Monday, September 24, 2007

Raising Awareness....Fragile X Syndrome Sunday at the Fascianos



We started our Challenger Soccer season on Sunday. Matty returned for his 5th season (with Dad as Coach this time) and Benjamin for his very first soccer season. He started the Challenger league last spring with t-ball, but this was his first time wearing cleats.


I don't have typical children, so I can't imagine what it's like to attend a soccer game and chat with neighbors and peers about whatever it is they talk about at soccer games....future play dates, webkinz, the demands of "travel" soccer with the unreasonable coach who wants to have practice twice a week and THEN play soccer...because my kids, well, we show up on Sunday morning at 10, we play for an hour and we go home...it's just that simple.


What do I do during that hour since it seems that I'm the only one with nothing to do? I run across moms I know already...special needs is a very niche and clicky world (please don't be jealous)...I know them from being the president of the special needs PTO, from seeing them in speech therapy places, neurologists offices, board of education meetings when special needs funds are threatened...so they find me, and talk to me and ask me questions and complain about their child study teams, their kids schools, teachers etc.


It's a constant reminder that my boys have Fragile X Syndrome. Normally, I LOVE talking to others and when I can help, I'm more than happy to. But sometimes, I want to sit on the sideline and simply cheer for my son. Their fields were close to each other, so I put my chair in between, so I could see both of them....but I really didn't "see" anything since someone (who was lovely and I was happy to talk to) was talking to me the whole time.


We had a nice family day...I took Matty grocery shopping with me, which I never do, but he's truly at an age where he's no longer having a meltdown, and he's helpful in getting things for me, and we talk...it was really nice. Ben stayed home to nap while Dad enjoyed the NY Jets first win of the season..which is nice, but don't you think they could have at least covered the spread (3.5) so that sympathy fans like me who picked them to win in their office football pool could have gotten the credit for the win?????? OY!


After dinner, a reporter from the Asbury Park Press, Mike Riley, came to talk to us about what it's like to raise 2 kids with Fragile X. My friend (LH) had originally contacted them back in July for Awareness Day (7/22), and Mike had been in touch with her, but they couldn't see it through together, so LH gave Mike my name and number and he called me a month later. He came, met the boys ( a photog came too, so Matty was VERY busy with him...comparing notes about cameras, etc...) and we talked for about an hour. Needless to say, when that runs in the APP (Health Section), he'll let me know....let's hope it doesn't take long like the Discovery channel piece on my surgery! LOL!


I was truly spent after that...and needed to fill my head with some fluff, so my Tivo and I did come catching up and setting up since the fall season starts this week! I LOVE recording and later watching all those shows that I can't sit through when they are on, but I like to see what happens!


That's it for today....look for more about Grandma Dina's 65th Birthday which we celebrated with her on Saturday!


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