One in Sixty-Eight

Olive has autism.

You know when you say the thing out loud you don’t really want to say, because if you say it out loud, it’s real?

I realize that is a ridiculous sentiment. Its real regardless of whether I say the words out loud or not.

I took Olive to the developmental pediatrician on April 12th. It took me three months to book the appointment so I should’ve been full of anticipation and nervous but I wasn’t. I don’t know if its because it was the day after her birthday and a few days before her birthday party so I just had too much going on or I honestly just didn’t think anything would come out of the appointment.

But after watching and playing with Olive for two and a half hours and talking about some of the things he’d noticed, the pediatrician said that the developmental and speech delays we’d experienced were part of a larger issue and he felt confident that she was on the spectrum. I suddenly felt like I was underwater, hearing everything he said afterwards from a distance. Everything around me grew incredibly silent and remarkably loud all at the same time. My throat closed up and my stomach dropped as I watched her happily play dinosaurs and crash cars as if everything were just the same. Because it wasn’t her world that was just turned upside down, it was mine.

I had to ask him to repeat everything he said at least four times. He said that although it’s an early diagnosis, he thought she was probably High Functioning (HFA) and the form of treatment would be fifteen hours a week of intensive early intervention therapy in the form of Applied Behavioral Analysis (ABA). Kids that receive this therapy before the age of five have the best prognosis, but in terms of the “big picture” he couldn’t say what her life would be like. A lot would depend on how she responded to therapy. Come back for a follow up appointment in six months.

I spent a lot of time over the next week being confused, sad, and angry. I’ve spent a lot of time talking with other people who have children or relatives on the spectrum as well as people who work with autistic children and young adults. They said that its normal to go through a “grieving process” with this diagnosis for the life you thought your child would have. The hardest part is not knowing what this diagnosis will mean for her life. Will she be able to have a career? A marriage? A mortgage? Adult (Frankly, I question this in myself on a daily basis)? At this point, we just don’t know. I know Olive will have the life she wants to lead, whatever life that may look like. Because we will do everything it takes to give her the tools to carve the life she wants for herself. Just like any other parent without a child on the spectrum.

Part of what bothered me initially with this diagnosis is that it felt that the very things that I loved about my daughter: her quirkiness, her mannerisms, her love of building, the way she repeats phrases in answer to a  question, the way she crashes her cars and knocks down block towers, her love of spinning, her haphazard way of walking and running, basically all the things that I felt made her unique and beautiful were now symptoms of a disorder. I’ve had to spend a lot of time since April 12th reminding this part of myself that my daughter is that same little girl she was on April 11th and every day before it. No diagnosis will change her or define her.

Since I’m not one to NOT share, I’ve of course been fairly open about our experiences the last month and our journey in general with her evaluations and therapy treatments for developmental delays with family, friends, and acquaintances. I will continue to share this journey through my blog because I want to help any one I can if possible and frankly, it is cathartic for me as I process everything I learn on this very new road we are on. I will also share what I try to advise any one that has questions about how and why we sought out a pediatric developmental evaluation to begin with and what to look for. If you think for any reason, that something is “not right” or “off,” speak up. You are always your child’s best advocate. It’s always best to get treatment early than to spend time secretly wondering if there is something bigger going on apart from a quirky toddler who is very strong willed. Who just happens to be very good at building towers and lining up trains. Who knows ALL of their alphabet, numbers, colors and shapes but couldn’t tell you without six months of speech therapy at the age of two. There’s a reason why autism is a spectrum; no one child with autism looks the same or has the same symptoms. One in sixty-eight children are diagnosed with autism spectrum disorder and it is believed that one in forty-eight actually may be on the spectrum, but so many still go undiagnosed. Please don’t be afraid of autism. It has many faces and this one is my favorite.

autism2

 

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