Today is Thursday, today Ryan is at daycare and I am working on her new kitchen, laundry, and appointment schedule. I love Thursday’s, but this week gave me yet another reason to hate Monday’s.
On Monday we met with a Developmental Pediatrician. We met with her to discuss Ryan (of course), to discuss Ryan post op, and her developmental progress. These meetings are painless yet gut wrenching. Ryan runs around playing, being assessed by an OT, a PT, a Speech Path, two Residents, and the Doctor.
Micah and I sit in two chairs against a wall, we are asked a barrage of questions, but asked not to interrupt Ryan while they assess her. They go over all of the forms that I’ve already filled out, her history, her first surgery, her second surgery, her third surgery, her fourth, etc.., etc.. and then we discuss her brain surgery.
What did I expect from this meeting? The truth is that my biggest fear is that they would determine that Ryan is Autistic. Another diagnosis, a diagnosis that I had convinced myself I actually wanted. A few months ago thinking that she was Autistic had me in tears, but now that I know how insurance works (and doesn’t work). An Autism Spectrum Disorder diagnosis would mean that Ryan could try ABA therapy on Insurance’s dime, additionally they’d pay her bills without all of the questioning and appeals, an ASD diagnosis I’d convinced myself wouldn’t be so bad. Ryan is how she is, so those words wouldn’t change her, she is how she is.
They didn’t tell us that she was on the spectrum, they told us that she is developmentally between six months and a year, they told us that she is developmentally too young to assess for Autism. They told us that she should be progressing more at this point, that all of the extra therapies we are taking her too may be overkill, because she does not understand. Cognitively we should expect little improvement, that she may cognitively be six months to a year for the rest of her life. For the rest of her life, as she is now, for the rest of her life.
She told us to enjoy her and to continue with her EI therapies, and that ABA therapy would not help Ryan much. Sure she might learn how to do a few things sooner, but she likely will not get much out of it. For the rest of her life as she is right now.
This Doctor, who tried to steal my HOPE, also told me that she never took care of a child who’d had a cortical resection before. How dare she, how dare she, why did I let her, why do I continue to let these jerks steal my HOPE for Ryan.
I want a crystal ball, I want someone to see my girl that way that I see her, not on paper, but in real life. I want them to see her climbing on a chair to get to the end table, to reach up on to the box that sits atop it and hold my soda. My daily fast food soda that Ryan is never allowed to have a sip of, but she sees a cup with a straw in it and knows that it’s a drink and she wants it, so she figured out how to get to it.
Ryan is two and a half years old, three months out of brain surgery and this Developmental Pediatrician thinks that this is it. That is my biggest fear. Here is a snapshot of daily life with Ryan, and why I think she made this determination.
She wakes up, she starts babbling, I go in and get her. I smile and say good morning, perhaps sing her a song. I say, uppy, uppy, uppy a few times and put my arms out. Ryan sits in her crib and mouths her Doc. McStuffins doll. She might stand up and she might eventually put her arms out for “uppy”, but likely I’ll give up and just get her out.
It’s time to get dressed, I get her clothes together, she is in her room playing. I call her to come to me so I can dress her. She doesn’t turn her head. I call her name a few more times, and there is no acknowledgement. I hit her favorite toy, so that it makes a noise and perhaps she’ll turn her head in recognition, but likely not. I go get her and dress her
I pick her up from daycare and she is running around with her adorable helmet on. She sits on a bench, I sneak in and sit next to her hoping that she’ll notice me. I’m on her left side, so she should, but she doesn’t. She gets up and runs to the other side of the room. Then I start talking to her Teacher and eventually Ryan hears my voice and she comes around. But she just comes near me, not in to my arms, not with arms raised for uppy, uppy, uppy. Just nearby.
Ryan is learning, but Ryan is behind, Ryan is my heart and my heartbreak.