Last thursday night i was sitting beside a lovely pool, surrounded by palm trees and feeling like i had finally, found, some friends. Some parents who could sit and listen to me tell my story about my oldest son. My child who has filled me with so much joy and happiness, and grief and regret. My toby.
Although my weekend in san jose was filled with meeting wonderful, fun, intelligent women, the conversation i had that night will always be the highlight of the weekend for me. Because i felt okay to talk about how difficult it has been. How hard it is to spend so much money on one of your children, on their therapy, and feel lost in a system without a diagnosis that stands up to any governmental criteria.
Toby is a big question mark. When i got off the plane and greeted my children i was struck by toby. At how bad his speech is. When i am with him everyday it becomes so easy to lull myself into believing that he is getting better. That he sounds like all the other kids. But, for the first time, i was away from him. And with the distance of time i was grief stricken to really hear how bad his speech is.
And then i watched him while we were in vancouver. How he was constantly berated by other adults for being too loud, too rough, too much.
And so now, today, i am back at home. And i will follow the advice of some new friends and find him a diagnosis that will help him, help us, to get every single bit of help we can.
Posted by Jess at 12:13 AM Permalink
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Oh Jess, I'm so sorry.
My heart always drops so heavy when Alex is around other adults who don't know him well. They become agitated and frustrated... uncomfortable. They look at me as if to ask "What is wrong with him?"
I want to yell out "NOTHING! He just has a bit harder time putting his feelings into words! You standing there telling him to calm down, slow down, be quiet is just making it worse!"
I can't think of a better advocate for Toby than you and Shane.
Posted by Chantal | August 4, 2006 05:54 AM