Tuesday, September 1, 2015

My Special Needs Kids Trumps Your Special Needs Kid

This morning, I got slammed with a migraine so, as it wore off and I was coming back to the land of the living, I did what all good folks do: I checked Facebook on my phone.  An article that a friend commented on popped up and I decided to read it: 12 Reasons Why Peanut Free Schools Are Not Okay.  The article is okay; I've read better written things that don't seem to repeat the same idea over and over again, and I've read articles on the flip side.  But the comments on Facebook.... Now those were something to read.

"Entitled monster mommies who think little kids gasping for their last breath is LESS important than their little special snowflakes munching on a their FAVE PB&J getting peanut butter on their sleeve-- because let's face it, kids are messy little monsters-- and then brushing it on their severely allergic classmate's desk."

"There are other things in this world to eat besides nuts. Sheesh. Send them with cold hot dogs."

"It doesn't cost that much more to send them with a cheese sandwich. Or buy deli meat. Or buy ramen noodles for pennies & stick it in a little thermos."

"Its like peanut butter is the ONLY option for a kids lunch at school?? Oh sorry your kid died, mine HAD to have the only lunch I am wiling to make since I don't care enough to make anything else."

"That is so incredibly callous for her not to care about another child's safety.  "

"These selfish bitches need to grow up and look at alternatives."

The person who commented with this dissent:
"My kid's schools aren't peanut free, and I'm glad they aren't. I understand there are allergies, but taking healthy food away from the majority of kids instead of just taking precautions and paying attention isn't the answer."
Was told that "peanuts aren't healthy". "it's...cancer causing", "you really need to think about this", and "So you're perfectly fine killing my kid just so yours can have a peanut butter sandwich? Wow. What a great person you are!"
Another person who wrote "My son's health is just as important as your kid's." was met with "Your picky kid can eat when he gets home." and "teach your child compassion".

Peanut allergies are deadly and real; we have friends with them, and they are no joke.  Even a pan that was touched with peanut oil years ago and washed off could cause a reaction.  It's terrifying.  And I cannot even fathom being the parent of a child with that type of reaction to something.

I have allergies to opiates, latex, and penicillin; none of them will kill me, thankfully, but they will make my life miserable for a while.  When we were first trying to find out how best to help Bobby and we realized the role that diet played in his behaviors, we cut out dairy, wheat, phenalic foods, and foods with dyes.  Talk about life being hard.  Holy goodness.  It was rough.  But getting those foods wouldn't kill him.  We're now at the point where we know his only allergies tend to be artificial food dyes (try buying mainstream food with that fun one) and a sensitivity certain phenol containing foods.  We have to be careful but a slip up means that we'll have a week or two of horrendous behavior, not a run in with an epi pen or, worse, a trip to an ER that could be fatal.

But back to schools banning peanuts because of deadly allergies...  It seems to become a "my kid's life is more important than your kid's life".   With children battling a number of neurological issues that are "hidden", like ASD, SPD, and others, you have children who, while not allergic, have some serious food issues.  Johnny's mom says no peanuts because her kid is allergic; Jimmy's mom says he must have peanut butter because he won't eat anything else and will starve.  (Before someone flames me with "kids will eat when they are hungry enough", let me assure you that children with ASD and SPD are really exceptions to that rule.  They will go days and NOT eat because, neurologically, they can't.  Unless you have that type of special need in your life, then you have zero idea of how food can drastically impact a child with a spectrum disorder.)  So, who wins?  Clearly, we don't want Johnny to die; of course, we don't want Jimmy to starve either.  In almost every case I've ever heard of, the peanut allergy "special need" trumps the other needs.

So, let's expand it.  A friend of mine has an ASD child who struggles with allergies: deadly ones to dairy and fish, and not deadly but problematic to wheat and rice.  Should the school ban milk and fish?  That's only fair, right?  Little Tommy* (*not the child's name) could accidentally come into contact with milk or fish and DIE.  If we are banning nuts for Johnny, then we have to ban dairy and fish.  It's only fair; otherwise, you're saying that one child's deadly allergy trumps the mainstream's right/desire to eat what they want, but that another child's life isn't as important.

I commented this scenario on the FB post and was told that milk isn't "easily transferred" and that schools have to provide milk, so too bad for my friend and her child.  This, basically, was what she was told by the school: her child should make sure to practice good hand washing and avoid all dairy and fish.

