Clouds, May 2010

Clouds, May 2010

Thursday, September 6, 2012

the invisible pedestal

So, about that workshop I mentioned in yesterday's first grade post... allow me to elaborate (tiny bits of this may be repetitive from a previous post or two):

I used my last day of paid time off for the 2012 calendar year, to participate in a fragile x syndrome informational session at H's school. During the final teacher-in-service day before the official start of the school year, we had an entire 2-hour block of time reserved just for this focus... the focus of my 7 year old son... my 7 year old son with fragile x syndrome... simply because I asked for the opportunity.

I was truly blown away to learn that Hayden's speech therapist of the past four years had put together an entire PowerPoint presentation. I entered the library yesterday afternoon and hanging from the ceiling was a large screen with the cover slide of the presentation already displayed, ready to begin. It was titled 'Fragile X' and in the bottom right corner was the name of his speech therapist, the name of his former teacher, and 'Cara Capela, Hayden's Mom'

And yes, you read that correctly: Hayden's former teacher who worked with him in both preschool and kindergarten and is technically no longer his teacher... but essentially out of the kindness of her own heart (and her adoration towards H), has remained involved in securing his education plan.

Anyway, the very impressive and thorough presentation included information gathered from some of the top specialists in the Fragile X community including Dr. Hagerman from the MIND Institute, as well as Dr. Sudhalter from the (most local) Fragile X Center at The George A Jervis Clinic of The Institute for Basic Research.

After paying me a very unexpected and generous compliment, Hayden's speech therapist opened the presentation by sharing something she remembered from 2008 when I first met the team of people working him at the school. She recalled, "Mrs. Capela said Hayden does not have autism."

And so began the portion on explaining the non-household-name syndrome, of fragile x. She addressed how fragile x and autism are connected, and how they are not, and which similar characteristics that Hayden may exhibit.

Then she and Hayden's former teacher spoke about his strengths (memory, sense of humor, and determination to name a few), as well as his challenges (motor skills, hyperactivity, and anxiety to name a few).

If you had been me sitting there... if you had seen the enthusiasm on the faces of these two amazing, admirable women who were standing up there in front of 20 or so of their colleagues, on behalf of MY SON... you just might get an idea of the gratitude which completely overwhelmed me. When the hour-and-a-half long presentation was through all I kept thinking was if there is even a soul in that room who was not receptive to this, for any reason-- because I know it's a lot of information to be presented with-- if nothing else, the heartfelt words coming from these two women would be enough to have anyone convinced that Hayden is worth the effort. And then some.

During their presentation they gave examples, and they recalled certain instances which were funny, and events which were surprising, and situations which were difficult. And other staff around the room who know Hayden would chime in and they'd laugh with them, or nod to their point... and it was as if we had this imaginary pedestal in the center of the room and Hayden was on top of it, with that beaming smile of his.

All of these people there to discuss how to support him was absolutely surreal. Here we are in New Jersey, in the middle of an education system trying to survive from an unprecedented economic climate, with funding slashed, the number of staffed reduced, programs affected across the board... etc, etc... and I had this incredible opportunity to say okay, I am going to do what I can with what resources and people we have available to work with.

When I was younger I imagined I would get married one day and have a family. I also imagined I would go back to work because for me, it felt right to maintain a sense of accomplishment outside of the home. It will warm any parent's heart to interact with their child, and it's indescribably fulfilling... but it also feels normal to interact with other adults, and I enjoy being able to contribute to our household while doing so. I was going to find my own appropriate work/family balance. It may not be suitable for the next mom, but it felt right for me.

So readjusting to our unexpected parenting experience, and readjusting this work/family balance, and readjusting my idea of the future... I am constantly experiencing a fluctuation between mourning our former expectations, and accepting this life that we have now.

I know that all of our challenges and difficult times will not just suddenly, permanently dissipate. There is no magic wand.

However... as I entered that library yesterday afternoon, it was as if I was walking through a new phase entirely. For the first time in a long time, I felt an unparalleled sense of accomplishment in myself and more importantly pride in our son, and most importantly hope for the future.

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