Watching Daniel Bloom

So there’s good news, and there’s bad news. Screw that, there’s some really, really pretty fricken awesome news…

Posted on: June 29, 2011

Last week was big. Scrap that, I’m not going to minimize it. It was huge, actually. In fact, so much so, that it’s taken me some time to share with “my world” what’s happened, for a couple of reasons. First, because I needed time  to absorb it and second, because I was so desperately in need of a break.  The last nine months have been exhausting, and I needed so badly to be given permission to stop thinking, and worrying, and writing about Daniel –  just for a moment.

So the news….after an extensive assessment with an amazing developmental psychologist (who I am confident is as good as they get), we got the results last week.  I was absolutely convinced that she would reinforce what I thought- and what I saw in the faces (and in many cases explicitly heard in the words) of virtually every teacher, therapist, and doctor that interacted with Daniel in the past 6 – 9  months. In other words, I was convinced that I was going to get confirmation that Daniel was PDD-NOS (which is really just an autism spectrum diagnosis).

I nearly fell over when she said it. “I don’t believe he’s truly on the spectrum”.

WHAT?!?!? ARE YOU SERIOUS?!?!?

I know – and Andrew knows – and the doctor was clear – that none of this is cut-and-dry. And we have some very, very, very large (possibly huge) hurdles to cross. But this is nothing short of amazing news, and it reminds me that I wasn’t crazy in my hopes and my ongoing faith.

But that was the good news. There is also some not-so-great news, most of which was not a surprise.

The reality is that we have a laundry list of things to overcome – from severe expressive and receptive speech and language delays to fine and gross motor delays. We potentially have sensory processing issues to address and certainly delayed social communication . In short, we have our work cut out for us. But we have also been given a great deal more reason to hope.

We have the name of a therapist that will work with us in our home to help address Daniel’s challenges. We’re on a waitlist for the Bloorview-MacMillan occupational therapists to further assess Daniel in his daycare and start working on the gross and fine motor concerns, as well as some of the sensory stuff.  And we’re beginning to work with an amazing team of speech therapists in a two-child, two-therapist setting next week to work on everything from speech and language to social skills.

Even more encouraging, Daniel’s progress recently has nothing short of incredible. In three weeks, he’s literally gone from using his first 3-word sentence routinely (“I want ____”), to using 3-5 words on a regular basis to tell us what he wants (still hard to understand, but we’re getting there). Beyond that, his desire to interact with us has become insatiable – he simply won’t shut up (even if most of his words are incomprehensible). He hugs, kisses, and tells us he “u-vays” us (love you) more times in a day then I can count. It’s like he finally cracked open the shell that was keeping him locked inside.

I know we have a long way to go…and this is just the beginning.  But what an amazing beginning.  We will, absolutely, get there in the end. I always knew we would.

As Auntie Rachel always says, just listen to Dorie, and keep swimming, swimming, swimming my little fish.

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