It’s here. Tomorrow we take Zoey to be formally evaluated for all the myriad sensory issues we have been noticing and questioning since she was six months old.
The evaluation is being done at the Children’s Hospital Autism Center.
I know that doesn’t mean she has autism. It’s just…the Autism Center. I took all the strength I had not to break down crying on the phone with the poor gentleman scheduling our appointment. He was amazing by the way. So helpful, so calm. Explaining all our options and what to expect. We had only gotten our referral from Zoey’s primary care physician a couple of weeks ago, and we were on the wait list for an appointment. I asked what the wait time was and was told “eight to ten months.”
Eight to ten months. This is horrifying to me. So many other families going through this struggle. So many others wondering and questioning. So many others who already have a diagnosis and all the weight that comes with it.
This amazing young gentleman must have picked up on how I was barely holding it together. He had explained to me that Zoey’s evaluation could be done in the neurology clinic or the occupational therapy department. They deal with sensory issues too. The thing is, even though we’re 90% sure Zoey does not have autism, there is still that small chance. That possibility that she is somewhere on the spectrum. And, well, The Autism Center is the place to go if you want the best experts, the people with the most experience and knowledge about a whole lot of sensory and autism spectrum disorders. So he looked at the schedule and told me there had been a cancellation on Tuesday and we could have the spot if I wanted it.
The thing is, I was doing ok with the idea that Zoey was going to be evaluated. I knew it was coming. Had even proactively sought this. However, I always thought of it happening in an occupational therapy setting. When you schedule an appointment for your three year old at The Autism Center it all just kind of hits you like a load of bricks, no matter how sure you are the she “isn’t on the spectrum.”
I’m nervous and anxious and worried. I worry that we’ll take her in there and they’ll say “We can’t believe you put your child and us through this. She’s fine. There is nothing different or “quirky” at all about your kid. What are you thinking lady? Chill out!” What if it is all in my head? What if all the “things” I’ve been adding up over the last two and a half years really are just “normal toddler behavior.” What if all my mom instincts, which I rely on so heavily, are dead wrong?
I’m worried that they’ll say I’m right. More than that, I’m worried they’ll say, “It’s a good thing you brought her to us. This isn’t just sensory. This is spectrum. This is Autism.” It’s not that I doubt my ability to parent an autistic child. I don’t doubt for a moment the ability of an autistic person to live a fulfilling, meaningful, important life. It’s just that, well, it’s autism. This is a battle I hope my daughter does not have to fight for the rest of her life.
Perhaps they will say that it is Sensory Processing Disorder/Sensory Integration Disorder (SPD/SID). Honestly, I think that’s the most likely place we will end up. It still worries me though. Am I selfishly hoping for that diagnosis simply so I can say, “See? I was right.” Do I really want my child branded, labeled, diagnosed for the rest of her life? On the other hand, there clearly is something going on there. Something liveable, overcome-able, deal-with-able, but still something. Something Zoey has to fight against on a frequent basis, something she doesn’t have the ability to explain to us.
So tomorrow we find out. Wish us luck.