Sometimes I imagine what it must be like to raise a neurotypical child.
I imagine calling his name and he actually answers, “Yes mummy!”
I imagine asking what he wants and being told, instead of being led by hand and having to guess.
No pointing.
He directs me to show me what he wants, and sometimes what he wants is not in plain sight.
He cries.
So I search and I guess.
I try.
I get it wrong.
And I try again. Until I get it right.
Otherwise the crying sometimes won’t end.
I imagine being able to ask someone to babysit without it feeling like such a huge request.
I can’t exactly ask people to watch him without feeling some level of guilt or like I am burdening them.
Because he really needs to be watched…LITERALLY!
When he moves, I move.
He has zero awareness of danger.
So I stay close.
Always alert. Always on.
I imagine not having to become an expert in things I never ever planned to learn.
I imagine sitting with doctors and health professionals and actually leaving with answers.
Or at least some guidance.
Instead, I often leave with uncertainty.
So I have to research.
I have to learn about all kinds supplements like five or so different kinds of Magnesium!
I have to learn about diets like Gluten Free-Casein Free.
I have to read and read and read.
Sometimes read science journals even.
All in trying to make decisions with long-term consequences and very little certainty.
I imagine education decisions being simple.
You know, as simple as going to the same school around the corner from my childhood home.
Instead, I know his education will have to be different.
Very different.
His schools? Very, very different.
I imagine participating in a mainstream school communities.
I imagine participating in arts and cultural activities.
I imagine him making friends and going to their houses to play after school.
I imagine the childhood I had, if only my son could have just a slice of all that carefree play.
I imagine adapting and problem solving from such a tender age.
I imagine not having therapists of all kinds on a rooster.
Speech. Occupational. Behavioural.
Appointments. Appointments. Appointments.
I imagine not having to go through such slow progress.
And not having to carry the hope that the small gains will add up over time. That they won’t be lost along the way.
And I imagine not spending most of my days overthinking about all these things and more.
I think about his future.
What kind of adult will he become?
What will he be able to do?
What will independence look like for him. Will the independence even come at some point?
I think about a future where I am no longer here.
Who will care for him?
Who will notice what he needs when he cannot say it?
Who will protect him?
These are quiet questions and imaginations I am sifting through every day.
The kind that come late at night and even as I am sitting through the traffic.
The kind I don’t always say out loud.
But today I choose to.
No, I am not afraid.
I just want to shed some light on a responsibility that stretches far beyond the present.
I just want to share a reality of a lot of parents and guardians of children on the autism spectrum.
I just want to share what I know a lot of us imagine.
This is a note to myself and to those who will recognise themselves in it.
I see you. I know how heavy this can be.
And you are not walking this road alone.
If you are a parent or guardian who carries your own quiet imaginations, you are welcome here. If you feel comfortable, share one of them in the comments. And if you’d rather not attach your name to it, you’re welcome to send it to me privately or anonymously.
You are not alone and trust me he does hear you when you call his name, even answers but just not in the way we were taught to listen. I often remind the parents that I get the opportunity to walk with on their journey a few things:
1. The world as we see it, is the same way they see it. The big difference is that we have learnt over time to be okay with certain things that are not necessarily okay and so we are taught to push through whereas these champions are actually unafraid to express themselves, voice out and act out how they actually feel.
2. The world often times misses the point they are trying to make because we were trained to fit in, we will pause everything and do everything even lose ourselves just to fit in. They won’t. They really are champions in that they will always be the most genuine people in the room. No hidden motives, no lies, just truth in it’s purest form. Next time you get one thing right, whether eye contact, a smile, a high five, that is the most sincere smile you will probably ever get.
Note to all: autistic individuals are not trying to fit in, they want to be understood, accepted and affirmed.
You are doing great mom, just by being there. Proud of you momma ❣️
Wow Sophie this is so so so helpful! Thank you so much for sharing and I think this is what I have struggled with the most on this journey. The world has forced me to adapt and I don’t know how to help my little one navigate it in his own uniqueness.