Today is December 4, 2011. It’s just a Sunday, not a particularly magical Sunday, but a Sunday nonetheless. It is exactly two months from the day that Gia was diagnosed with an Autistic Disorder. I thought of other crafty ways to say that, but it never turned out the way I wanted. I typed the sentence(s) and then delete-delete-delete, and then typed another. I gave up. Nothing poetic. No segue from witty thought to a topic that tears my heart out, most days.
Most days, I cry.
The other days? Honestly, on the other days, where I am not sobbing-in-my-car-alone-like-a-not-so-hot-mess, I wonder what the fuck I’m doing. I’m angry for her, and unsure of who I should direct my shitty disposition to. I remember feeling like this when I found out that she was blind. I remember feeling like this when the doctor said she would need a growth hormone injection, nightly. At this point in time, I am heartbroken. Pissed and heartbroken. Eventually, I will stumble across these words and realize that this was just a phase, and that I tackled this diagnosis like the others, and kicked its ass, on her behalf. I will be her advocate, there’s no questioning that, but right now I'm sad. Don't confuse that with pity, because there is no pity here. Most parents want what is best for their children, and in those wants come the desire to have good health and the least amount of obstacles in their future. Right? RIGHT??
This isn’t a phase. That’s the part that I’m having a hard time with. For some reason, it was easier to be content with thinking that her behaviors were phases in her development and not actual issues. Actually, I was pretty content with the possibility of Autism. Once there was a hint of the A-word, it served as a point of relief for certain otherwise-unexplainable behaviors. If my family and I could imagine that Autism was the cause of a lot of issues, then the actual tantrums/hand flapping/incessant jumping/etc. became easier to deal with. Okay, not easier, but more ….understandable. Does that make sense? It isn’t a phase, however, and the realization that these behaviors are here for a while - - - are overwhelming.
Now that we have the diagnosis, I find myself struggling to believe it’s real or accurate. I feel like the 482,196 questions I answered were wrong somehow or I overestimated things. I question its validity daily. She has been evaluated by several people who each say the same thing, and I still can’t believe it sometimes. G and I had a meeting the other day with 4 million people from her school (well, it felt like 4 million). The whole group was there, all nine of them. They each took turns pointing out her skills and weaknesses and intended goals. They showed me, in years, where her current abilities reside. If you’ve never had your child picked apart and described to you, even in the most gentle way, by a group of educational professionals, then you may not know what I’m talking about when I say that it sucks. Yes, there is my very most grown up phrase. It suck-suck-sucky-suck-SUCKS, and it is one of the most difficult parts of being a parent.
I began parenting classes last week. The first class was extremely hard, because we all had to share our stories. Talking about G’s vision or the other things that make up who she is comes easily, but if you expect me to explain anything about her daily habits, or what I want for her future – you’re out of your mind. I cried like a baby. There I sat, in a room full of parents who had kids with echolalia, strange attachments to unusual objects, and the inability to create spontaneous speech consistent with kids in a close proximity age group. Story after story, parents spoke of situations and behaviors that we see every day in our home. Not a single person tried to make another feel crazy for being concerned about a specific behavior. Not one person pacified the other. We were in a room full of people who understood that their kids’ milk drinking obsession was akin to my child’s tendency to carry a chapstick in her hands for as long as I'll let her. The second class was better, because during the moments in between exercises, I was able to share my frustrations with other parents at my table. We laughed about the things our children had done, because what else can you do? I've talked to several parents of children who are blind, and we have our own connections and camaraderie but not like this. Sitting across the table from the faces of parents who look as tired as me, and have stories similar to mine, I can see how important it is to have this contact.
Gia is sitting on the floor asking "what's that?" repeatedly, while she flips through flash cards. She holds them to her eyeball and I have no clue how she sees any of it with the tiny vision she does have. She's hitting the bed and semi-yelling "nooooOOOooOOoooooooo," with every word I sing out loud, as I type.
We're trying to figure this out. We're trying to find the right rules, actions and behavior. We're trying not to lose our shit. Well, I'm trying not to lose my shit.