Photo by Rebecca Gould Photography

Wednesday, August 20, 2014

Susan's 504 Plan

Like many parents I know, I had a back-to-school list of things to accomplish with or for all of my children.  Susan's list looked something like this:

-- Dr. Joe (tooth cleaning)
-- Dr. Robb (she's going to get braces...)
-- Backpack (to replace the much adored 4-year old one she had from Pottery Barn Teen)
-- School Supplies (to enhance the "kit" we ordered through school -- think fun erasers)
-- Shoes (her feet grew 2 sizes this summer!)
-- First-Day Outfit
-- Haircut (we'll get there, Amanda, I promise!)
-- Revise 504 Plan

While everything felt doable, the last thing on the list -- revisions to Susan's 504 Plan made me feel slightly queasy every time I thought about it.  Just thinking about Susan's 504 Plan (and the revisions we would need -- and want -- this year) kept me awake for hours over the course of the summer.  (For those unindoctrinated, a 504 Plan is a federally mandated plan that provides for accommodations for students who have an identified medical issue or disability that "substantially limits" major life activities.)

While "haircut" has not been checked off our list (here's hoping we'll fit it in soon, Amanda!), everything else -- including Revise 504 Plan -- is done.

Many parents of children living with food allergies face this task each year -- for some, revisions to the 504 Plan are made at the end of each school year, in anticipation of the upcoming year.  For others, this is a project that the school district tackles at the beginning of each year.  While our district has typically started the 504 Plan revision at the end of the school year, no one approached us to ask that we do that in May and given all that we had going on in the clinical trial, I was just as happy to let it go -- knowing that we would have to address it when school started in the fall, and feeling fairly certain that any revisions we made in the spring would simply be guesses for the fall.

While most of the back-to-school tasks were relatively simple, although some required a bit of planning -- calling the dentist, for example, to schedule an appointment, finding a time that worked, etc.  When I thought about Susan's 504 Plan -- and considered the identified accommodations in contrast to the accommodations I knew she would need, I was nearly overwhelmed.  I knew Susan's attendance would be spotty as she completed the open-label injection/build-up phase of the clinical trial, and I knew that she would miss school for the rapid desensitization in the middle of September.  I also knew she would miss school for weekly updose appointments...and that somewhere in her day we would have to find a time for her to take her peanut dose...

As the summer wore on, and I turned the plan and possible accommodations over in my head endlessly, I felt that everything was doable...except the daily peanut dosing.  The daily peanut dosing requires careful planning.  The dose is to be taken no more than 24+4 hours after the last dose and no less than 12 hours after the last dose.  Ideally, the dose is taken as close to 24 hours after the last dose.  With morning updosing appointments (necessary given Susan's history of delayed reactions), timing becomes a problem.

For example, when Susan has an 8:30 am updosing appointment, she typically takes the increased dose by about 9:00 am, maybe 9:30 am.  For obvious reasons, the clinical trial coordinator works to keep updosing appointments early in the week, so that their subjects do not go into a weekend with a relatively new (higher) dose.  So, if Susan has an updosing appointment on a Monday at 8:30 am, she really has to take her dose on Tuesday by 1:30 pm (earlier would be ideal, of course).  But, that's in the middle of the school day...

We struggled with the timing of the daily peanut dosing in the spring, too, but with the end of the school year in sight, simply cobbled a plan together day after day hoping to hold it together until school let out.  And as the start of school bore down on us, I honestly could not see a real solution for the timing of Susan's daily peanut dose...and that's what kept me up at night.

It was hard to put this in writing, because it seemed almost too good...too be true.  And is true.  We have a 504 Plan for Susan.  And, we accomplished it in one (relatively short) meeting.  [Arriving at a 504 Plan for Susan has never been this easy...never.  And last year it was...downright difficult.  While I don't know it for a fact, I have long since felt that -- despite our efforts to be rationale, reasonable people -- administrators and other staff in our district cringed in advance of having to deal with us (maybe even while dealing with us).]

I walked out of our meeting elated.  Relieved.  I felt both physically weak...and nearly giddy at the same time, as I let go of all the uncertainty-driven stress that had built up over the summer.  I texted several close friends and called another.  As I shared my news, and talked about feeling like we were a part of a team, my friends responded with "That's incredible" and "Awesome."  

When I shared our plan with a friend who has two children with special needs in our school district she was...less than enthusiastic, pointing out many potential problems.  When I shared the plan with several others, their reactions were similar -- some wondered why Susan would get "special" treatment, others wondered about the necessity of our plan, the wisdom of our plan, and on and on.  As I talked about our plan, I was struck repeatedly by the feeling that some of the parents were...envious...maybe even something more (could that really be possible?) of our plan.  (And even as I thought that, I wondered how anyone could feel that way, given the road Susan has traveled...)  

I stopped sharing our plan with others.
And then I found myself thinking -- if I am not talking about our plan with those in our life about what our plan is, how can I blog about it?

