Saturday, April 18, 2009

Our story part 5: Thoughts on Bearhug & Cuddlebug’s diagnosis

I should pause here to share some of my thoughts on the diagnosis of our twins. While it was a bit unnerving to actually hear a professional say the words, it was an enormous relief to finally have an explanation. I wrote a little about it (metaphorically) here.

It really was like having someone hand me a flashlight after I’d been wandering and stumbling in the dark for a very long time. It was the end of a long and confusing journey of looking for answers in all the wrong places. Before the diagnosis, I had thought that their speech would eventually catch up, but I had spent countless hours reading so-called “parenting experts” for help on how to handle the meltdowns. Unfortunately, their suggestions were such epic failures for us I decided they must be dismally out of touch. I got to be pretty cynical of anyone’s parenting advice. I wondered if I was a horrible parent, or if my kids were just different. Then I wondered if I was a horrible parent for wondering if my kids were different…

I share this to give you a sense of my frame of mind at the time. I was deeply saddened when I was told that autism is a lifelong disability with no known cure. The thought of what we had ahead of us, not knowing which therapies they might respond to or how long it might take to see progress was overwhelming. But I also felt gratitude. I was grateful to finally have an ANSWER. I was relieved that it was not a life-threatening condition, and that although there is no known cure, there are therapies available and I was optimistic that those would be helpful.

I started reading autism parenting books, and it was such a difference from reading the other parenting books. Instead of thinking, “what PLANET are these people living on?!” as I read, I kept thinking, “Wow, that is EXACTLY what my boys do!” I sought out autism moms online. It was amazing to read their experiences. For the first time in a long time, I no longer felt so alone in my experiences.

At the same time though, with increased knowledge came a lot of guilt, particularly as I learned about sensory issues. All that time I’d had no idea what my kids were dealing with on a daily basis. No wonder they got so frustrated!

And so we began our journey to learn all we could about autism & sensory integration disorder, to see our boys’ behavior through a lens of new understanding, and to start figuring out how to help them overcome their challenges and achieve their potential. We finally had some idea of what direction we should be going and could stop wandering in aimless circles looking for answers.

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K on April 19, 2009 at 1:11 AM said...

I too have a whole pile of parenting books that really are no use
Happy child on the block or something like that type books
With sensory issues really how much can ( and should ) discipline or routines do ??

Julie on April 20, 2009 at 7:33 PM said...

Thank you for continuing to share your story with us.


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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.


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