Our Autism Life and My Two Big Cs
I follow a few Autism-focused blogs. Like the Autism Spectrum, there are many many different blogs, all with a different viewpoint. It can be very reassuring to read about someone else’s struggles that are similar to your own. It is also good to be able to celebrate with them with huge milestones which to others might seem insignificant.
Three Little Birds and Finding Cooper Voice are two of my favourites and a while back they both showed me exactly why I like them.
They talked about two parts of Bear’s Autism that I struggle with the most. It’s nice to read that other parents feel the same and openly talk about it so that I am not left feeling like a bad person.
Autism and Compartmentalisation.
Three Little Birds posted on the 19th of April how her son compartmentalises his life. She talks about the routine in his life. How certain parts of his life go a particular way and other parts of his life go another particular way.
Bear does this too. It’s mainly School vs Home.
At school he must wear his uniform. Getting him to wear different things for special days is very difficult.
He doesn’t like me being in the classroom. I am mummy at home, I am not mummy at school. When I go in for parent help, the teachers put me with different children as they know Bear will not like being with me.
In the same vein, he doesn’t like seeing his teachers or EA outside of school. We saw his EA at the shopping centre once. He hid and refused to talk to her. Not because he doesn’t like her. But because it wasn’t school.
The Good
It can be very useful though when you understand how it works in his overactive brain.
He is a very naked Bear at home, but he knows that underpants must be worn at school. It’s part of his regular routine when he puts on his uniform.
He has almost the same lunch every day. I’ve tried to give him other things or let him chose other things. His response is almost quizzical! What else would be in his lunch box?
We rarely have school refusal. He may just simply enjoy school, but he knows that Monday – Friday are school days.
We walk the same way each day and he knows where he has to wait if he is ahead of me. This might just sound like routine, but on the days we walk that way that isn’t school, he doesn’t always wait.
And the Bad
But it can be hell when things aren’t how he expects.
Meatballs always come with spaghetti. We had a full-on meltdown when I used twirly pasta instead of spaghetti.If he has ham for dinner, it must come with two fried eggs and the fork sticking out of the ham steak. I am very grateful I was able to convince him that eggs aren’t really green. But if the fork has been forgotten or put on the side, take cover.Don’t even get me started on homeschooling during COVID.It. Was. Not. Good.
Sam I’m not but Bear loves his Green eggs and Ham
Getting him to do home work after normal school is hard enough. Getting him to do school work or join in on Zoom for online classes was impossible. School is School. Home is Home. Never the twain shall meet.
As I mentioned in my previous blog post, Life of a Bear in Lockdown, when we attempted online therapy, he became very violent with me. Not his normal self at all. Therapy only happens when they are physically with him, or it doesn’t happen at all.
What helps?
It’s all about understanding and preparation.
When we need to do things out of the routine, he needs communication so he can wrap his head around it.
Tendril Theory by Erin Human
The best way I’ve found to explain this is Tendril Theory. This Cartoon was created by Erin Human.
This is great when it’s about moving from task to task, but for my Bear, the same applies when changing the parameters of his compartment.Recently, he needed a day off school so we could see his paediatrician.
This meant taking Frog to school but not him.
It meant not putting on his uniform on a school day.
It meant not having his usual hot dog lunch order.
Because we talked about it beforehand and talked through what he would be doing that day (which has its own routine!), he was quite happy that day and everything went smoothly. he was able to retract his tendrils.Had we not talked about it and just ripped out his tendrils, he would have been much more unsettled, more difficult to deal with and the day would have just been painful.
Autism Life and Comparisonitis.
On the same day Three Little Birds posted about Compartmentalisation, Finding Cooper’s Voice posted about having the “perfect” life.If you only read one or two of her posts, you would think she is the most perfect “autism mum” as she seems to handle life’s challenges with her son Cooper with amazingness.
Normal for who?
In this post, she points out that there are still the hard parts of her life. Not as a “woe is me” call for attention, but to show how ‘normal’ her life is. Normal for her, and that’s ok. Her normal can’t be compared to anyone else, because no one else has a Cooper. No one else has a Cooper and Sawyer.
Even as a mother of a child who has Autism, I can’t compare our lives as our boys are totally different. Their Autism is different. But it can be hard not to sometimes.
Social Media; Helping or Hindering?
I love social media. It has given me the perfect way to keep up with friends and family that I would otherwise not see for far too long thanks to my living in Australia. Most of the time, I am able to remember that what you see on social media is the best parts of someone’s life. Most people don’t tend to post about the crappy parts unless they are trying to make a point.
But when I’m having a bad day (yes even I have bad days!) and I see all these people having fun, it’s hard to not compare their lives to ours. Add in my own anxiety and it can easily spiral into a pit of despair.
Why didn’t we get invited to that? Is it because of Bear? Was it because of me? They are so much better parents than me, look at all the activities they did with their kids over the holidays. It’s not fair that they get to do all those activities over the holidays. Why are their kids so well behaved and mine are creatures from the depths of hell? My poor angelic children are stuck with this useless piece of blergh as their mother.
Look at her, she has six kids and looks amazing. Look at her, she has children and a successful career. Look at her, she is such a mother earth figure. Look at her, so well turned out.
It’s exhausting. And useless. Most of the people I will be comparing myself to will have their own insecurities. Many of them will be doing their own comparisons.
Moving forward, slowly
Comparing myself with others is a lifelong personal issue but one that is definitely getting better as I get older. Maybe I’m getting wiser with age. Maybe I just have less fucks to give out these days! I know that our autism life is easier than others, but it can also be more challenging than others. Most importantly, I know I am doing my best.
What helps?
Communication. Again! It’s so key in life.
If I am struggling with comparing myself to others and spiralling, I talk. To my friend or my Facebook communities. I open up to my family or to Husband. And if none of that helps, I talk to my doctor.
I’m not willing to let myself spiral down so far as I once did. Because no one can compare to me. No one can compare to my Bear. And no one can compare to our Autism life.LOVE WHAT KATIE WROTE? Find her HERE https://www.whatkatiewrote.com.au
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