Fragile X-Traordinary: Sing us a song, you're the piano man......

Thursday, August 6, 2009

Sing us a song, you're the piano man......

AJ has been taking piano lessons since January and although I sometimes have to push him, he is learning a lot. Danny and I always talked about getting our kids music lessons and Mr. Brisley his teacher (school custodian by day.....musician by night!) is so patient with him despite his sometimes tantrum behaviors. Here he is in a jam session with his teacher. You can see Mr. Brisley on the drums telling AJ which notes to play. The objective was to keep in rhythm.

In Pup news....
He is mastering the sippy cup! Goodbye bottle! (Maybe)

2 comments:

Jen said...: That is one cool piano teacher! My lessons weren't like that when I was his age. (I did have a pretty cool piano teacher when I was a little older, though).; August 7, 2009 at 6:42 AM
Christy said...: Hi. This is totally random, but I was searching Fragile X blogs and came upon yours. My son is 15 months and was just dx with FX. We are heading out to the MIND institute next month at UC Davis. Basically, just wondering about all the developmental delays. It is so hard because no one can tell me what he should be doing or when we will be able to do something. He cruises right now, but no clapping (like you I will have a party for that one!). So any insight that you have would be great! Also, what was his repeat and methylation status? Thanks, Christy
My e-mail is christychoat@gmail.com.; August 7, 2009 at 1:05 PM

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Welcome to Holland

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…… When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.