My boy! Simple as! Before him all I knew was rocking kids and Rainman. I feel like I could read about it everyday and I’d learn something new. My husband laments that I don’t read anything else now. He reads the lastest novel and wants to discuss with me all the exciting happenings-I loved the series before but yet it remains unread from chapter 2 on my bedside table as I hunt out more autism related information instead….
My baby was just a difficult baby. Everyone told me that. All babies cry incessantly if their mum’s stressed. All toddlers want their mum constantly if you always give into them. Most preschoolers play by themselves. “Stop wishing his childhood away” everyone reassured me. School age kids have tantrums when their parents don’t show them who’s boss. Blah blah blah….We’d had him tested when he started school as he spectacularly failed their speech assessment. His teacher was surprised. I have no idea why-I’d expressed my worries to her already-he didn’t really talk much-he spoke to us in Spanish as he’d learned that from Dora. He used it amazingly appropriately without any cognition that we didn’t immediately understand (I had to google some of the phrases altho repeated exposure to Dora and Diego had given me the basics). The pediatrician eventually did her tests and decided he was typical “but wouldn’t be surprised if he got a diagnosis in a couple of years” She told us to look up Aspergers and sent us on our way. It was a turning point for me.
A couple of years and another country later, the quirks we accepted as just his way began to impede that way so off we headed to a psychologist office. Then to the school who did their own testing. All manner of questions and assessments by so many professionals with different focuses. I knew. I hoped I was wrong but I knew. I’d gone thru on the online checklists so many times. Always check, check, check! I knew if he wasn’t considered autistic he would be at some point. Friends tried to offer reassurances that he was just fine as he was: everyone has quirks. Often, I felt like people thought I was trying to diagnose him unnecessarily. Why would we want a label for him. The stigma is real and wrong. Yet every strategy we’d read about and tried, helped either him or us understand something that had previously been a mystery. This was why we pursued a diagnosis ultimately. I truly didn’t want the results to come back as autism but at the same time, I hoped they would. It would justify my worries, my sleepless nights and clear me of being a crap parent. But more importantly, if he was “officially” autistic, then we hoped could get support and gain understanding for him.
I’d be lying if I said I wasn’t upset when every professional concurred he is autistic. But luckily, I’d already started lurking in the online autism world and by the time we got the diagnosis, I’d come to realise a diagnosis doesn’t change who my son is. The diagnosis just helps us help him. That is a good thing. Any dreams I’d secretly nutured for seeing my son to become the A* popular happy kid turn college star turn genius at work with a wonderful wife and happy kids were always my dreams-I imagine they’re every mum’s. Autism, for us hasn’t dashed my dreams but it has made me more realistic-they were just a bit premature and maybe I need to see what his dreams are first. Most mum’s just get to pretend a while longer. But we’re in Houston by coincidence so the commute to NASA for astronaut training won’t be too bad…who am I kidding! Houston traffic is the worst! 😉
Anyway, we just get on with it. We have days when it’s forgotten about and days when it’s all too obvious. We have worked out most of the “quirks” that upset the neurotypical apple cart and just found ways to make things work for us. Sometimes, it’s easy. Sometimes, it’s not. It’s helped no end getting a job working at his school. No more worrying about after school care, instant access to his teachers and other professionals. It’s great being able to pop my head around a door and just ask advice. I got some great training too which I was able to put to good use at home as well as in the classroom. And I love working with these kids. They’re wonderful. Completely unique. They trust you completely and that’s what I love about it all. Autism seems to strip away the need for bullshit. It’s honesty.
Then Joshie asked me this morning why he needs a special ed teacher. He’s already drawing comparisons between himself and his classmates, noticing the differences. Suddenly cereal got serious! I was so scared of telling him the wrong thing that would negatively affect the way he feels about himself. So this is why I heart autism. It’s a part of my son-and basically to hate autism would be to hate a part of him-frankly that’s just not possible. He is one of the kindest, caring, most sensitive and hardworking people I know-he just doesn’t sugar coat his demeanor for us oversensitive neurotypical types. Autism for me, has made me more aware of my behavior-it’s taught me not to accept things at face value. I hate the fighting Momma Bear autism Mom crap-autism isn’t me. I don’t have autism. I don’t understand what it feels like to be autistic. But I try to educate myself. I love how autistic authors are sharing their experiences so I can consider if I’m perpetuating behavior that is harmful. For example, I hate that victim mentality that autism is happening to someone because their child has a diagnosis-autistic adults are vocal in how these neurotypical worries affected their confidence-depression, stress, anxiety, reduced employment opportunities, addiction are very real concerns. My son is not broken. As Temple Grandin puts it “different, not less” So it has made me more confident in supporting his needs and I will strive at every opportunity that people just accept it when my son says he needs x, y, z to live his life as easily as us neurotypicals do. Everyone has that right.
Josh does face challenges daily and as his mom I’d be lying if I said I had never wished things were easier for him and that I’d not cried recently about some aspect to do with autism (Tuesday) but he just embraces his life. I may worry about his obsession over FNAF but then again, it’s easier to frame it as admiring his undying passion for an animatronic computer game which so far has led to him doing more reading and he’s currently programming with his Dad. That’s awesome in my view. I could get frustrated when he argues with his teacher over semantics but surely it’s better to ensure her understanding of autistic behavior when the kid actually had a point (obviously a little social story for the kiddo too but sadly for my neurotypical sensibilites he usually has a valid argument for his behavior). Seeing his need for routine could be considered as tiresome but actually, routine is just a way of ensuring honesty: you said we’d have dinner at 6? We have science every morning…Like I said autism is honesty! That’s another good thing we should be celebrating.
Sure, it’s not the easiest road and others face far greater challenges but it’s our road and he’s a wonderful navigator and I know for sure he’ll tell me if I’m heading in the wrong direction.
That, in a nutshell is why I heart autism.
(The picture is of lightening intersecting a rainbow I took at our apartment by lucky chance-scary, powerful, a little bit frightening but beautiful and awe inspiring at the same time)
5 thoughts on “Why I heart autism”
You expressed that so well and you do a wonderful job.
Would love to catch up with you and your awesome boys soon.
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It helps (and I feel bad I forgot to put it in) that I have been lucky to have great family in the UK and then great friends over here that became like family who are Josh’s greatest supporters! Definitely catch up! 😘 xx
This is such a lovely post. I have three second cousins on the spectrum and although it was difficult for the families at first, everyone is doing well now. Two of them are happily married!
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Thank you! That’s lovely to hear! I think I’m definitely more scared of the boys marrying and leaving me than I ever was about autism 😉