Watching Daniel Bloom

Happy birthday to my amazing, affectionate, bright and beautiful Daniel…with an apology.

Posted on: May 15, 2013

I waited and waited and waited to write this post. In fact, I wrote it numerous times, with different words, and deleted it every time.

My darling husband gave me the go-ahead to write,  but he wanted me to be 100% aware of what I was doing. I can’t take this one back….arguably, once it’s on the internet, it’s permanent, and he (and I) wanted to be very sure that I was sure that I was doing the right thing for Daniel, knowing that he isn’t in a position to have a say in this decision. I can assure you that this responsibility weighed heavily on me (for literally months).

In fact, for  a long time, I thought I just wouldn’t post here again, because I couldn’t continue to write honestly without telling this part of the story. But the more time passed, the more I knew what I needed to do – not just for me, but for him. So here it is.

I would like to introduce you to my amazing, incredible, loving, affectionate, sweet, chatty, social, adorable, smart, giggly…autistic son. And yes, those pronouns all go together. And yes, your image of autism is probably at odds with that description. And that’s why I’m telling you this, and hoping, that in some  small way, I can help increase understanding and eliminate any sense of fear or shame or preconceived notions around that word.

Because I never, ever want my son to feel that there is something about him that he should be afraid to talk about.

For that to happen, I need the rest of the world to stop projecting that fear, become more aware, and most importantly, to become more accepting, of those on the spectrum.  And I believe the only way to do that is by helping people to understand.

Plus, I need to scream out to the heavens how incredibly, unbelievably, passionately proud I am to be his mother – for very good reason.

But back to the understanding part…I think the easiest way to help you understand is by introducing you to Daniel. So if you haven’t had the privilege of meeting him, this is how you’ll know him….

  • Look for the 5 year old with big round hazel eyes and a deep, infectious laugh who is telling the lady in the checkout line all about what we’re buying that day and where we’re going next.
  • If other children show up at the playground (or anywhere else), he’ll be the one hollering, “Mommy! Look! I see kids! Hi kids!!” which will likely be followed by random introductions, “Hi friends, these are my Mommy, Daddy, and my Charly”. If your eyes are watering because it’s so heartbreakingly adorable and unaffected and innocent and authentic, then you’ll know it’s him.
  • When you’re at the theatre, if you hear a laugh during the funny parts that rises above the rest – louder and longer, and entirely infectious – that’s him.
  • If you happen to be in my house at 7am sharp, look for the little guy climbing up the stairs and into my bed, melting into my arms and cuddling silently for exactly 10 minutes before saying good morning and requesting a pancake  (I so often wish I could press pause at 7:05 am…those are absolutely the most perfect 10 minutes of my day, everyday, without fail).

There are lots of other times that aren’t so easy – especially when the world gets a little too loud, or fast, or there are too many words and questions (questions are particularly hard)…or when things are unexpected…those times are tough for Daniel, and I don’t want to diminish the challenges. There is a reason why  3 different doctors agreed on the diagnosis, and why he works (so hard) with his amazing teachers and therapists every day to help learn new ways to cope with – and overcome – those challenges.

So now you know a bit more about my Daniel, who happens to have autism (among other traits)… the most authentic, gorgeous little soul you’ll ever meet. And hopefully you are a little closer to understanding that just because someone communicates and processes the world differently from what is “typical”, it certainly doesn’t make them any less intelligent, or important, or capable, or loveable than the next guy. In fact, in many cases, it’s quite the opposite.

And now for the apology. And this part is for Daniel.

I am so, so, so, sorry that I spent so many years wishing away this thing called autism. I am so so sorry that I didn’t understand that the things that would make you so beautiful might also include you seeing and interacting with the world a little differently from me. And I’m so, so sorry that I let a word – just a word – drive so much fear into me that I was unable to see that it might actually be helpful to you, my darling boy and the littlest love of my life.

So today, as you turn five, I want to celebrate your amazing, gorgeously authentic, beautiful self, and I want to tell the world how lucky we are to have you, exactly the way you are. I know you have so much to teach me and the world, and I also know you’ll continue to show us all how little we really know.

Happy, happy, birthday my brilliant boy.

**I need to caveat this post by saying that there is a vast spectrum of traits and behaviors that fall under the term Autism Spectrum Diagnosis (ASD), and I  speak only as a mother of a one child who happens to be at the “high functioning” end of that spectrum.  I realize that our experience is vastly different from many other families with ASD. I also believe that in a world where approximately 2/100 kids will receive a diagnosis, it’s important for there to be a greater degree of understanding of the large number of children like Daniel that don’t fit the typical media stereotypes of severely affected, rainman savant, or Aspergers genius (none of which describe D at all). As they say, if you’ve met one child with autism, you’ve met ONE child with autism . (with thanks to Deceivingly Normal for explaining it so much better than I ever could).

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4 Responses to "Happy birthday to my amazing, affectionate, bright and beautiful Daniel…with an apology."

I loved reading this, so similar to my own story. It can be so comforting to know others “get it” when so many people out there don’t. Your son is a lucky little dude.

I just realized I never responded to this! Thank you – for your comment, and for your blog. I love reading your posts 🙂

I also have a very loving son with autism. Well qwicky ways as I say, an would not change him, autism makes him who he is, everyday I learn with him as it is a learning curve for us both, an look forward to learning at lot more about his qwicky ways. Think were very lucky to have are boys xx

Agreed Beverly – I think we are so lucky too!

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