A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Friday, August 29, 2014

My Daughter Was Diagnosed With Autism (6 years ago)

Six years ago today my daughter was diagnosed with Autism. She was 3 1/2 years old and had been in therapies since she was 8 months old because (presumably) her low tone delayed her gross motor, fine motor, and speech and language skills. Until that day, her only diagnoses were hypotonia and developmental delay. All those therapists that she'd seen over the years were so surprised that I was going to get an Autism evaluation and at every therapy evaluation when they'd say it doesn't look like Autism, I'd ignorantly think to myself, "at least it's not Autism." But, on August 29, 2008 it was. She was diagnosed by one of the leading names in ASD diagnostics. This was it. She has Autism.

So to honor the six years since the diagnosis, here are six things I've learned along the way. This won't be true for ALL people raising kids with Autism, nor will it be true for all autistic people. These are six of MY truths.

1)  "The world is so big and she will find her where she fits." Just as I shared in the Our Story section, I sat with an older woman a few years ago and she said these words to me. I've held on to them, reminding myself that there's a place in this big world for my bird and she will find it. She will find it.

2) There are some pretty cool people here. Early on in Little Bird's life, it seemed like the world was getting smaller and smaller. I wasn't able to socialize or go to the same places as the other families because there were parts of her disability that made it impossible; there were also parts about where I was in my grief journey that made it too painful for me. I found an incredible group of parents just like me all around the country and even world. I am never alone in my feelings and I always have people to turn to. And these people get it. Like, really get it. 

3) This isn't going away. When Little Bird was a baby and I first started seeing signs that she wasn't developing typically, the doctors, therapists, and teachers all lauded Early Intervention as this amazing concept and way of life that would offer the chance of Little Bird outgrowing her symptoms. I remember they all said that if I kept at it, then by kindergarten/age five, she might be indistinguishable from her peers. That's why five was such a huge deal for me. I wrote about it here. Kindergarten came and went. She was most certainly distinguishable from her peers despite years of early intervention programming and countless hours of therapy and thousands upon thousands of dollars spent. The inverse seemed to come true and now as more time passes, the chasm between Little Bird and her peers widens.

4) It's not a death sentence. Yes, it's a lifelong disability and there is no cure, but there is still happiness, fun, and love here. There are ways to try to minimize some symptoms that might hinder a person's ability to enjoy life, feel comfortable, and thrive. Therapies, medications, supplements, etc. It is possible to find happiness whether your child's symptoms improve or not.

5) There are neurotypical peers out there who want- actually want- to be Little Bird's friend. This one I need to keep reminding myself. While it's been more than a year since any play date or birthday invitations have arrived, there are children who approach her with a smile and say hi as she walks through the school halls. 

6) Autism is fluid. Symptoms come and go, flare up and calm down. Just when I think I can't take one more moment of a particular behavior, another pops up to replace that one- sometimes this works in my favor; sometimes it does not. Life with Autism is never boring and always changing. Little Bird's behavior and functioning can be very variable depending on the situation, scene, and her comfort level. I always try to meet her where she is, but presume competence and push push push her to be the best Little Bird she can be.

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