When I hear or read other stories about families either at start of their autism journey or even many years in one thing always sticks out.
Fights and struggles.
Fighting for your child’s rights, wants and needs. Struggling for people to accept autism, or if they accept autism struggles to allow for autism.
I can’t say I’ve not had this problem, my first fight was right at the very beginning when his appointments kept getting cancelled. At the time portage was a godsend, not only to Z but to keep me sane. To try and calm me and maybe in hindsight warn me this isn’t going to be as easy as you may think. But you will be fine.
Diagnosis, done, help long gone. It’s as if your sometimes pulled in under false pretences here look you can have early help with community language and play, here’s protege here’s your diagnosis then things stop.
You’re dumped in the huge wide world of parenting to start with not sure if what your doing is even right, then your given a piece of paper saying your child has severe autism and you’re left all alone.
You don’t know what you’re supposed to be doing, where to go for help and rely on other parents. But what happens when you don’t have other parents to help either?
I know in my heart if Z was in mainstream we’d be on a completely different path, and I think a very lonely path. People may say they accept autism maybe even understand it but do they allow for it on a daily basis?
It’s hard to walk into a help group, where you don’t know anyone and are terrified of being judged. That’s why I love my school group. We’ve all been there, and if we haven’t right now I’m sure it’s coming up in the future. My Thursday night at soft play with our nas friends is huge too, we learn so much from others being in our position. To see bigger older children running around soft play with a smile on their face is worth it. The sen sessions are massive for us as parents to try and get out with our children, massive for our children who would other wise be looked at and judged for running around soft play.
I also have my play group mothers, play group, sounds like so many years ago when Z would run back and forth knock those babies off their feet and other parents would sit and tut, my playgroup mothers just accepted it was Z. These are now my friends, if it wasn’t for these accepting Z then for who he was then yes we’d still be on our lonely path.
I understand I’m lucky, Z is lucky. We have great people in our life, always have.
I look at school, I see how hard those staff work, Z is pretty easy compared to some of those children and they have my thanks every day! They are helping Z and teaching him not only academically but how to be a child, how to play, how to copy how to fit into society. The time and effort you can say they get paid for it but there’s plenty more jobs out there. They don’t have to stay.
I don’t have to fight school. We may not always see eye to eye, the head may look at me and mutter under her breath whilst trying to hide from me but I don’t really have to fight her.
To be able to go about our day to day lives without struggle I really am lucky. I know autism changes and I may not be in this position even as early as next year. But for now I’m lucky. I have my friends maybe different groups but still my friends, Z has his school, his teacher and someone who loves him for who he is.
Next time you see a child being ‘naughty’ ‘spoilt’ or even a ‘screaming shouty little brat’ give that parent a smile, you have no idea what they’ve even had to fight for that day. Maybe no one believes the sensory troubles,or how hard getting out of the house is.
For many people the struggles are real.