The thing that moved me to tears and gave me hope in LazerZone!
How full circle moments can inspire us to realise how far we've come
Dear neurokin,
Right now, for me, life feels a bit like I am stumbling from the wreckage of an earthquake, covered in dust and blinking in the bright sunlight. I have a feeling of relief; we made it out safely. And, there is still the aftershock from the tremors.
If you are wondering what the hell I am talking about, I’ve written much more my husband very recently having a kidney transplant here: The amazing gift that revitalised a life
My life is still dominated by hospitals and medical terms I don’t fully understand; phosphates - anyone? Phosphates have become a part of my daily dialogue until they are in check and balance and then I won’t need to use that word anymore.
I’m struggling to know what to write about or to fully form new ideas.
And then something happened at my youngest son’s 10th Birthday party at the weekend, that deeply moved me and then filled me with joyous hope.
I feel compelled to write about it.
Full Circle Moments
Over this past week I’ve noticed a couple of full circle moments, when you can look back and see yourself at the beginning, feeling that you have now reached some kind of end point that neatly brings the arc full circle.
Maybe it’s happening as my youngest son has reached double digits, the big 1-0!
My sons entry into the world was quick and surprising. He was born 6 weeks early and as his lungs were yet to be fully formed he spent the first 20 days of his life in the Trevor Mann baby unit at Royal Sussex Hospital.
Every day I was in that hospital providing him with the nutrients he needed, via a feeding tube, to help him grow strong enough to come home with us.
When I was able to I took a break, wandering to the nearest bookshop, which just so happens to be a beautiful space of tranquillity and calm Kemptown Bookshop
I didn’t have the energy to buy any books to read. Just being in that space, gazing at the book spines and feeling like they were bringing me solace was enough for me.
I bought a note book from there, one that I write in every year for my son, to tell him about good things that have happened for him.
Last week I sat in that bookstore again. This time I was there as a writer. I was enjoying a taster session of two year Creative Writing course that I think I’m soon going to sign up for.
I felt the power of that full circle moment as I joyously contemplated what colour palette a story might have.
I thought about how much me and my life have changed and how I love that I’ve grown into creative expression with words.
The second full circle moment I had last week happened at my son’s 10th birthday party at LaserZone.
“We’re not bothered about gender Mum!”
As I went through the guest list with him I said “there’s 5 boys and only 3 girls”
“We’re not bothered about what gender people are Mum! These are my friends and it doesn’t matter if they are boys or girls”
Ok then, quite right he is too.
With a good blend of neurodivergence in the mix too, I knew that two of the girls are autistic.
“I just want to know where the exit route might be”
When the two autists arrived I chatted to them individually, with their parents, to reassure them that if at any point it got overwhelming we could go outside and stand in the sunshine away from the noise, movement and weird neon lighting.
One of them had already thought about that and said “If you can show me where the exit route is then I will be fine”
I know for both of them, they were happy to be there and I know it was also a big deal for them. Party’s can bring all the autistic challenges to the surface, especially at the age of 10:
Sensory overload
Trying to read and understand the social cues and what is expected from us
Trying to communicate in noisy and busy environments is challenging
As I watched one of the girls awkwardly lean against a wall, almost trying to shrink into it, with all the self consciousness that you feel like everyone is assessing your every tiny move. Not fully understanding what people are talking about or the point of even standing in this spot.
In that moment, as I gently observed this, my heart felt the deep sadness of all those memories of my own. I could so relate to this young autist that I felt like it was me standing against that wall.
I felt such tenderness for her.
Knowing, whilst I could see similarities, my own experience is different from hers, I felt my eyes filling up.
I also felt a swell of relief at the progress of time. These two girls know they are autistic at the age of 10.
They have access to the information that will help them to understand themselves and why some things are difficult and bewildering.
They have a language to explain all of this and are able to ask for what they need, an exit route or someone who can look out for them from the vantage of a shared neurotype.
This was my second full circle moment.
I could remember myself at parties at that age, they were excruciatingly difficult experiences for me (as shown in the photo above).
And I could feel how much my life and the world has been altered, some 40 years later, having access to the information to help myself and the next generation.
“They called us weird and I want it reported!”
The justice seeking autist was furious when she came out of the Laser area of the party.
“Some people on that blue team were really mean to us! They kept calling us weirdos and I want it reported. Now!”
I was hosting this party solo and whilst I knew she had every right to be furious I also knew that the blue team were there for someone’s birthday too.
How best to handle this? I wondered. Knowing I was about to get into drink and food serving mode.
The kids from my party, the red team, were all in conversation about it, exchanging notes on exactly how many times these two boys had called them weirdos.
“I want it reported!” The justice seeker demanded again.
“I totally agree with you, it is not ok for anyone to call you weirdo’s. The thing is, those boys are here for someone else’s birthday and I don’t really want to make that birthday person upset by formally complaining. Let’s all go and sit down and have a chat about how best to deal with this, shall we?”
Once I had settled them with drinks and pizza I asked them “What can happen to people when they are in a competitive environment?”
“they can get cross when they are not winning” wisely said from one of the 10 year old guests
“Exactly! competition can be fun and it can also bring out the worst in people, making them say mean things or behave in mean ways”
We talked about how being called a weirdo feels horrible.
“What do you think you should say to someone who calls you a weirdo?” I asked
“Thank you! ….. because it won’t make it seem such a big deal that they called you a weirdo”
“Exactly!”
Blimey, what an amazing thing that this 10 year old girl had just said. Already at such a young age she knew how to take the power out of someone trying to make you feel bad about yourself.
“And weirdo’s win!” piped up one of the boys “weirdos are winners!”
For yes, my wonderful 10th birthday party, red team, did win at LaserZone and also won a bit of my heart by the hope they brought to me.
* I’m a weirdo…What the hell am I doing here? I don’t belong here…..
Everyday I see a media story about the latest public figure who is using autism as a political punch bag, pretty much doing the same that those boys had in LaserZone, calling us weirdos on a world stage.
Not that I am trying to diminish the danger of the misinformation they spread or the damage it does in the stigma it causes. This stigma can be amplified to dangerous levels for those most marginalised by difference.
Please take hope from this LaserZone story I share. Because in some ways it is getting better for the next generation.
We, the generation of late discovered neurokin, who are helping the next generation to embrace their neurodivergence and have environments to thrive in, are calling this nonsense out.
We are giving the next generation access to information and united openness about all that their difference brings to them and this world.
Maybe we shout a big old “Thank You!” in the face of the public figures name calling.
*yes, that is a line from the Radiohead song creep! I can’t help but share my autist thing of thinking in song lyrics or film lines. Sometimes it creeps into my substack!
Wow Andrea, there are so many moments in this piece that I can really feel. The way you’ve written the story is brilliant.
You handled it so well by asking those questions, and to hear that wisdom from a 10 year old girl must have been so moving, I think I would have felt the same. It gives me some hope that different ideas are finding their way into the minds of little people (amongst all the other noise). x
Ps. I used to live in Kemptown so I loved being able to picture this!
Pps. I went to laser quest as a 7 year old unidentified Autistic girl and was freaking out because I didn’t understand that it wasn’t real!
Wow. Just absolutely incredible.