Fragile X-Traordinary: News!

Monday, November 2, 2009

News!

I'm so thrilled. Pup starts and early intervention group class on Thurs. Since I'm working Danny will be going with him. It's 2 hours once a week. I LOVE my service coordinator. With all the budget problems here in CA I'm VERY concerned as our insurance is now going to be accessed. I'm not sure what that mean, however. All I know is that I'll be paying out of pocket for things I didn't have to before. Pups IFSP meeting is on Wed. I'm really concerned about his fine motor development at this point. Still working on waving, clapping....yada yada yada

2 comments:

Vicki Davis said...: Josephine, In my region all I had to do was provide a copy of the page in my insurance book that said that PT and ST was covered for medical and rehabilative (typical for most insurances) an example would be helping to rehabilitate a stroke victim, or work with someone who broke there arm. In the case of Fragile X the services are needed for cognative or developmental reasons. Since my is explicet thats all I had to do, other's had to present denial letters. Hopefully you won't need to do more then that.; November 3, 2009 at 1:42 AM
SJH said...: I am happy that Pup got into that class.; November 3, 2009 at 10:47 AM

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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.