disability such as a limp, paralysis, total blindness or deafness is usually obvious to others. But hidden disabilities such as low vision, poor hearing, heart disease, or chronic illness may not be obvious. A chronic illness involves a recurring and long-term disability such as diabetes, heart disease, kidney and liver disease, high blood pressure, or ulcers."
(“The Civil Rights of Students with Hidden Disabilities Under Section 504 of the Rehabilitation Act of 19743.”)
HOW DOES SECTION 504 HELP A CHILD WITH SEVERE FOOD ALLERGIES?
The legislators who wrote Section 504 purposely used broad and relatively non- prescriptive language so that the law would encompass a wide range of disabilities. Schools must give children protected under Section 504 an “individualized educational program” with “accommodations.” This program usually takes the form of a 504 Plan. The 504 Plan lists and explains the formal accommodations and modifications that will be made to the public school environment to ensure the least restrictive learning environment (LRE). The LRE must provide equal opportunities for children protected under Section 504 to the maximum extent possible as their non-disabled peers. A 504 Plan for a children with food allergy should have many components to address important food allergy issues so affected children have the best possible chance of staying safe.
(e.g., Amy is contact allergic to peanuts, one accommodation to the learning environment might be: All children in Amy’s class will wipe their hands with wipes upon entering the classroom.)**
Gabriel cried when we left his Halloween party, and I cried too. What if I didn't notice the tray? What if I didn't discover this understanding, what could have happened in the next few months? How many times was Gabriel in danger, because they didn't understand? No matter how clear, and how often i say "No, he can not be in the same room as peanut products. No, it is life threatening." I've come to notice that Americans are disbelievers. What we don't see, we imagine doesn't exist. All we can do is continue to educate the world about allergies and asthma. For me, I learned that the world doesn't understand as much as i wished they do, and homeschooling is in out near future. If you or someone you know if having difficulty with public schools, and accommodations contact the Department of Education Civil Rights office. http://www2.ed.gov/about/offices/list/ocr/index.html
** from http://www.foodallergyadvocate.com/Section504IDEA.htm
It makes me cry, too. But we have to be positive and to be thankful for what a blessing he is. I didn't tell you that he spent all day singing and dancing today... literally singing ALL. Day. Loooonnng. We are clearly more torn up about this than he is, as he goes about his day with such happiness.
ReplyDeleteAnd, since I was the ashamed, unprepared Auntie with nothing handy to feed him for dinner, he ate half a bag of Brussel Sprouts while we ate dinner (waiting for you, Mommy, to come pick him up and feed him his real dinner at home); beaming and excited about how yummy they were.
You are raising a brilliant, HAPPY boy.
Its so shocking to see that as notorious of an allergy peanuts are to people they still allow them at some schools. I am actually taking a class regarding hospitality an disabilities an just learned about several laws in place mostly in the workplace though but should be relevant in schools as well. They mention making special accomodations for people with special needs or disabilities as long they are not causing a burden on everyone else. In gabriels case, I hardly think these kids would care if peanut products weren't allowed if they were just banned from the beginning in schools period. Its a very common allergy for many young kids, an I know here in the bay area they don't allow it unless its in individual lunches.
ReplyDeleteWhat happened to just plain jelly or cream cheese and jelly?
ReplyDeleteWe can't say certain things because someone in society has determined it could hurt someone's feelings...why doesn't not serving certain foods work the same way?
come'on world...wake -up!