Wednesday, 10 August 2016

Diagnosis and Disability

I was so excited when I finally got the call setting up the appointments with the child psychologist. It was a huge relief and yet I was nervous. It was relieving, because finally, finally, it felt like we were getting somewhere. I was nervous, though, because.. what if it was something serious? What if it wasn't?? What if it was something I had done or not done, even though I thought I had done everything I could? What if.. it was all my fault? 

In May, we went for the first of two appointments. This one was an observation/interview appointment. The doctor, and his student intern (I don't mind students -- I let the local universities use my children for their studies frequently.) sat and watched my daughter play, while they asked me questions about her history and the testing and therapy we had done up to this point. I tried to be detailed, but without bias. I have and had my personal opinions on what my daughter's challenges were, but I did want the psychologist to give her his complete attention. I didn't want to "lead" him in any direction. After all, he was the expert on child development, not me. 

The second appointment was a couple of weeks later, and took all afternoon. They asked my daughter to do several tasks, and answer questions, and solve problems. Some were timed, some were not. The intern did the actual testing, while the psychologist observed from a different room. He was observing both my daughter and his student, so I'm sure he had a lot to pay attention to.  My baby girl squirmed and rocked her way through the tests, reaching for my hand and her security toy frequently, but without melt down. I was so proud of her trying so hard, and doing so much work that was really challenging for her. 

Then came the wait. 

We waited over a month before we heard from them again. It was anxiety-inducing and agonizing. But finally, they called us back. They had some questions about the testing they had done, and wanted to do some more testing. But to save us a trip (it was an hour one-way just to get to the centre where all the specialists were), they offered to do the testing in the morning, and give us feedback on everything that same afternoon. It 

I arranged childcare for the day for my other children, and off we went. First, we did the testing. It was more of the same like before, only this time it was more academic in nature. I found it eye-opening for my future education plans for my daughter, so in that sense, it was really helpful for me personally. 

Then came the afternoon appointment. The psychologist pulled out a chart with a hundred little stick figures on it, arranged in a bell curve of sorts, divided by lines. The bulk of the figures were in between the lines marked 25 and 75. The doctor explained that this was a representation of typical abilities. If we compared 100 children aged 8, the majority would fall in that bulk in the middle. Those who had advanced abilities would be on the far end of the curve, and be considered gifted. Those who were delayed were on the other end. 

Then he pointed to the lowest end of the curve. Figures 2-4. This was, he said, where my daughter's development was. If we compared her to 100 other children her age, 96-98 of them would be ahead of her. Only one or two would be behind her, or the same as her.  

The testing showed that she had difficulties with short term memory access and processing information. She also had challenges understanding language. (No, really??) Her comprehension of language was so low, it was actually not even on their charts. He said to compare, we'd have to compare to 1000 children, not 100. 

Because of all of this, he said he was diagnosing her with an intellectual disability.  It was mild, yes, because she was still on the charts, even if only in the 2nd percentile, but it was a definite disability. 

Mild intellectual disability.  I had to let that sink in a bit. 

An intellectual disability means that this was how she was born. It explained a lot, but it also meant a lot of adjustment of how I thought of her.. of her future. An intellectual disability isn't a learning disability. You don't change your IQ.  If it was a learning disability, we could teach her coping strategies, give her tools, use different ways of teaching, and she would "catch up", once we identified those. But an intellectual disability meant .. no catching up. 

Having an intellectual disability means forever being vulnerable. There's a reason we call it a disability. It doesn't mean that she can't learn.. it just means that there will forever be a gap between her and her peers. It doesn't mean that we stop teaching her, but it does mean that there needs to be a greater priority on practical things as opposed to academic things. It's not that there's a ceiling on what she's capable of, but more.. a time limit. There's only so much time until she's supposed to be independent, and she learns only so fast. But that's the same with all children. This one just takes a little more time than what's typical. 

Intellectual disability changes everything, but it changes nothing. It changes how I do things, but not how I feel about my daughter. It changes my expectations, but not my standards. It changes how I will prepare for her future, but it doesn't change the fact that she will have a future. 

Because God still has a plan for her. 

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