Clouds, May 2010

Clouds, May 2010

Monday, May 4, 2015

happy tears

I do not have the faintest idea why I am so emotional-- good or not so good-- in response to most things Hayden... (said no parent of a child with fx, ever)

Well as of late, our Sundays have been no exception to this pattern. Hayden recently joined a t-ball group with his cousin Kaitlyn. In her township, this is one of various activities available through a recreation program called PEAK (Parents of ExtrAordinary Kids). She has participated previous years as well, but we have never been in a hurry to sign Hayden up for sports (his interests tend to lean towards cars, trucks, & tools to name a few). 

Well needless to say we decided to give this a try & our expectations were to get him there. Period.

So, here we go with the emotional response... because as soon as H got to the ball field, my eyes welled up with pride... the way he immediately ran ahead of us & was anxious to participate.. & when I saw him go up to other kids, extend his hand, & say, "I'm Hayden"... I can barely put into words how wonderful that was to witness. For me this was already a positive memory, regardless how the rest turned out. 

Of course I was taking pictures every minute or so, & when I saw the X in the sky my heart skipped a beat. For anyone who knows me & knows how this has been my thing for about five years now-- (possibly) obsessed when I spot an X in the sky-- I look at these pictures of H at the tee with that beautiful sign above him & it just warms my heart.

On that note, without going into every detail of every ten minutes, I will say the second week was amazing as well. A couple of people from the school expressed interest in wanting to see him play, but I didn't say anything to H in case one or both of them couldn't make it. And when we showed up the following week for his second game, he had an entire cheering section waiting for him-- literally. Over by one of the picnic tables there was an entire group ready to root him on.

(Cue more happy tears...) 

I still get choked up every time I look at that picture & the pure joy on his face.

I missed yesterday's game-- week three-- but had a very good reason which I'll get to in a moment. (It actually turns out we have multiple scheduling conflicts with the t-ball games, & despite our best efforts he is going to miss more than one but I am glad we tried.) Hayden still had a wonderful cheering section... both sets of grandparents were there, both of his Aunts, & all of his younger cousins (his second older cousin, Kaitlyn's brother, was at the last game) :) I wish I had been there to spend time with my sister & nieces who schlepped out from NY... but I also heard when they were at lunch after, Hayden tried a smidgen of chocolate ice cream! (And so did his jersey which I spot-bleached, but didn't know what the heck the stains were from.) Sensory issues frequently interfere with his diet so I love when he tries something out of his comfort zone! It does happen occasionally! Here is an adorable picture of Miss Flora happily encouraging him:

Anyway, the reason I missed it...
The NJ Community Support Group (CSG) is part of the National Fragile X Foundation's (NFXF) parent volunteer program, & as most people know I co-lead the NJ CSG alongside my friend Paula... (here we are if you ever need us...)
We had set the date for yesterday's Planning Meeting before I knew about t-ball. But we had a very fun, productive meeting which Paula graciously hosted in her lovely home.

Amazing mamas <3 
I learn new things every single time I am with other parents within the fragile x community. Like they say, hands-down the very best & most incredible club that we would not have wished to be a part of.

The next bit of good news I've been anxious to share ever since we had Hayden's annual IEP (never thought I'd say that one...), is an unexpected change that I successfully FIXED. 

So when I got the revised draft of Hayden's IEP & I saw the summary under "Parent Concerns"... there went those happy tears sneaking up on me again. It states:

"Mrs. Capela is very happy with Hayden's growth in all areas. She was concerned with the changes to [something something]. Hayden performs significantly better when there is structure and routine. After the conclusion of the IEP meeting [in other words, upon receipt of my letter] the Andover district made changes to the school's [something something]. Hayden will now be eligible to [have things the way they should be ;) ]."

All because I spoke up, & supported my concern with specific reasons why it should be fixed. Advocating works!
Okay, well, maybe not every single time... but even if you don't achieve the exact outcome you were striving for... it is still VERY important for decision makers to hear your voice. That much I can promise.

Speaking of advocating, last but certainly not least...
One year ago I met with Senator Oroho to discuss National Fragile X Awareness Day being recognized in the state of NJ. The date would be aligned with the official national date of July 22nd... which by the way has been recognized by Congress since 2010, & was also adopted in various states both before & since that time... with July 22nd being the majority date of observance.

Senator Oroho & Senator Vitale are both Primary Sponsors & today, May 4, 2015 the bill was reviewed by Senator Vitale's Health, Human Services & Senior Citizens Committee
When we have the official word that it has passed, the world will know :) 

This concludes my long overdue blog update for now... stay tuned, I will return... <3