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Autism: The Musical

It is crazy how one seemingly simple decision can change your entire life.
 

A Saturday in May of this year I sat on my couch bored. Rickey was at work and both of the boys were gone, a rarity, so I figured I would look up HBO Docs on demand. I love HBO documentaries!! I saw Autism: The Musical on the list and hit play.

I worked in pediatrics for years, saw a few autistic children here and there, but my experience with the disorder was quite limited. When I was 18 and just had Lyric I actually wanted to go to school to do music therapy with autistic children but it was in Orange County and that wasn’t going to work. So I stayed in San Diego and went into nursing.

Anyway the point of that rambling was that I really had no clue about how wide the autism spectrum was.

Back to biz…I hit play, and after about 20 min my heart went to my stomach, I sat there and thought Oh my God, I see so much of Diego in these children!Could he be autistic…no…no way….but wait….maybe??

I watched the rest of the documentary and when it was over I cried, alone, in my living room for a very long time. How could I not have seen it?? I mean I always knew he was “quirky” and had/has behavior issues, but really?? It took a documentary on television for me to even get the idea??? Talk about Mom FAIL! I felt so awful, so guilty, like a horrible mom.

The guilt has become a constant and unwelcome companion.  One of the moms in Diego’s social skills group says I shouldn’t feel guilty because Diego is verbal, and when our children can speak, it is hard to tell.

I still feel like I should have known.

I’m his MOTHER 😦

Back to that Saturday morning. I sat on the couch and finished the bulk of my crying episode, then I thought about everything from the time I got pregnant until that point. It all made so much sense now!! The noise issues, the swaddling until he was nearly a year old, the tantrums, the slight delay in speech (which we all attributed to dual language), the rigidity, the way he played (or didn’t), his allergies, his stomach issues. I sat there numb with fear and disappointment for a few hours. Once I was able to get up I went to the computer and started my research. The boys had their physical coming up and I wanted to be armed with as much knowledge as possible when I presented this to our pediatrician.

When I approached our pediatrician in her office with it, she had her aha! moment, because of Diego’s father’s insurance Diego had not been her patient the first year and a half of his life (she has been Lyric’s pediatrician since Lyric was two weeks old.), so I don’t blame her for not catching the signs, hell I lived with him everyday and didn’t know!! The doctor and I went over my list and she said it was very concerning for Asperger’s Syndrome.

Confirmation of my worries=heart back in stomach.

Our journey since then is pretty well documented in this blog.

I am very thankful to Coach Elaine, Wyatt, Adam, Henry, Neal, Lexi, their families, and the crew for making this documentary. It is beautifully made and very real, but more than anything it opened my eyes to what was happening with my baby. For that I am forever grateful.

http://www.autismthemusical.com/index.php?session=myhomepage&id=

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About sonidoinquieto

I hate writing bios *bio pending*

3 responses »

  1. Don’t beat yourself up about it not noticing sooner. My oldest daughter was 6 before we had an inkling she was on the spectrum. She is gifted and had used her intelligence to help her blend and fit in with the world around her.

    Her younger sister was diagnosed on the spectrum at 2.5yo, so we had one child on the spectrum, several therapists involved in our lives and it never clicked for me that our oldest was also on the spectrum.

    In fact it was not until Annie started school full time that her behaviour started to change significantly, we started seeing a counselor who referred us to a psychologist. We got speech and OT assessments and finally got a diagnosis of Aspergers.

    Now I look back and wonder how I could have missed the obvious!

    A smart friend told me to stop spending so much time looking back and beating myself up because I needed to look forward and enjoy the now instead. So that is what we do. 🙂

    Reply
  2. I wouldn’t be too hard on yourself. I knew something was wrong with Jonathan but had a hard time getting anyone to listen for a long time. In the end, it always comes back to God’s perfect timing.

    Reply
  3. As soon as the herd goes to bed, I’ll watch the link. however…i hear you! I’m a peds nurse with over 15 years experience in a practice specializing in kiddos with learning disorders. I remember watching my two-yr-old and absent mindedly thinking “he’s autistic”. Didn’t do anything about it until he hit school 6 months ago. DENIAL is not just a river in Egypt.

    YOU are NOT alone.

    Love ya.

    Reply

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