Today, I made Holland an appointment with our family doctor, as she’s been very grumpy for the last while, and it’s clear it’s not just teething. (It’s a possible bladder infection, but that’s another conversation and a pediatric urine collection bag type of story.)
While there, I mentioned to Dr. D that Noel had been diagnosed with Asperger’s. He wrinkled up his nose, chuckled and shook his head. “I don’t buy that.”
Some backstory: When I went to Dr. D for help with what was an increasingly disruptive behaviour problem, he brushed me off, told me Noel was just very bright and that he would be fine. At that point, we made the decision to seek private evaluation services.
The problem with him feeling that way? The problem with anyone who knows us telling us that they just don’t see it/don’t believe it/but he’s so smart!!!?
Well, there are two. The first is that whenever someone says that to me, there is a little flicker in the dark, that tiny spark of hope that maybe our diagnosis is completely wrong. And I can’t live that way, the hope renews the grief whenever it sputters out.
The other problem? If there is nothing ‘wrong’ with him, then what am I doing wrong? Where have I failed at being his mother that he is so stuck on routines, so reckless with himself, so emotionally unstable? The idea that we might have made him this way breaks me down.
Kyle spent two hours today at the Autism Calgary office, speaking with the totally amazing family support workers there. When he called and told me, a little twinge of anger flared up inside of me, and I’ve been thinking all evening as to why. And I really think that it must be jealousy – jealous that he was getting support that I desperately feel I need.
This week, in amongst the gloom, there has been a lot of anger. And my poor husband is directly in the line of fire. But I just feel like in order to keep going at all, I have to feel indignant about this particular situation we’re in. Because otherwise, if I don’t get that anger that spurs me out of bed, I’m afraid nothing will.
2 Responses to “what they refuse to see is staring right at me”
I have read all of your posts and with each grew more and more convinced I know you. Wow, we have things in common. May I introduce you to my friends on my blog? I’d love to post about you and point my community in your direction. That is what someone did for me over a year ago, helping me build my support network. It helps, and can help you too.
Hi! Gayle sent me over – sounds like you are where we were 9 years ago, but you have the advantage of already getting the diagnosis. I didn’t start trying to get one for my son until he was 6, and it took almost 5 years to get one (well, to get the one that I agreed with), so there are some things worse than reading that report.
There are days that are easier – that make you think yep, everyone else is correct, there isn’t a thing wrong here, I just worry too much – and then there will be 5 to make up for it where you wonder why on earth you would even imagine that. The constant feeling of 2 steps forward, 3 steps back wears you down, but it does eventually get better. You learn to cope, he learns to cope, you meet people who become your support network – some teachers that actually ‘get’ it, a friend here and there that gives you a break – and the constant support and understanding of those of us who have travelled (and are still traveling) the same path.
One day at a time, just take it one day at a time. And give shouts when you need extra help.
Karin