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.”). 

5 Things I Learned At My Kid's Piano Recital

Mini had her first piano recital today.

This was an interesting cultural experience that was new to this musically-challenged mother.  After entering a hot small room packed with 18 kids and their families, she watched all the 4-7 year olds, one by one, take their moment to shine.  Here are the few things we learned:

1) A keyboard is just not the same as a piano, even if it's a good one.
We cheaped out seeing as how none of us know how to play a piano, nor do we have room, so keyboard it was.  Poor mini fumbled for the first few notes getting used to the pressure she needed to exert on the keys.  Whoopsie. 

2) Some kids practice, and some kids really practice.
We thought mini was ready.  She practiced every day, on her own.  Not at a formal time, just whenever she felt like it.  We heard her two songs the morning of the recital.  But clearly, seeing as how smooth the other kids played their pieces, we underestimated the amount she should practice.  Another clue that the other kids played it too much: they kept going over, repeating the song even after it was done and the applause had started.  After this had happened a few times, and a 5-year old boy asked his mom "not 5 times?" we started figuring it out.

3) Your child is not the piano prodigy you think they are.
We now suspect part of the incentive to run these recitals is to humble a parent or two.

4) The teacher is better than you think they are. 
If the goal was to sell us on the need for more lessons, it worked.  One 5 year old just came in and schooled everyone with his version of that king song who's name we can never remember from "Shrek".

5) Kids can surprise even the most seasoned piano expert.
Hands down the funniest moment of the night goes to the poor 4 year old boy, who sat in his chair, played 3 off-key notes, then ran.  His mother got up in front of everyone to announce he had to go to the bathroom.  It was so funny we hope someone got it on camera to replay it for his teenage friends someday.  As everyone bit their lips to stop themselves from laughing, the teacher summed it up: "there's a first time for everything." 

Indeed, there is.  Congrats, mini.  Mama is so proud.

5 Ways Times (and words) Are A-Changin'

Yo, yo, yo, peeps!

What's up with no one talking in full sents anymore? At least no one cool or under the age of 18, it seems. 

We're down with the shorthand on texts and tweets, but it seems to have spilled over a bit too much into our lang, ya know?  Has anyone realize the extent to which this is impacting our pop cultch?

1. Kids:  Friends, parents and educators are henceforth known as the posse that shall be called BFFs, 'rents and ur teech.  
2. Working professionals:  After permanently losing wasteful words in emails such as "dear" "please" "thank you" and "sincerely", businesspeople are now bucketing all emails into two areas: "CYA" or simply "biz deets". 
3. Therapists:  Lengthy introspection and intense psychotherapy have been replaced by simply telling their patients to "figs it all out".   
4. Doctors:  Medical histories are now called "MD deets" 
5. Spam:  Spam is shorter as lengthy emails are reduced to phrases such as "#nigerianking needs ur $$ stat". 

We'd say more but then we'd be over our unoffish char limit.  Hmmm.  Maybe this short speech thing ain't so bad. 

I Hate to Ask, But...

Apparently you readers see this as a food allergy mom blog.   This is not so surprising we suppose.  "Women with twisted senses of humor who work in advertising and have children who also happen to have food allergies that they often write about" was not a category.  Go figure. 

What was surprising was seeing this little blog get almost 300 votes in just a couple of days after being nominated for "Top 25 Food Allergy Mom Blogs".  So is the fact that "Top 25 Canadian Mom Blogs" is the next category.  Interesting...

Here's where the favor comes in:  we're just past 25 right now and would really like to keep the badge!  It's pink and all, you see.

So if you have enjoyed reading any of these warped thoughts, we'd really appreciate a literal vote of confidence.  You can click on the badge in the right-hand navigation bar, or follow this link:  You can vote once a day until Nov. 16th.  In fact, you can vote even if you haven't enjoyed reading this blog.  We won't hold it against you.

Thanks, lovely peeps!  And more importantly, thanks for reading!

The Halloween Horror Snow

New Yorkers were taken by surprise today by the first October snowstorm in the city since....well, ever.

The snow messed everything up.

Occupy Wall Street protesters were brutally reminded of the generators they had lost just one day ago but chose to stay and freeze.

Other Manhattan residents were just dumbstruck.  Had it ever snowed in October? Well, technically there was a quarter inch in 1925 but with vanity sizing and all that a quarter inch in 1925 is probably less than a tenth of an inch by today's standards anyway.

What is the reason for this bizarre weather?

Well, some people think the end of the world is upon us.  One theory is that we all died May 21 and are now in some alternate universe without knowing it.

That's one way to go.

Another theory is that while the world didn't end on May 21, a chain of events was set off that will build up to our imminent destruction. 

People who subscribe to this theory were doing giant "I told you so!" dances in August after the Gotham City was hit by an earthquake and a hurricane, in the same week.   Since then, residents have been bracing themselves for locusts and cattle sickness, as surely these must be next.

Others are saying the May 21 date is really October 21, and they too are probably doing little dances today.

These are all interesting theories.  But we have another one.

You see, none of it made sense until now.  The earthquake, hurricane, both of those were rare, mild, and technically the earthquake wasn't even anywhere near New York.  So to link this recent snowstorm, a storm that brought us thundersnow, no less, to those events is odd.  Thundersnow, peeps!  Do we have to hit you over the head?

Clearly, we must blame the Canadians.

Is it a coincidence that the bizarre October event coincides with the arrival of several friends' relatives from up North? We think not.  Is it a coincidence that just one day prior, the team that won the World Series just happened to be the one closest to Canada?  Did you think it was a coincidence that this event happened exactly one hundred forty-four years, 3 months and 29 days after Canada officially became a country? Do you not see these facts staring at you in the face?

It was only a matter of time before those mild-mannered folk up North finally realized they had twice as much land as everyone else and set out to conquer the rest of North America.

It's a genius plan, really.  First, they hit us with their freak snow and next thing you know there's Caribou all over the place and every tap in the city is filled with Molson.  Then, when we're weakened, they hit us with (gasp!) their socialist medicine and gun control laws. We must stop them before it's too late!

Betcha thought those guys were dressed up for Halloween, didn't you?

Did you not see those Royal Canadian Mounties riding around the village today?  You didn't actually think those were Halloween costumes, did you?  That's exactly what they want you to think.  They're stealth, these snow-lovers, we tell you.  Stealth.  But what else would you expect from a nation whose first official citizen was named Snorri?*

Fortunately, we're onto them.   So next time you see a whole bunch of Canadian tourists "in town" after a bizarre aberration of Mother Nature, be on guard.  We're just saying.



*You can't make this stuff up! "Snorri", born in Vinland around 1000 A.D, was the first North American child to be born of European parents (Thorfin and Gudrid).