Proud Autism Mom

Today was the day. The day we saw the paediatric neurologist. First things first… A friend asked how I felt about it deemed that there is no need for a brain scan.

Relief! I didn’t think we needed one so didn’t rush. The neuropsychologist who had been the first official ‘diagnosis confirmer’ had wondered if we didn’t need one seeing as she had the regression that sent us there. When our son’s original neurologist said she no longer sees autistic patients, the psychologist has even wanted to phone her and impress upon her the urgency and see if she would not budge just for us. But with the way our girl knows her colours, numbers and some letters and most animals and doesn’t show any other worrying symptoms, I didn’t think it was the serious so I waited. December till today, June 1.

The gamble paid off.

My angel is still extremely, obviously autistic. You can’t miss it. I felt like I’d come home. A boy in the waiting room was running up and down the corridor and when his dad came out briefly, the boy took off out the door and had to be called back in and given a cellphone to play with. Ahh, the joys of runners!

My girl wanted to leave as soon as we arrived. She kept pulling me out to the door. Then she wanted to go behind the receptionists’ desk. It was..interesting waiting!

How was the appointment itself?

Well, she didn’t prove me paranoid, that’s for sure. She played exactly as we told the neurologist she does-piling things on top of each other. She sang. She didn’t miraculously suddenly talk to us or show us anything she was playing with.

I didn’t like hearing the term “low functioning.” Nor did I feel excited about knowing that it can become more ‘severe’ for lack of another way of explaining it to newbies. But there’s also hope that she can one day speak. If not, type. But it all depends on her intelligence. And right now, we can’t tell where her IQ lies. Just like the neuropsychologist said, “The autism traits are all encompassing.” You can’t tell what she knows because the autism has made her non speaking. You don’t know if she knows what she wants because she doesn’t really want much. Just to eat, and walk outside. You won’t be able to see success in learning new skills to overcome the deficits autism might bring if she has a global developmental delay and won’t be able to learn even normal functioning.

Which is where we are with my six year old. His delay is deeper than his being autistic. It stands out more, and is harder to ‘overcome.’ Can YOU teach a two year old to act like a ten year old? To analyse their behaviour and reason like one? That’s the problem…

She’s too young to learn alternative ways of communicating-picture boards etc. And she’s not interested in signing anymore. She doesn’t look when I’m signing anymore nor has she signed in months.

It is what it is.

And sometimes, it’s sad.

I want to know how she’s feeling. I want to know what she’s thinking. When she wants something, I want to know what it is. I want to know she understands when I tell her I love her. I know she understands “move back.” But does she understand how much I love her and enjoy it when she sits on me?

I’ll see what recommendations the neurologist sends through when she’s finished compiling her report. She did say she wants to see her every six months.

I know I won’t use anything that forces eye contact or ‘normal’ behaviour on people who are not comfortable performing the wanted behaviour. She mentioned a boy who she could tell had been ‘trained’ that he must go to people upon meeting them and shake their hands. It wasn’t natural to him. (Sounds like he did it robotically.) For her, the fact that he did it was important. Whether he has sensory issues that make touch painful to him, or whether he is doing it so that he is deemed as acceptable by those judging his behaviour was immaterial to her. Kinda like making someone whose amputated legs are sore, use their prosthetic legs when at that moment, they just need their wheelchair to give their stumps a break. Would you force them to walk on those painful stumps just so they fit in with the rest of society? Or would you accept them either crawling or in their wheelchair, just as they are?

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