What If We Break Our Own No-Nut Rule?

For years we've lived our lives avoiding eggs, sesame seeds, peanuts, and any and all forms of tree nuts.  No one said it was easy, but since we've been doing this before mini started solids (what we affectionately called the "not so fun yet thank goodness we can still eat frozen yogurt nursing diet") we're kind of used to the drill.  Years of blood tests, skin pricks and food challenges have confirmed that these allergies ain't going away anytime soon.

Mmmmm.......almonds.

Except that a recent food challenge revealed mini is not allergic to almonds!  Not sure if she outgrew them, or if she was never really allergic and we were avoiding it just to be safe, but our world just opened up.  That's right, you heard us, so many foods we could never have before!  The one tiny brand of almond butter that is not made in a plant with any other kinds of nuts!  The cheerios made with almond flour but no other contaminants! The almond hershey kisses!  The....well, actually, that's it.  Maybe "world" is a bit of an overstatement.  But it's still a big change.

Such a big change, we were told mini has to eat almonds at least a couple times a week now to ensure it's safe.  So honey nut cheerios for breakfast it is.  Fortunately for us, it also meets her stringent food criteria as it is non-nutritious and white or brown.

All of this is exciting, but not unexpected.  Her numbers for that nut were borderline for years.  It was time.

So why, you ask, is this even blog-worthy? 

We write because we are humbled.  We write because we did not expect the sudden fear of being a huge-ass hypocrite.  We write because now we have a taste of what it feels like to be on the other side.

Suddenly we were making apple and almond butter snacks like it was no tomorrow, throwing together almond butter sandwiches without thinking about it, and putting together bags of honey nut cheerios as a snack.  It suddenly dawned on us that....it would be so easy for us to forget. 

It would be so easy to throw on almond butter instead of soy nut butter one morning, not thinking, and throw that in the lunchbox.  Imagine, after years of advocating, what a field day people would have if we were the ones putting an almond-allergic child in danger?

Now have we made this mistake yet?  No.  But this actually keeps us up at night.  What if?  What if we're the ones making that awful mistake?  And if it's so easy for us, imagine how easy it would be for people who don't live with life-threatening allergies every day?

So we're cutting everyone some slack in this area.  It is hard to be perfect.  So we sympathize with those of you who have made and will make mistakes.  The ones who are mortified and apologetic when the teacher calls to ask them not to send peanut butter to school anymore.  The ones who stop eating their almonds and slip their bags back into their purses in shame when they see you and realize.  You peeps, when you make a mistake, you get a free pass from this allergy parent.  Honest mistakes happen.

So let's be clear.  It's not you that keeps us up at night.  It's the people that either do it on purpose, or don't care either way.  Because to lack compassion like that, to be that thoughtless, to think your kids' right to a peanut butter sandwich is as important as another child's right to attend school safely, that's not easy. 

So what's our message?  We're saying we acknowledge perfection is not possible.  That's why we carry epipens everywhere.

It's all about the attitude.  The attitude, more than anything is what determines our child's safety.  So if you understand, and you try, but you still forget...we will do our best to understand too.

And to those parents of children who are allergic to almonds? We promise we will do everything in our power not to accidentally send them to school or to the playground or anywhere where we know you might be.  We can't promise we'll never make a mistake, but we can promise to do our best and take painstaking care not to let that happen, because the thought of us making a mistake that could hurt someone terrifies us.  Because we've been there, too.

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.

---

[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!