Not quite “normal” – accepting the diagnosis

My son was evaluated when he was a little over 4 years old, after a few references from his daycare about something being a little “different” with him. DS falls into what many would call the “quirky” part of the spectrum. At home, he wasn’t symptomatic in a way that we recognized. He was talking around 12 months (one of his first words was “sample” – yes, we did go to Costco a lot). Eye contact wasn’t an issue with us. He plays. He LOVES people – our neighborhood knows our son better than his parents (“Oh, you must be DS’s dad!”). I worked from home, and we had a part-time sitter who was fantastic – they played, laughed, interacted – no warning bells there. Around 3 years old, we started daycare part time. He potty trained easily – I hadn’t pushed it (I was intimidated by the process, frankly) – and when the daycare teacher for the 2-3 year olds trained US, it worked!

DS moved up to the 3-4 year olds, and in about 6-9 months, the manager mentioned getting him evaluated. “He could be just a bit behind, just a boy, just quirky, but…”, “it’s covered by the school district”, “why not have it done, just to be sure”. I didn’t jump to have him evaluated right away, but when they brought it up again several months later, I figured yeah, why not. Just to be safe. The thing is, it’s in the family. Not sure about my side as my family isn’t that big, but there are some cousins on my husband’s side who HAVE been diagnosed on various parts the spectrum, an older uncle who hasn’t been diagnosed (but I would be surprised if he weren’t on the spectrum as well). You get the picture. So really, deep down, I wasn’t surprised – maybe a little yes, but the odds were pretty strong that something might be going on.

I couldn’t watch much of the diagnostic assessment as I was filling out lots of paperwork, but I caught part of it – just a glimpse of the “eye contact thing”. I’m glad I did, because then I SAW it – the difference, the “quirk”, the “not quite normal” that was going on for others. I’ve been told that this is common – that where autism is mild-to-moderate the kids often are more symptomatic in different environments than others. At home, DS knows what to expect. Also, I know my kiddo – I try to understand where he’s coming from.

I was lucky to find Love and Logic parenting books, which supported my desire to parent from a place that respected my kids feelings (and made me feel better about being a non-autocratic parent), and I don’t mean being a push-over. I parent pretty well. I’m not perfect, and neither is my kid, but I will look at his behavior when it’s off to see if it’s bratty vs. something “more”. I’ll look at what I’m asking for and how I’m asking for it, and if I screw up, I apologize. Why? Well – I remember my own childhood so I work hard not to repeat it.

As a kid I remember being told how I did or didn’t feel; I remember my mother dragged her butt to get me to the doctor for a spraigned ankle and the bruising was so bad that he thought it was broken; I remember one of my molars falling apart piece by piece (but I don’t remember pain) until finally getting to the dentist; I remember taking myself to an orthopedist in my college town for torn cartiledge in my knee because no one listened when I told them I was in pain over winter break. I remember something “bad” happening when I was a tween, and not really dating because of it, not dating successfully because of it, and nothing being done about it even when those who should have done something “thought something wasn’t quite right but didn’t want to say anything in case they were wrong”.

My childhood wasn’t horrific by any stretch, but it was “not quite normal”. I grew up the only voracious reader/deep thinker in a somewhat superficial family – within my own family unit I was “not quite normal”. I completed two grades in 1 year and maintained an A-B average throughout my school career – among my peers I was “not quite normal”. I’ve always been socially naive and “not quite normal”. I’m a girl geek, which – at least when I was growing up – was “not quite normal”.

So when we got the diagnosis I didn’t freak out. I didn’t go through the stages of grief, because I was used to “not quite normal” and my sweet boy’s autism falls into that space. Temple Grandin’s willingness to share her journey helped a lot – though I had seen Rain Man as a kid, I saw Temple as an adult. Here was someone who was, well, OBVIOUSLY quirky – definitely “not quite normal”. Her life wasn’t easy, she never quite “fit”, but she made a place for herself – she found people who “got” her and worked with the “not quite normal”. Because of her, I know it’s possible for my son to find his place as he grows up, that his place will be uniquely his, and that others will be better for knowing him if they give themselves (and him) a chance.

“Not quite normal” is our normal. And that’s OK.


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