Clouds, May 2010

Clouds, May 2010
Clouds, May 2010: This picture was taken from the car window on Route 80 in NJ. The lines in the sky are obviously from planes, but the fact that they form an "x" caught my attention. And after I snapped the pic, I noticed the cloud to the left as it looks like a boy's face.

Wednesday, January 2, 2013

a holiday letter to H's Principal

Today was the day that most children in most school districts returned to their classrooms. For the majority of students, this is the day that school resumed post- Winter Break. For students from Sandy Hook, tomorrow marks the day that classes resume in a different school, post-tragedy.

Just prior to Winter Break, I was gathering the very large number of gifts for various people who work with Hayden & signing a seemingly endless number of holiday cards. I am always afraid I am going to forget someone, so I start from the beginning of his day & attempt to think of everyone we want to say 'thank you' to. There's the van driver, his Aide, the Aide who is with him when his regular Aide is on lunch break, his special ed teacher, his regular ed teacher, his therapists... the list goes on. In my mind I sort of think about the layout of the school, & go hallway-by-hallway to make sure I am not forgetting anyone. I even asked one of the teachers to help me with a list. It really does take a village!

Hayden is only in 1st grade but this marks his FIFTH year at that school, including summer program. For three years he attended the (awfully named, yet awesome) Preschool Disabilities Program which has since been moved to a different school-- but he attended the program from age 3 through 5. At age 6 he was in Kindergarten, & now at age 7 he is in 1st grade. This is the same length of time that most typical children have entered the school & graduated to the next one.


So anyway when I got down the list to the Principal (or should I say the top of the list?), I decided I really just want to thank him. I thought about bringing in a really nice plant, or sending one of those edible fruit arrangements to the front office... but with the tragedy in Connecticut still being so raw, & for most of us our emotions as well, sending a physical gift didn't seem to suffice.

Therefore I sat down to thank him. Once I began writing I was only interrupted by my eyes welling up, but otherwise I plowed through this holiday letter to H's Principal like something that felt truly five years overdue:


"Good Afternoon Mr. M,

Happiest Holidays to you and your family, and we hope this message finds you
well. Dan and I just wanted to take this opportunity to express our
gratitude for your continued support. I know we stopped in for a moment
during an evening of parent-teacher conferences, but I wanted to communicate
our sentiments in writing as well. And again as far as that incredible
faculty workshop back in September to introduce anyone who had not yet
worked directly with Hayden, to fragile x, and the opportunity I had the
following month to go in and speak with the first grade class... these are
the types of efforts which will allow a mutual benefit for Hayden, his
current and future educators, and his peers. This is precisely the precedent
we want to set, and here at Grade One we have provided that necessary
platform of open communication.

We appreciate your willingness to listen over the years and working with us
to address concerns when need be, as well as accepting our overall
participation in Hayden's education. As you know we continue to maintain
involvement within the fragile x community as well, and every year our
journey is about moving towards the best possible treatments for Hayden--
whether one year involves a school visit from a specialist, or another year
a cross-country trip to a clinic, or a week at an international conference,
or advocating on Capitol Hill, and even within the very school district. We
make every effort to keep everyone informed and ensure the school has the
latest reports, the most up-to-date evaluations, and so forth.

But it takes more than determined, dedicated parents to refine what is best
for a child. Their education requires many minds coming together-- not just
two minds-- to explore and discuss options. The staff within FMB 
have always been extremely receptive. My favorite part is when we have
a visit with one of these doctors-- whether they only specialize in fragile
x or not-- and they are not just pleasantly surprised but nearly floored
over the education plan in place for Hayden. These are among our proud
opportunities to sit up straight... and brag. We've heard comments such as
the people at FMB renewing one's faith in education, we've had specialists
ask us if Hayden is in private school, and most recently a developmentalist
we took him to actually applauded the behavioral plan... I mean she
literally clapped for a few seconds and said, "you have no idea how many
districts fail to see the importance of this." Well, not ours, I thought.

In the extremely difficult wake of this unthinkable tragedy in Connecticut,
our eyes were all forced wide open to the crucial importance of ongoing
safety measures... around the nation, and certainly within our own tri-state
area. For me it felt even more eerily close to home when I learned my
supervisor's youngest niece is a survivor. She is about the same age as
Hayden, and is a first grade student at Sandy Hook. Her niece was two
classrooms over from the room the shooter was in, when he took his own life.
She walked with her eyes closed as her teacher led the class out of the
school, but would later learn she lost nine friends that day.

The first glimpse I saw of this tragedy was on the news as I stopped home,
just before heading to FMB for Hayden's team meeting that Friday. The town
name "Newtown" flashed across the screen and at first glance I didn't see
that second "w"... even if I had, I certainly didn't realize it was in
Connecticut. It's difficult to attempt to put into words the conflict of
emotions between the sheer horror of the incident, and the undeniable
(albeit guilty) relief that it's not your own child's school.

It's not uncommon for a parent of a child with special needs to have
different worries than other parents, and more long-term safety concerns. We
have heard some horror stories over the years involving non-verbal students,
or so-called professionals trusted with children whom they shouldn't have
been anywhere near. We hear about these stories in the media and an
occasional shred of comfort may emerge, when there are new laws in place as
a result.

None of us can put a guarantee on everyone's safety and happiness all of the
time. But for the overwhelming majority, thanks to you and your incredible
staff Dan and I rest assured that our little determined warrior is already
in the hands of heroes.

We wish you a blessed holiday, and we thank you.
The Capela Family"

He did send me a very brief but kind reply, pointing out that they don't always hear the positives... so it was that much more appreciated.

Well I can empathize, Mr. M-- because your staff truly warms my heart on a regular basis & that is precisely why I wanted to tell you this.
*Happy New Year, Everyone*




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