Should Food Allergies Qualify as Special Ed? One Parent's Story...

Almost a year ago we wrote about the good times we had with the NYC Department of Education trying to get a school for our daughter.  Truth be told, they did us the biggest favor in the world, as mini is at a fabulous school: she's safe, healthy and thriving.

A public service message to kids with medical needs who can't attend school without help: if you're not behind academically there's no school for you!

But we couldn't let it go.  See, NYC's ignorant and dismissive attitude towards food allergies is going to get some poor kid killed one day.  It is a known fact that the majority of children with food allergies WILL have a reaction at school.  Furthermore studies have shown that the single biggest factor in determining whether or not a child's reaction was fatal was access to an epipen and time to administering.  Therefore it does not take a rocket scientist to figure out that one must keep an epipen near a child with food allergies at all times, just in case.  It's an easy thing to do to prevent death.  After all, we already incorporate other things that may once have been perceived as "inconveniences" into our daily routines should the worst happen: sprinklers, seat belts, choking signs, fire extinguishers.  Have you ever seen a school that said "nah, we don't need the free sprinklers you're handing us, we've never had a fire.  You may have expertise in fire prevention but we've been preventing them for years and know we won't have any."

We didn't think so.

So why is it so hard for city officials and school administrators to wrap their heads around the simple fact that 5 minutes of training for all their staff plus easy access to epipens will bring peace of mind and evade a serious tragedy?  Seriously, you can watch one YouTube video and be trained, it's that simple.  And you can't even hurt someone by accidentally using the epipen.  And if you're still not convinced, think of it as a public health necessity: almost half of food allergic reactions at schools occur with children who were never diagnosed with any kind of allergy.

New York may not take it seriously but our federal government is.  There is a bill being proposed that would require schools to carry epinephrine, not just as prescriptions for individual students, but several injections of epinephrine not locked up, not in the nurse's office, easily accessible just in case.

And this is all we asked for.  We did not ask for a nut free school.  We did not ask for a curriculum change.  We did not ask the school to spend any money.  We simply asked the school to take a little time and meet with us to develop a plan, train its teachers, and ensure an epipen is available in any room our child would be in.

Clearly this was too much to ask.  So we asked for an IEP.  504 plans are great but they assume you had a say in what school you're at and therefore don't give you the right to move schools.  Kids with special needs should have the ability to say "hey, this school doesn't meet my needs, but this school does, so please move me."  Other kids have that right.  Kids with mild speech delays and an IEP have the right to switch schools.  Children with wheelchairs, hearing aids, etc. may switch schools if one is better suited to their needs.

But food allergies, while classified as a disability according to the ADA, falls under that vague non-specific area that until now has been interpreted as falling under 504 for most cases.  Except most cases assume the parents actually had a say in the school they choose to attend.  Studies in Massachussetts documented families moving to different school districts simply because they felt the new school would better accommodate their child's food allergies.  This happens all the time.

But due to a loophole mini didn't have that right.  She was "waitlisted out" of her zoned school, sent somewhere else, and her parents weren't even allowed to tour the school before registering.  So when we found the administration hostile to the accommodations we requested (the phrases "you're crazy," "I don't have time for this" and "we have children with real medical issues" were carelessly tossed about by the principal), we concluded that a 504 would simply not be enough.  According to many leading food allergy advocates:

No matter what the content of your school's plan for your child's safety, the biggest factor in your child's safety is the quality of communication and trust between parents and school staff.[1]

Thus, we naively assumed that when we brought all of the above information to the attention of the special ed committee, they would grant her an IEP so that she may be placed in a school better suited to her needs (in this case, one where the principal actually took the condition seriously).

Readers will know the result.  Six months after applying, we finally had a meeting, and were denied an IEP on the grounds that mini was too smart.  The conclusion: the medical condition was not affecting her grades, therefore she did not qualify for assistance.

You can imagine our horror.  Here we were telling administrators that without their intervention it was not safe for our daughter to set foot in a school for even half a day, and 4 months had gone by with her not being able to attend school the whole time, yet this was not enough to show "affect on learning".  What, we wondered, did children with other disabilities do if they were smart and resourceful? Would a child in a wheelchair be denied ramps if their grades were good?  Would a deaf child be denied an interpreter necessary to do well in schools if they were developmentally appropriate in all other areas? Would a diabetic be denied an IEP and transfer to a school with a full time nurse if they were academically at par with their peers?