My blog has become a place where I write openly and honestly about what is happening in and as a result of the clinical trial.

What started off as an e-mail to family and close friends has morphed into something more...something that I hope helps a myriad of ways.

With a deep breath...(and a hope for understanding) is our story:

A few days before school started, we had Susan's 504 Plan meeting with assorted professionals (read:  the Principal, the Assistant Principal, the Social Worker and the Associate Principal of Student Services) at Susan's school.  Susan, my husband and I all attended.  I was beyond nervous before the meeting. 

The backstory is simple.  We were the catalyst behind our school district's development of a (groundbreaking) food allergy policy when Susan was in Kindergarten.  While the policy was a huge improvement over the nonexistent policy, with it came tremendous controversy -- hate mail (it WAS that long ago), viral e-mail and irreparable rifts in friendships once held dear.  Even now, while I still feel the pain of friendships lost, I know I would do it all again...

Protected by an administrator who understood food allergies well, Susan's elementary school years were better than we could possibly have imagined.  However, the move to middle school left a lot to be desired.  Since I do not want to create any ill will, let it suffice for me to say that we retained an attorney who specializes in special student services after our 504 Plan meeting one year ago (just before Susan started sixth grade).  While we eventually arrived at a plan, it has never been something we have fully embraced.

Knowing that Susan needed far greater accommodations than she ever has in the past, I went into the meeting with a pit of fear in my stomach.  While I was willing to compromise, I honestly could not see where or how compromise would work.  The plan I had arrived at (and which I hoped the district would endorse) was the only workable solution I could think of.  (I was open to other ideas, but, having worried at the problem of the timing of Susan's peanut dose all summer long, I felt our options were pretty limited.) 

I dreaded having Susan at the meeting (some of our 504 Plan meetings have been rather heated), but I also felt strongly that it was important that the decision makers witness first-hand Susan's commitment to the clinical trial.  I have been her strongest, staunchest advocate over the years -- and while I have been unwavering in my commitment to ensure her safety -- I was not really prepared for her to witness the type of battle we have sometimes had.  Right or wrong, I worried that if there was not consensus, if I had to advocate for her, she would in some way interpret it that some of those in the room were not as concerned for her safety as we are (and while we have had our issues, I never thought that was the case -- sure, sometimes some of the people involved needed to be educated, to be more informed -- but I never felt that those involved did not genuinely care about her).  While she is a mature, wise 11 (nearly 12) year-old, I worried that she would not be able to process the subtleties of the meeting.

As Susan, my husband and I walked into her school, I found myself trying to find something encouraging to say.  Susan is perpetually positive and optimistic -- with a calm exterior.  She always sees the best in people and walks through life expecting things will go well.  In a quiet, understated way, Susan is a glass-half-full (or maybe-even-overflowing) kind of kid -- not in a bubbly, cheerleader way, but in a steadfastly calm and certain way.  She just knows it (whatever it may be) will work out.  I was deeply concerned that our meeting might shake Susan's world-view to the very core.

My concerns were compounded by the fact that I knew we would be meeting multiple new people (some new to the district, some new to us) -- a new Principal, a new Associate Principal of Student Services, (who had called me after-hours on her first day -- a good sign, I told myself, that she was taking this seriously...), and an Assistant Principal (who had been tremendously helpful over the phone, but still...who knew?).  While last year was tremendously difficult in many ways (we never did see eye-to-eye on Susan's 504 Plan, for example...), I felt that over the course of the year the teachers and administrators came to see Susan as a real person -- not just some kid with food allergies.  I knew we would be starting over, and I was afraid of the ground lost.

While the "playing field" has shifted as the result of significant staffing changes, as I prepared for our meeting, I could not shake the worry that clouded everything I did.  For, while I believe we are (at least generally speaking) rational people, it seems that (at least in this school district and in our community) as a result of our advocacy efforts, we are viewed as...?  (I'm never really sure... -- not rational...maybe not reasonable?  Maybe...even worse?) 

And yet, even now, nearly eight years since our initial advocacy efforts in the school district forever changed the landscape of our friendships -- altering our social lives, challenging our sense of belonging, shaking to the very core our beliefs -- I would do it all again.

Despite what some people believe, it has NEVER been just about keeping Susan safe.

When we pushed our school district to write a food allergy policy, our desire to keep Susan safe `was only part of the equation.  Our efforts have been for all students living with food allergies, for food (or dietary restricts) should not define anyone.  I have always believed that understanding is the key to management of food allergies (and understanding requires education).

Even now, Susan's participation in the clinical trial goes way beyond a potential treatment for HER airborne and contact allergy to peanuts.  While we all hope for an incredible outcome for her, if the Xolair is as effective as initial results suggest it to be, it could be a huge step in the treatment of food allergies for hundreds, thousands...maybe more.

So, as I walked into our 504 Plan meeting -- flanked by Susan and my husband -- I did so with tremendous trepidation.  While I am not sure I can articulate why, it was tremendously important to me that our 504 Plan be good not just for Susan, but, for others like her.

