The waiting room is crowded and chaotic. We have hurried to get here.
Stuck in awful traffic, Brooke and I bolted out of the car, deciding it would be faster on foot. We’d left Luau and Katie to park the car and meet us inside.
We had scooted along as well as we could, trying to make a game of it. Autism and Hurry are a combustible mix.
We’d made it, only ten minutes late in the end and not too much worse for the wear. A minor victory.
And now we sit. It is obvious that we’ve entered a place without regard for time. We needn’t have run. Not by a long shot.
Luau had started filling out the forms, but I’ve taken over. I need to DO something lest the nervous energy bleed out onto my girl. So I answer question after question about my daughter.
I hate these God damned forms.
Tell us about your pregnancy.
What did you do wrong while you were pregnant with your child? What did you NOT do? What do you not even remember that you did or did not do?
Tell us about labor and delivery. What was her APGAR score?
That hour – was it two? three? I’ll never know – when her temperature was too low and I couldn’t be with her.
That awful time that my body ached for my baby and itched from the morphine – the tears streaming down my face, burning the skin that I’d already rubbed raw. They wouldn’t bring her to me. God, I just wanted my baby.
Over and over again I’ve wondered what it all meant. The morphine, the low temperature, the lost time.
Her APGAR score?
I ask Luau. He doesn’t know either.
Do better parents know such things?
Tell us about her development.
What couldn’t she do when she was a baby? A toddler? What can she STILL not do?
What delays did you not notice because you were too busy pretending that everything was fine?
When did she learn to ride a bike without training wheels?
Yes, that was actually one of the questions.
She’s eight. We haven’t come close to trying. Thanks for the reminder.
Where is she relative to her peers? We’ll give you three choices – better than, on par with, worse than.
Wow, little harsh when it’s so black and white. How about ‘not quite there but damn, you should have seen her last year!’?
Things don’t come easily for my girl. God, when it’s written out like this, it’s an awfully long list of things that she struggles with.
Tell us about your family history. All the details. Tell us everything you should have known before you had a baby.
Yes, there is an extensive history of mental illness in my family. Bipolar is big. Depression, anxiety. Check. Check.
Luau’s side is blank.
I simmer in an irrational soup of fault and blame and guilt.
I hate these God damned forms.
Does she have any medical conditions?
Interesting phrase – Medical Condition. I turn it over in my head. She has autism – a neurological disorder with attendant social, emotional and behavioral challenges.
Is that a medical condition?
One would think certainly think so. But after diagnosing her, you folks – yes, you, right here, in this very place – sent us to her school system for ‘treatment’. Is that the way one treats a child with a ‘Medical Condition?’
Yes, she does have a medical condition. I write it down.
Original diagnosis 5/ 06 Autistic Disorder, revised to PDD-NOS 6/09. I skip the attendant pervasive anxiety disorder, the coordination issues.
They’ll figure it out.
Does she receive any type of therapy / see any specialists?
Two lines ain’t gonna cut it here kids. I write as small as I can.
Speech therapy 5 x wk, OT 1 x wk, full time aide in the classroom, BCBA consult, developmental psychologist 1 x wk, developmental pediatrician 4 x yr, full neuropsychological eval 1 x yr. What am I forgetting?
Oh, not what you meant.
Celexa for anxiety. Metadate for attention. Melatonin for sleep.
What brings you here today?
It’s 2:55. Our appointment was nearly an hour ago. Brooke has her hands pressed against the window, looking out at the city below. She’s running through a script from Elmo. “Are you two OK? Yes, we’re fine, thank you.” It’s the one where there’s a fire in Mr Hooper’s store. I kiss the top of her head. She leans into me and launches into her signature squealy hum.
I can no longer move my right hand, so I hand the papers back to Luau and he finishes writing.
Concern regarding episodes in which her eyes roll up to the ceiling. Possibility of seizure activity. Following up on EEG upon reco of pediatrician.
Luau and Katie head down to the lobby to grab a snack. The doctor finally calls us in.
He’s a doughy resident with a round, pimply face. He doesn’t look comfortable. He says nothing about the fact that it is 3:10 and our appointment was at 2:00. He doesn’t look at the stack of papers in his hand.
“So when did you first notice this happening?”
“Well, we started to see it on Sunday. It’s hard to say how much it was happening. As we don’t really get to see her head-on as much as one would with a typical child .. ”
He interrupts me. “What do you mean?” He looks genuinely confused.
Now I’m confused. “What do you mean, what do I mean?”
He actually says, “Why don’t you see her head-on?”
I take a breath. “Because a child with autism tends to avoid eye contact …”
He looks at her. She’s pulling his antiseptic wipes from the container, one by one. He looks at me. He looks at the stack of papers in his hands. “She has autism?”
No one has looked at the paperwork.
“Yes, she has autism.”
We start over.
I want to throw up.