Most of all, what really kept us up at night was "What if we weren't fortunate to have the resources we have?"  What would happen if another child found themselves in mini's shoes but the family could not afford an independent school as an alternative?  The parents would have to choose between home-schooling their child (which some parents of children with multiple food allergies are known to do), or risking their kids' lives every day.  We've heard stories of mothers going to the cafeteria every day at lunch to ensure their kids' safety, but what if you have to work?

Clearly, there were many, many kids risking their lives in the NYC school system every day and it was only a matter a time before tragedy struck.

So we sued.

If we didn't say anything, who would?

And we lost.  Friday we were informed that the judge upheld the claim that our child was not eligible for an IEP, solely on the grounds that she was not academically behind.  There was no dispute she had special medical needs, and had we kept her out of school long enough for her to fall behind, they'd grant it. 

So, for those of you out there with babies who have any kind of special need, if you're wondering how you will go about getting special accommodations for your child, fret no more! All you have to do is ensure your child is not performing at grade level and you can ensure they will get what they need!  Do not read to them! Do not let them play with other children! Do not play with shapes, colors, blocks.  Think of all the money you'll save on mommy and me classes!!  Think of all the time you'll save thinking up activities since you can just plop them in front of the TV all day!

Some will tell you to run in all kinds of circles, get a special education attorney, etc. to advocate for your child.  Learn from us! Save yourself the money.  As the judge's recent decision states: if your child performs below grade level for any of the academic tests, they will qualify for any service they need!  

So there you go, peeps.  Special education has been distilled into one, easy uncomplicated answer.  Prevention is a waste of society's time, it's all about being remedial.  You heard it here first.

Meanwhile, we'll be looking for ways to lobby for better laws.  We probably should give up saying "we fought the good fight" but we can't shake the nagging feeling of knowing something's wrong and that someone will get hurt if nothing is done.  

Other states have much better policies in place than New York.  It's time the policies were updated to focus on their original intent, which we presume is to actually educate our kids. 

No idea where to begin here.  Suggestions welcome.

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[1]              Ellie Goldberg, food allergy advocate.  Also see Take Steps to Ensure Your Child has a Safe School Year, available at, http://www.kidswithfoodallergies.org/resourcespre.php?id=137.  and Communication Crucial to Protecting Food-Allergic Children at School, available at, http://www.nationaljewish.org/about/mediacenter/pressreleases/2010/food-allergic-children-school.aspx, quoting, Michelle Freas, coordinator of medical and health services at Kunsberg School on the campus of National Jewish Health (“Most parents do an excellent job during the summer of isolating their children from foods they’re allergic to, but when they go back-to-school they lose control of what their kids are exposed to.  The key to protecting food-allergic kids at school is communication with the school.”). 

The Princess and The Peanut

I was lucky enough to snag* an advance copy of a new book called The Princess and the Peanut, written by Sue Ganz-Schmitt. 

This is a new book that covers a sorely needed gap, food allergy education for children.  And it's not just for the children with the allergies.  In fact, after reading this, I'd say it's really best for kids who have a friend or classmate with food allergies.

See, some crazy people have the notion that if you educate kids on food allergies they'll be less likely to - you know - protest and such when they have to give up things.  Crazy, I know.  But I just happen to buy into that kind of crazy.

So I sat down with my 6-year old girl who is also allergic to sesame, eggs, tree nuts, and (wouldn't you know it) peanuts, and we both dived into our first book review together.  Truth be told we were both skeptical: she, because she feared it might be boring or scary, and I because I was terrified it'd be cheesy.

It was neither scary nor cheesy.

The Princess and the Peanut is a cute, modern take on an old classic, however in this one, a poor unsuspecting princess who doesn't even know she has food allergies is in for a surprise when the Queen runs out of peas and uses a peanut for the royal princess test instead.  After all, what could happen?  What follows is a smart, matter-of-fact and fun story showing what to do should you have or encounter anyone with an allergic reaction. 

