Happy Autism Awareness Month

What's more frustrating, exasperating and tiring than a willful, headstrong, intense, oppositional, contrary, defiant, easily frustrated 3 1/2 year old girl who wants Mommy's attention but also wants to be completely independent? Well, a generous touch of autism really brings the party. It's hard to separate her personality from the autism sometimes but from what I can tell, and knowing what I know about her genetics, this would have been a toughie anyway--without the autism.

She tends to do things to the extreme, which I think is part HER and part autism. For instance, her chronic, persistent, oppositional, contrary, defiance. When put on a typically developing child at this age, I doubt many of them would have the endurance to maintain such a nasty attitude during nearly every waking moment. I cannot say anything without a major issue over what I have said. And the issue usually relates to her communication disorders.

Examples:
I said: "Go ahead."
She said: "NO!!!!! No go head! Go HAIR!!!!!!!"

(That's the language disorder talking. She has a very difficult time understanding what I say. Sometimes she just hears the word wrong, like lobster/monster, or sometimes it's because the word or phrase is a homophone or a figure of speech. Communication with her has to be extremely concrete.)

I said: "It's going to snow tomorrow."
She said: "NO!!!! No 'marrow! NEXT TIME!!!!"

And then if I forget and call her by her real name, that's when we really have trouble. She FLIPS out if she hears her real name. She assumes names for herself throughout the day, usually based on something she has seen or played with or a person at school. It's really embarrassing when she insists to be called "Eric" or "Domonick," after boys at school. And even more embarrassing when she goes BERZERK on classmates and the parents of classmates when they greet her and use her name. The parents look at me like it's all my fault, and the poor little kids don't understand and are afraid of this shrieking, wild monster who they thought was their friend. She takes the name thing so seriously that she has night terrors--wakes up screaming about not wanting to be called by her name, and screaming out other names she wants to be called. I try to avoid using her name or aliases at all, so I don't encourage the behavior, yet I get in trouble when I speak to her as "you" in conversation. A perfectly pleasant (and rare) conversational exchange can be ruined in a split second once she decides that "you" means her name. Then it's just a torrent of "No!"s and screaming, and then I just walk away. That's all I can do. It's sad and awful that I cringe every time I speak to her, wondering if what I just said will set her off. I dread every day, honestly. But I just keep praying for patience and wisdom in dealing with her.

Strangely, a friend who also has a special needs child told me, "it's all about how you parent her." Though she herself should know each kid on the spectrum is different and I was surprised to hear such a thing from her. That is a parents' worst fear, to be judged on their parenting! And parents of autistic kids are especially sensitive to this. Some special needs children just can't be "parented" in the way she means. In our situation, however, what I CAN do is work very hard to make sure we find all the services and therapies and experiences she needs to progress and succeed. Parents of typically developing children need to focus on "parenting" but I'd say that parents of many types special needs children should focus on "advocating."

This being Autism Awareness month, I think of parents of children who are lower functioning and am grateful we have the skills that we do.