Saturday, December 31, 2011

A Toast To 2012: The Year That Won't Suck

In thinking about our last post of the year, we struggled a lot with how to characterize 2011.

On the one hand, we could simply title this post: "Good riddance crappy 2011, hello 2012!" The end of the year is a time to take stock as all the "Best albums/fashion/dirty politicians/etc. of 2011" lists in the media remind us, and the only thing we're taking stock of this year is that if we ever have to go through another year like this past one we'll never make it.



New York has a population of over 9 million yet the city can sometimes be one of the loneliest places in the world. It's not a city with a built-in community. You have to find your own community, your own niche, and in a city with so many things going on that is easier said than done. And, if like most New Yorkers, you work 50+ hours a week, you barely have enough energy to go on seamless web and order your dinner, much less try and go out and talk to your neighbor. It's a sad cliche in life that you learn who your real friends are (or aren't) during tough times, and this year sadly re-proved that to be true. So as we take stock of things we cannot elaborate on: the disappointments, multiple near-nervous breakdowns, and lost friendships, we pause to observe that living in a city of 9 million strangers doesn't necessarily help with that. When you struggle you struggle alone.

But nothing is entirely black and white so to say last year was "crap" and leave it at that would leave many other things unacknowledged. This was also the year of our first writing successes. The year mini learned how to ride a bike and tie her shoes. And while we had our backs turned it was also the year mini evolved from an innocent young person to a toothless and beautiful young girl, fully immersed in the journey that is middle childhood.

And the loneliness? Turns out that despite living amongst so many strangers, sometimes New York can also feel like a small town. The school mini attends? A brand new community for both her and her mother. The neighbor who was a stranger? A fellow alum from University. The lady at the haircut place who needed a door opened? A friend whose children went to school with your friend's child. The lady on the bus? A friend's mother. The runner you walked by on the street? Your child's piano teacher. The creepy stranger at the coffee shop? A friend of a friend from abroad. And so it continues...

So while we are tempted to talk about all the things we hated about 2011, the light at the end of the tunnel is but 12 hours away.

How will we begin 2012? Reminding ourselves that "hey, you still have your health" as we relish in the soreness that comes from celebrating our muscles in exercise class this week. Enjoying the peaceful feeling that accompanies watching a child sleep. Sipping champagne, surrounded by friends, hopefully dancing our @ss off. Feeling gratitude for both old friends that have been a part of our lives and new friends that have come into it. And excited about the adventure and possibilities that lie ahead in 2012.

Sunday, December 25, 2011

A Little Boxing Day Advice

With Christmas on a Sunday this year, the whole country has Monday off as a national holiday.  Which means one thing: more people shopping day-after-Christmas sales than ever.

So in the spirit of consumerism, let us give you a little Christmas shopping advice from this New York Jew. 
Just because it's on sale, doesn't mean you should buy it.
Seems simple, yet so many people ignore this advice.  "But Poker Chick", you might say.  "40% off! When do you ever get zebra-print earmuffs this cheapAnd sheets!  Egyptian cotton sheets at 60% off! So what if they don't match anything in my bedroom, it's the bargain of 2011!  And --- oh my goodness, it's the brown and crisp! I've seen this on TV! Just think about all the money I will save not ordering in."

We know, we know.  This advice is a total buzzkill and seems especially odd coming from a woman who told you about all the wonders of Sephora.  But that's when you're looking for something specific.  It's the impulse purchase, rationalized by the word "sale" that we are convinced has something to do with the financial crisis our country is in.  See, retailers are counting on this "60% off saves me money!" mindset.   We've fallen trap to this ourselves.  And it's great when you were going to buy that anyway.  But if it wasn't on your list, just remember, you can be smarter. 

The real math is this: 40% off $100 is still $60 more than zero.

Instead of shopping, might we suggest you maybe use that day to get a jump on your New Years' Resolutions, such as catching up on your correspondence.  You can use the first note to send yours truly a thank you for saving your wallet.

Happy Boxing Day, peeps.

Monday, December 19, 2011

Happy Chanukah. Did you just make that gelt from scratch?

One could call it dedication.  Wanting our daughter to have a bag of foil-wrapped chocolates like her friends in school tomorrow, we made some. 

However, one could also call it desperation.  Despite knowing that Chanukah was coming for weeks, and that her school would give out gelt, we did not order the safe chocolate in time to arrive for the party.  Of course, the party is a day earlier than we thought, but that's even worse. We write about allergies and planning for school celebrations all the time; we talk the talk but can't walk the walk?

So when school called asking what she would eat, we panicked.  Suddenly it dawned on us that why not make our own coins! How hard can it be? One quick trip to a store and $6 later we had molds and wrappers in hand.  A minor domestic miracle!

Dedication? Desperation? How 'bout just plain old procrastination. 

Happy Chanukah all!

Tuesday, December 13, 2011

Top 5 Superpowers You Didn't Know You Had

Did you know it's Superhero week?

We didn't.  In fact, it's not.  This monumentous made-up week would have come and gone unnoticed if not for the dear Nancy Davis Kho who wrote a fabulous blog entry about her superpower of timepacking.

It was so brilliantly funny, it inspired us to write our own.  In no particular order (ahem), here are the superpowers motherhood has granted us:

  1. Mind reading: I have the uncanny power to know what you are thinking before you will say it. It’s true! You don’t even need to open your mouth, I will say it for you, even if it’s not what you wanted to say, trust me, it’s what you were thinking.   
  2. No-soap sensor: You may have run the water, but if I hear the pitter patter of your little feet, my supermom no-soap sensor will tell me whether or not you used soap, so that I may direct you back to re"wash", even if I haven't seen or smelled your hands.  Talk about efficiency!
  3. Super nighttime alertness: Not only has motherhood introduced me to the wonderful feeling of constant sleep deprivation, my superpowers ensure I wake at the drop of a pin, just in case there's trouble.  My super nighttime alertness makes sure I hear every pee break.  I'm there for the coughs, the fevers.  The drunk guy cursing on the street at 3am.  And for every razor falling in the shower due to a poorly-functioning suction cup, I'm there.  
  4. Nag-o-meter:  Nagging is a superpower, right? It must be.  I could win a nagging contest with anyone.  If you need nagging, I'm your woman.   I can nag at mealtimes, bathtime, on the way to school.  I'm such a good nagger I don't even need a kid to nag! Just ask my colleagues!  
  5. Transcendental memory: My memory is so good, I can remember every detail.  Every piece of broccoli you promised to eat and didn't.  Who broke the faucet.  And your name.  I remember names so well, I bypass a parent's name and go straight to the kid's.  Heck, I'll even call them by their own kid's name because I have remembered their names so well I don't even need to use it anymore.  That's how good my momnesia is.
Anyone else have awesome superpowers?  

Monday, December 12, 2011

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.

Sunday, December 4, 2011

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=137and 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.”)