It is awfully difficult to advocate for something (anything) if those across the table from you think you are irrational, difficult, uneducated, biased, inflamed...or worse.  So, as I entered Susan's school, my stomach churned.  While in years past our 504 Plans had room for give and take (even if I did not like it), I felt there was little room for negotiation in the revisions we needed in Susan's 504 Plan for the year.

While management of Susan's peanut dosing is complicated in many ways (medication in the morning, medication just before the dose, food and water with the dose, restrictions on activity level, showering, and the mandated supervision), it is very easy in other ways.

I lay awake many summer nights (listening to Susan's deep, even sleep-breathing) wondering how in the world we would manage school with the most intense part of the clinical trial beginning just three weeks after the school year began.  While I had many concerns, I always circled back to the question of "When to dose?"

We had Susan's 504 Plan meeting at 7:30 in the morning.  When I realized that the timing of our meeting was unfortunately (or fortunately?) at exactly the time Susan had been taking her peanut dose, I paused for a minute.  After all, we fought for a peanut and tree nut restriction in our district...should I, would I allow her to walk into the school with peanut protein?  After significant internal debate, I decided it needed to be done.  And unlike the risk of sticky, oily, smeary peanut butter, Susan's dose was self-contained (and minuscule).  Eventually, I decided that since school was not in session and knowing that we would exercise tremendous care, we should just go with it.  Perhaps it would even be helpful for the administrators we were meeting with to see what it was like for Susan to take her 30 mg dose of peanut protein... 

We entered the meeting, Susan carrying her peanut dose, and a straw.  We started with introductions.  Susan was her typical quiet and shy self, although at this point we all know she has a voice just waiting to get out.  She opened her peanut dose with her -- blended with Dark Chocolate Tera's Whey powder and milk.  As we explained that she was taking her dose, she added that she would have to "slurp" when she was done to be sure she got it all.  We all laughed, and with that, I started to relax.

As we talked, it quickly became apparent that the people in the room were prepared.  They had read the e-mails I sent, and they had checked out my blog (which really has become the best way to get a sense of what the clinical trial has been like for Susan).  I was beyond impressed by their preparation, and I started to feel like...just would be..."okay."  Whatever that meant.  I liked that the administrators in the room had clearly prepared for our meeting.  They had read the e-mails I sent providing an overview of Susan's food allergies, and they were prepared with questions and ideas.  They had even tweaked Susan's schedule a bit in advance of the meeting...

I felt myself relax.  If understanding is the key to management of food allergies, we were off to a good start.  While most of the people at the table did not know Susan, they had taken the time to learn about her.  I felt like we were going to work together to make a plan.  We were a team.

The answer to the question that kept me awake hours this summer?
(When to dose?)
At 7:30 am.

With this plan, Susan will be able to take her dose at approximately the same time every day (with a slight exception on the days that she goes to the Clinical Research Unit for updoses).

With this plan, Susan will be able to skate from 6:00 am - 7:30 am, and then take her peanut dose.

With this plan, Susan will miss her CAPE (read:  Art, then Music...and should the clinical trial go on that long, STEM and CME) classes and her PE class. 

With this plan, Susan will NOT miss any significant instructional time.  (Nothing against Art, Music or the other classes...and no harm to PE, which IS a key component of her Dual Language Immersion Program as it is conducted entirely in Spanish...)  She will NOT miss lunch (as painful as it was at times last year, I still believe it is a key part of the day in middle school -- at least from a social perspective), and we will NOT have to constantly, every day figure out how and when she will take her dose -- it will be neatly scheduled as early as is reasonable in her day...and this plan should keep it from completely taking over her day...

I have been told (by people I am sure are well-meaning) that there is simply no way Susan can miss PE, as it is a state requirement.  I have been told that "no parent in her right mind" would allow her to miss art (the art teacher at our school IS incredible)...

And yet, Susan has to take her peanut dose SOMETIME each day.  And the sometime has to be within 24 hours of the previous dose, plus a maximum of 4 hours.  And, we know that if we can maintain a 24-hour interval it is ideal.   So, while there are those I've encountered (far more than I would have expected) who DO NOT see this as such a good plan, those involved -- Susan, us, the administrators -- all see it as the best possible option.

In a matter of minutes, really, the biggest, most difficult part of the revisions required in Susan's 504 Plan were done.  Phew.

(We also scheduled a follow-up meeting for the week after Susan's rapid desensitization, as everyone in the room recognized that however good our plan might be, it might need some revisions then...

And as much as I wanted to be able to revisit some of the parts of the 504 Plan we never really loved last year, I knew we could not -- for we agreed when we began the clinical trial that we would not change the management of Susan's food allergies in any way.  As we were wrapping up our meeting, I kindly and ever-so-carefully let it be known that it is my hope (my plan, even if the clinical trial does not result in Susan needing fewer accommodations) that we can revisit certain components of her 504 Plan (read:  the lunchroom...)

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