Every time I looked up something regarding Autism, or checked out a behaviour Noah was displaying, the good old Facebook algorithm flooded all my social media with other autism parents. At first, it was great, I found out loads of useful tips through other peoples experiences, but for a while, it was information over load. Positivity over load even, and it just left me feeling like something was wrong with me.
No one talks about it. No one wants to be seen as anything less than an Autism Warrior in the face of their children‘s challenges, but the truth is, no matter how amazing our children are, it’s still really, really hard.
Getting my head around the idea that I may never truly hear “I love you mummy” after years of trying to have a child, resulting in the arduous process that is IVF? THAT was tough. All I’d ever wanted to be was a mum, and I felt like I was only half a parent. I’d carried him; I’d given birth to him, fed him and kept him warm, but I couldn’t interact with him the way I’d expected to. I had all of this extra “stuff” to give him, but he wasn’t interested.
I’d imagined I’d be one of those crafty mums with paint out every weekend, getting messy and baking cupcakes. That I would sit for hours on end playing with him and teaching him the alphabet and animals noises, and I’d be really patient and endlessly creative. When that didn’t happen I found it really difficult. I was trying to equate the mum I wanted to be with the mum that I needed to be, and I certainly didn’t feel like a warrior.
“My child is AMAZING because he’s Autistic” I used to see all over my social media. Why didn’t I feel like that? For me, my child was AMAZING despite his Autism. His Autism stole my patience, it gave me sleepless nights, not just with worry about his future, but because some nights he just couldn’t calm down enough to sleep. His Autism made engaging with him the only way I knew how, really difficult, and left me at a loss of how to teach him. It stole his voice, and worst of all, it made me ashamed of myself, because I didn’t LOVE his Autism like so many other parents did.
I will not pretend that the road here hasn’t been horrendous, but what I can say is that it gets better. I was asked this week “if you could cure his Autism you just would wouldn’t you, it would make his life so much easier” and with complete and utter honesty, I can say now that no, I wouldn’t.
As we’ve learned to engage with Noah in HIS way, we’ve rediscovered our little boy. His personality is shining through it all, and not despite his Autism, but because of it. His way of communicating, his cheeky side eye smiles when he knows he’s up to no good, his limitless affection and love of cuddles, and the way he uses us as a climbing frame for play time. It’s all him, and he wouldn’t be that way if he wasn’t Autistic. The ONLY thing I would change would be to give him a voice.
I still don’t feel like a warrior, but you don’t have to, and there’s certainly no shame in it. Just carry on loving your child the best way you know how, because at the end of the day it’s all they ever really need.
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