According to the State School Heath Policy Database, a lot of what is allowed varies based on state.  That being said, "8 ounces of fluid milk must be offered with breakfast and lunch".  However, federal law stipulates that milk must be skim or 1%, which flies in the face of research that states only obese children over age 2 be offered lower fat cow's milk and that whole milk (and it's fat) are better for developing brains and bodies.   Do kids actually need to drink cow's milk?  "No, of course they don't," said Amy Lanou, a professor of nutrition at the University of North Carolina at Asheville. Most people in the world do not drink milk after they are weaned from breast milk, and yet still get adequate nutrition, she added.   What kids should and shouldn't have, milk included, is up for debate all over the U.S.  Looking at a school lunch law site, the following was listed:
"In a few highly publicized cases, parents and educators asked the question whether schools have the right to limit what students may bring to school to eat. On one hand, some argue that certain rules may interfere with their constitutional rights to raise their children according to their own values. On the other hand, some believe that states have an interest in keeping kids safe and healthy through publicly-funded lunch programs. Below are just some of the cases making national news headlines: In Chicago, a local school banned brownbag lunches from being served at all
A North Carolina student had her turkey sandwich taken away by a state inspector and was served cafeteria chicken nuggets in its place
National effort to ban ‘pink slime’ beef filler from USDA lunches
National Physicians Group petitioning to ban milk from school lunches
School districts across the country banning sugary drinks, like sodas and juices from menus
California and Massachusetts have considered banning chocolate and flavored milk because of its high sugar content."

FARE, an advocacy group for food allergies, links to the CDCs recommendations for schools and allergies.  Legally, "Food allergies may constitute a disability...Schools cannot exclude a child with food allergies."  "Federal discrimination law -- i.e., the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, and the Air Carrier Access Act -- require covered programs to not discriminate against otherwise qualified individuals with disabilities on the basis of their disability. More importantly for the purposes of peanut cases, these laws require reasonable accommodation. Reasonable accommodations are those that are not unduly burdensome either administratively or financially...Under the current interpretations of federal law, including the Supreme Court's decision in Abbott v. Bragdon, which applies the definition of disability broadly to cover a woman who was HIV positive but asymptomatic (see Bragdon v. Abbott -- Supreme Court Decision Addresses Application of Americans with Disabilities Act to Individuals with HIV, Bragdon -- The Unanswered Questions, and 118 S.Ct. 1206 (1998)), the courts are likely to find that at least those individuals with severe reactions to peanuts are substantially limited in the major life activity of breathing. It is less clear whether individuals with moderate reactions would be covered. The courts have distinguished between degrees of limitation in cases involving depression, mobility, and other impairments, so it is not impossible to imagine a program challenging the coverage of discrimination law to at least some individuals, although to do so might not be wise from a public relations perspective."  The CDC documents state that schools should avoid identified allergens and make reasonable food accommodations.  One of FARE's fact sheets states: "Children with food allergies need your support to ensure their safety and inclusion. From classroom parties, to school family nights, to after-school fundraisers, keep in mind that all students in the community should be able to participate safely."  But allergists don't recommend banning peanuts; since these are the doctors who have the most information on the topic, should their opinions weigh more heavily?

So... what to do?  If we ban peanuts, do we have to ban every single allergen?  Will we stop kids from eating things in their own homes, for fear they could make a classmate sick later at school?  If Bobby was in a traditional school setting, should we fight to make sure there is no opportunity for him to come into contact with food dye?  One school says yes...  In Canada, a mother claimed a human rights violation and sued the school on behalf of her daughter who is allergic to dairy and eggs.  The school agreed to stop those items from being in the child's class and asking the rest of the school to accommodate as well.  If you read some of the comments on this post, you can see parents really slamming the mother.  Would we do this if the allergy were peanuts?

No one wants to be the mom who misses an ingredient and puts her kid at risk, or (I hope) the parents who feel they have no choice but to protest a child with a peanut allergy (I honestly cant imagine being one of those folks...wow).  So, what do we do?  How far do we go?  Do we stop banning?  Do we ban everything?  Do we send kids back home for lunch?

I honestly don't have an answer.  Bobby has a limited diet and peanut butter plays role in one of the few things he will eat.  (Maya and Michael love PB as well).  That being said, knowing how food plays a role in Bs life, I wouldn't knowingly expose another child to a food that could harm or kill them.  I don't need a ban for that; the world doesn't come with bans.  It doesn't come with common sense either (like, don't give a kid who isn't yours food if you don't know them and know what is okay/what isn't okay).  Part of our job as parents is to teach our kids what is okay and what isn't.  But even that doesn't alleviate the issue of, say, food residue on a table.  Sitting kids with allergies apart can limit that problem (and teach compassion, as friends will choose to not eat offending foods to be with their buddies) but it doesn't stop airborne issues.  So, again, what do we do?  What is the right answer?

Does someone else's special needs child trump another's?


1 comment:

Amelia said...

Very interesting subject! G can't have dairy, but just gets rashy if she eats it, her surroundings don't cause her issues. As a mom who has to ask the same question 5 different ways to get the honest answer at every restaurant we've ever eaten at, I can't imagine the terror other moms must feel putting their kid's life in the hands of someone who doesn't take it seriously.