Watching Daniel Bloom

How did we get here?

Posted on: November 12, 2010

Daniel was born in May 2008, and the moment he arrived, I swear he looked deep into my soul and and I fell madly in love.  Since then, he’s grown into a very tall, very loving 2 1/2 year old who can’t get enough of Buzz Lightyear and who is never happier then when he’s chasing his 4 1/2 year old sister around

When Daniel didn’t start to talk at 18 months, or even 24 months, I really didn’t worry – his sister was a very late talker who did the whole speech therapy route, and she came around in her own time. In fact, Charlotte just started junior kindergarten two months ago – she’s a textbook case of the late bloomer who “never stops talking” now. She’s even starting to learn to read and write…so really, knowing that, it was easy to brush off concerns about Daniel’s late speech development.

But as more and more time passed, I had to admit that it started to nag at me – over the summer, his “late talking” became more obvious. On top of that, in late August, his sleep suddenly became disturbed – he went from sleeping 12 hours a night to waking at least 4, 5, 6 or even more times a night. On bad nights, he was waking up every 20 minutes.  My exhausted little boy became increasingly frustrated in the day, and I started to notice that he seemed increasingly fussy, withdrawn, and defiant. I wasn’t the only one – his daycare teachers also noticed, and came to me with their concerns.

I give them credit for starting the conversation – and for suggesting that we bring in a resource teacher to make sure that Daniel was getting the best experience possible in the classroom. Really, that started the ball rolling and I feel like we’ve been picking up speed ever since.

In mid-October, after meeting with the resource teacher, we took Daniel to our GP to talk about the concerns that had been raised. She referred us to a pediatrician, who we met at the end of October. To say that the 15 minutes I spent with the pediatrician was scary and upsetting does not come close to explaining what that day was like. After trying to quickly and clearly explain Daniel’s history and our concerns in a matter of minutes, the doctor looked at me with a clear look of concern and urgency. He gave us a potential differential diagnosis of nocturnal epilepsy and/or sleep apnea with possible autistic traits. He also sent me off to Sick Kids for extensive chromosomal tests.

And my world as I knew it was changed.

I put Daniel back in the car feeling like I was in shock, and drove down to Sick Kids in a fog. I called Andrew to try to explain, but the whole thing was more than I could comprehend never mind communicate to someone else. And so began the real journey.

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