Beyond the obvious, there was a lot to like.  Things the mini liked:

It was silly.  The book has a surprisingly humorous tone to it, which she loved.  She particularly enjoyed it when the royal princess had a skin test to various things.  While "peanuts" came out positive, we were both pleased to find out that neither "three blind mice" nor "dragons" induced a reaction.   And any book with a court jester is automatically awesome to her.

She could relate.  She saw the picture of the princess having a reaction and knew what it was.  She saw the royal epinephrine, the skin testing, the abandonment of products that may contain peanuts, and she knew exactly what that felt like.

What did I like? Well any parent knows if you find an educational book your kid likes that's reason enough to like it! But beyond that, what made me happy was that it was accurate.  My biggest fear was that it would perpetuate some kind of misinformation, like if the princess got a shot of epinephrine but then stayed home instead of calling 911.  Fortunately, our fears were put to rest as the book elegantly weaves in key topics of treatment, diagnosis, and the importance of avoiding the offending food.

Wait, there's a book that shows a princess looking like this?

I thought it was surprisingly engaging.  I particularly liked the pages of illustrations where mini had to come up with the story herself.  I like books that force my child to think.  I like that it presented information without being preachy or boring.  

Another good thing? The princess was still cool.   There was no "poor me".  No one was pitying her or looking down on her.  She was still a strong, smart, desirable princess.  However, people who loved her like the prince had to do things a little differently if they wanted to be around her.  And it was no big deal.  Which is exactly as it should be. 

My favorite part? When we put the book down and I asked my daughter if she liked it and she had a huge grin on her face as she said "I LOVED IT!"  That princess was cool, and she could relate.

Overall, I love the lesson that this teaches.  I love that it teaches kids actual facts that are medically accurate.  And while it did not end as I had hoped (we don't want to spoil it but here's a clue: they went traditional vs. modern), I let that one slide because the story was so cute overall. 

So we'll be going on Amazon and pre-ordering a copy for her classmates tomorrow, along with Ganz-Schmitt's first book, Even Superheroes Get Diabetes. 

You can do the same, or you can wait until it'll be sold in bookstores next month.  If you simply can't wait, check out the trailer, the music alone will put you in a good mood.   Meanwhile we can't wait to see what topic she tackles next.

*When we say "snag", by "snag" we mean they sent us one. Thanks peeps!

And her grade is....

This past Wednesday, as her first decision as chancellor, Cathie Black decided NOT to close NYC public schools due to snow. She consulted with the mayor, the sanitation department, and (we suspect) the mayor's speechwriter's as well. The sound byte was intact. Hail NYC public schools! Hail the fact that they have closed only five times since 1978!!!

Um, excuse me? Is this supposed to be some sort of accomplishment? 9 inches of snow in Manhattan - more in the boroughs - a warning from the city and sanitation department not to travel if not necessary - and school is...open? Not even delayed? So parents have to conduct the usual morning rush in a pedestrian city and walk quickly through icy streets so they can still make it by 8:15? Perhaps she has confused the Board of education with U.S. Postal Service? (neither snow, nor ice, nor heat, nor gloom of night...)

Regardless of the reason, it's left everyone wondering about her judgment. The city got nearly a foot of snow and forced kids to travel on treacherous streets. And this benefits our mini not-yet-voting citizens how, exactly?

We must not have been the only ones thinking this was a mistake. Less than half of students actually showed up. And most of the ones that did were late.

Moreover, guess who else was absent from school that day? Cathie Black herself! Yes, peeps, she elected to spend a whole day on a press conference lauding her no-snow day decision, and postponed a planned trip to a Staten Island school. Of course, we can't really blame her. Have you seen the unplowed streets in that neighborhood?

But before we heckle "Chancellor"* Black off the stage entirely, let's give her another chance. Maybe she got some bad advice on one decision. How's she handling the real issues, like overcrowding? Well, she's got a unique solution, that's for sure.


"Could we just have some birth control for a while? It would really help us all out.”

*We say Chancellor in quotes because, well, technically this title belongs to an education adminstration who actually has a background in...um...education.