Day One for the Autism Awareness Blogathon
(A note: to all those people who are here after searching on the topic of Mount Everest, and there are a LOT of you – sorry! This is about my personal Mount Everest, not the actual mountain)
I’m not starting at the beginning. I’m starting in the future. Because as much as you worry about things like aggressive behaviour, stimming, echolalia, noisemaking, sleep and eating issues, obsessions, spitting and all the other really fun challenges a child with autism will present to their families, the biggest challenge by far is the future. It’s the great unknown.
As parents, we want everything that any parent wants for their child –love, happiness, fulfilment, friends, reaching their potential etc. But we want more, much more. Although the process of diagnosis and early intervention is confronting and arduous, I have a sneaking suspicion it might be the easy part.
Little kids are cute, they scream, they act out, they don’t play nice, they get messy and they find it hard to manage their feelings. An autistic child is all those things plus delayed and exaggerated. We are bigger and stronger so we are able to handle all that (mostly).
By the time they are teenagers the tables have turned. They can be bigger and stronger than us. By then you better hope you’ve got their toileting and self care skills happening. You’re hoping their language and/or communication skills are functional at the very least. Managing their emotions and impulsive behaviour? – yes please! Massive supermarket meltdowns? – a thing of the past that you can have a good laugh about. Please.
What is the future you see once your beautiful child has left the (hopefully) safe haven of the education system? Is it a disability pension and parental care at home? Is it a job and living independently? There’s a massive world between those scenarios and they aren’t even the extremes.
I might have days where it’s all I can do to get through it, nights where I’m waking with tears cos I’m not living up to some crazy version of an ideal parent that I have stuck in my head. But I want to split my focus between now and the future. I can’t take my eye off today, but I want to put effort into creating the best possible future for my little boy. If I don’t start now, it will be here before I know it and I won’t be ready.
I have a feeling that this is Mount Everest and I’m not even at base camp. I haven’t even got all my supplies together. I don’t think I’m going to be able to rely on government and good will to make the future one to look forward to. Like most things, if you really want it, you’re going to have to work for it. So that’s what I’m going to do.
Tomorrow: Light it Up Blue with Laser Beak Man