Watching Daniel Bloom

Accepting the spectrum and embracing my exceptional boy

Posted on: April 24, 2011

After over 6 months of tip-toeing around the idea, hoping and praying that maybe this was all just a bad dream and that I’d wake up one day and Daniel would be chatting away, acting like any other 2-3 year old….well, after all that, I finally think that I’ve accepted the fact that my baby boy is “exceptional”. I prefer that term to the alternatives, because it has a positive connotation, and I think that’s the best, most productive approach to take. To be the best mom I can be, I need to continue to be positive, and continue to hope for great outcomes. Beyond that, it really is appropriate. Daniel is, without a question, exceptional in so many ways. And there is every reason to believe that my exceptional little boy is going to be the exception to the rule, and overcome all the odds. I really, really believe that.

The funny thing is, after all this time, it’s almost a relief to hear the pediatrician talk about Daniel being “on the spectrum” and to realize that I’ve finally accepted it. That doesn’t take away from the fact that this was my worst nightmare, the one thing I didn’t want to ever hear or believe. I remember thinking when Charlotte was little that autism was so frightening, it didn’t bear thinking about. That hasn’t changed. It really is that scary. But it’s time to move to the next stage and focus on moving forward rather than being paralyzed by the what-ifs.

And the good news is that in some ways, a load has been lifted. It’s like I can switch my energy from wishing it away to figuring out how we can give him every opportunity possible to succeed. And what a blessing to have the pediatrician we do – who just happens to know a huge amount about spectrum kids and has a wife who knows even more (and who happened, by pure coincidence, to be in my pediatrician’s office the other day and spent half an hour working through brainstorming next steps with us).

So it’s time to move forward, and focus on getting help in a city and a system where there are far too many kids who need help and far too few resources to go around.  I realize it’s going to be hard, particularly since we already know that Daniel is going to be considered “high functioning”. It’s also going to be expensive, exhausting and it’s going to take a huge chunk of our family’s emotional and financial resources. But it’s worth every bit of time, money and effort, and I swear I will go to the ends of the earth to get him the help he needs. You can quote me on that. If there’s a mountain to climb, I will be at the top, cheering him on.

For now, I’m focusing on the positives:

1. He is, without question, improving, and I see and hear new things out of him on a daily basis.

2. We still do not have a final, “official” diagnosis, and even when we do, I truly believe that with the right help, it will not be a diagnosis that stays with him forever. There’s a reason why they call it a spectrum, and Daniel falls solidly at the “good” end of that range and he is showing a lot of signs that give us reason to have an optimistic outlook. As our pediatrician said, for now, if a label can help us to get the right supports in place, then a label is what we need.

3. I think that focusing on hyperlexia (type III) is our best chance possible to help Daniel excel, simply because he has so many of the traits that define this category. This gives us a good starting point to identify and implement strategies that will take advantage of Daniel’s strengths. We can only feel blessed that one of the leading experts (that our pediatrician recommended we try to see)  just happens to be based only an hour away and is a friend of my father.

Counting another blessing right now.

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4 Responses to "Accepting the spectrum and embracing my exceptional boy"

With all my heart, I believe that Daniel really IS exceptional. He’s beautiful in every way just as are his sister and cousins. Together, we’ll help him to make the most of his exceptionality. I love you and your beautiful boy. xoxo Rachel

i discovered your blog entry while searching for any new developments on hyperlexia type 3. my son is now 11 and this is still the best fit for him but i have to warn you, while it is great having a diagnosis that matches my son’s development, it doesnt get you very far. no one knows anything about it – even professionals in the field. it is very frustrating. our best approach has been to address individual issues rather than relying on a label. unfortunately, people seem to need the label. email me if you want to discuss it. if not, good luck to you and your son.

I am glad that I found your blog. When my Daniel was diagnosed, as with you, it was a relief. We could start planning and moving forward. There are so many points where parents with kids on the spectrum have to wait, but none seemed so long as just getting the diagnosis. Here’s to your exceptional family.

Thank you!! And thank you for your blog too :). I’ve enjoyed reading it. Ironically, the official diagnosis for my Daniel came long after I wrote this post (yesterday in fact) – your comment made me go back and read this again and realize just how long it really took. I guess it’s a little easier since its been years coming, but it still takes the wind out of your sails when it comes. But today is a new day…onward and upward :). Thanks for commenting and following.

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