Clouds, May 2010

Clouds, May 2010

Monday, May 5, 2014

sixth sense

The last time I signed-on to my blog, I started drafting one of those difficult posts. One of those posts when I felt tired of the fact that most things in my life, take a backseat to fragile X.

And, knowing that other people may notice this too.


But then last Wednesday happened. 

I had a meeting in the morning at a local Senate office, to discuss the prospect of introducing Fragile X Awareness Day here in NJ. Since 2010, the US Congress has officially recognized July 22nd as National Fragile X Awareness Day. Before that time & since that time, various other states have adopted the recognition as well-- the majority date observed is July 22nd.

I reached out to other NJ families in the fragile X community, to find out if anyone might be able to join me for the meeting. In the interim my father had offered, but I didn't want him to have to drive out. I prepared myself for the fact that I would probably have to go this one alone. So a day or two before the appointment, I reached out to a fellow parent of the NFXF Community Support Network, who happened to establish Awareness Day in her own state just last year. I asked for advice on talking points (thank you, Holly!)...

The morning of the appointment I sent an email to my Dad with the subject header "just in case". I included the address & approximate directions to the Senator's office in my District. Within minutes, he replied back that he was already getting ready. I was much calmer at that point, & despite the nasty, unseasonably cool, rainy Wednesday morning, I left the house feeling motivated.

I doubt the meeting could have gone any better than it did.

The Senator was extremely receptive to our efforts, asked a lot of great questions about fragile X, inquired on the connection to autism, & noted the particularly high incidence in our state. The Senator also asked where Hayden currently attends school, & listened with interest when I explained the program we have in place for him. He reiterated his belief that consistent parent involvement is crucial in the life of any child (particularly those who are otherwise disadvantaged).

I mentioned that my next stop that morning was going to be at the school, for a meeting with the new acting Principal. Following Hayden's IEP meeting, but prior to Spring Recess, I had sent a message to the interim Principal regarding follow-ups before next year. But apparently there was a transition some time around that week, where the interim Principal returned to her primary role as Superintendent. So therefore, a new acting Principal was now at Hayden's school. (The previous one retired near the end of 2013).

I mentioned the name of the acting Principal to the Senator, & it turns out he knows her! He asked that I extend his regards & shortly thereafter I was on my way to the elementary school.

When I arrived there was a very interesting-looking program going on in the gym, which I would later learn was a Weather Assembly. As it turns out Meteorologist John Marshall from CBS (& formerly NBC), was there presenting. Near the end of my meeting with the Principal-- which I'll get to in a moment-- the woman from the front office knocked on the door. I didn't realize anyone was standing with her, but Mr. Marshall just wanted to thank the Principal before he headed out. I immediately recognized him from television & offered to take their picture. (Then of course I asked for a photo opp of my own.) 




I introduced myself & handed him my fragile x business card. An uncharacteristic move for someone like me, but it felt good.

Yes, I forgot to take a picture with the Senator... but at the end of the day I have this to show :)

Anyway, back to my original purpose of stopping at the school, my second Wednesday morning meeting also went very well. Before she & I even got down to business, I mentioned I had just come from the Senator's office & what I was there to discuss. The Principal seemed genuinely interested. I was beyond pleasantly surprised & grateful that she would offer support.

One of the agenda items I spoke about was putting a date on the September calendar, for my annual fragile X talk with staff. Every year there will be new people working with Hayden & my son may be the first & only time they ever teach a child with fragile X. I just feel it's helpful for me to give them a brief overview, & insight into his learning style. I realize he is only one of many kids they have in their class that year but if I don't remain involved, then they might not know how to, either.

In previous years the fragile X talk has taken place during a Teacher In-Service day, near the start of the school year. Well, the Principal had a wonderful suggestion to schedule the talk during the first Faculty Meeting instead... because then everyone will be present, including Aides.

I am thrilled over the idea, & beyond grateful that she is so receptive to this! Also as per previous years, I will be asking the Gen Ed teacher for a visit to their class for similar reasons. I usually read the students a book which talks about people being the same on the inside, even if they're different on the outside. This year I will also bring brochures with kid-friendly verbiage, on how to approach & interact with a child with fragile x.
Following our meeting, per her request, I emailed the picture I took of her with John Marshall. I added a short little note that it was nice to meet with her & so forth.

She sent a reply which, after the way I'd been feeling lately, pretty much helped me stand taller:
"You are a special person and mom. Don't hesitate to ask for my assistance in any endeavor from school to the state."

From someone I barely even know.

A lot of things in my life take a back seat to fragile X. But maybe I have a sixth sense for what really matters.

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