When my son was born, I wrote this:
Inside your safe and dryness,
storm-drenched, I’m happy.
Wrapped in your sighs and smiles,
all aches and shivers, I’m well.
Beside your sleeping skin – soft as silk,
pale as paper -Wakeful and despairing, I’m peaceful.
Bound up in your absurdity, afraid and alone,
I am giddy with laughter.
No one could have prepared me for the burning clarity of your pain,
Brighter than mine, so vital.
No sound has ever moved me like your cry, quick to the heart,
Straight to my arms, all thought bypassed.
Every time-worn doubt or fear I’ve ever had is forgotten, dulled, diminished.
New terrors draw close, so profound, only your joy can calm them.
If love is a blinding light, turned suddenly on what was half in shadow,
Then you ignited my universe –
a billion stars unfolding from a tiny speck-
Filling up the darkness.
From the moment he was born, he changed everything. To know what it truly is to love another life more than yours is at the heart of being a parent.
Two years and nine months after he first lit up my universe, my son’s nursery called to say they wanted to ‘discuss some concerns’.
In August, we paid for a private clinical psychologist to assess him, after learning the wait for the NHS was four months.
The psychologist’s diagnosis was autism.
I have found it very hard to talk about this. For a long time, talking about it made it real. Concrete. Unchangeable. But talking, writing, crying – won’t change things. But maybe it will lead to acceptance, somehow.
My son is sweet and loving and as obedient as you could expect a three year-old to be.
But there are things so obviously not right. I didn’t notice them at first – I feel like I am accountable. Why didn’t I see? Why didn’t I notice earlier? He was just my gorgeous boy. So charming and so normal to me – but now I see them every second of every day, the things that separate him. He speaks well – more than well. Sometimes he sounds like an old man. But his language misses so much. He speaks without fully communicating.
On Wednesday the 7th of October, he was fast-tracked to the NHS community paediatrician who deals with neurological and developmental issues with children. This is the first step to actually getting official help. I sobbed three times while we were all that office – the four of us: my family.
In our bubble, my son is ‘normal’. In that room, he had a profound developmental disorder that may affect every aspect of his life forever.
I agree with this report, says the paediatrician. The signs that he is not neurotypical are clear. Even from the moment he walked in this room, she says, she could tell. We can’t say it is high functioning at this stage, she says. He is too young to know how severely it might affect him.
He flaps. He repeats. He holds his ears. He rocks. He can communicate wants and needs and facts. But he doesn’t express himself so well. He struggles to communicate with other children and most adults. He is almost silent at nursery. He can’t do things he should – climb stairs, take off shoes. Noises, smells, sights – all can be distressing to him. Sometimes it is impossible to know what might upset him, impossible to know what will make him feel as if his heart is breaking.
Sometimes, he looks into my eyes.
Sometimes he can’t. Outside the family, he can’t.
He has had lots of tests – to rule associated syndromes out. Terrifying things – fragile x, muscular dystrophy… the day that the results will arrive looms in front of me, a lump in my throat, a weight on my chest.
Best ways, he doesn’t have them. Best ways – what? I don’t know. He grows up. Loves. Lives. Is happy.
Worst ways? I shouldn’t think about it. I desperately don’t want to think about it. The possibilities flicker past my retinas, too awful to ignore, too terrifying to entertain properly.
My son looks normal. Casual observers will just see a three-year-old. I hardly know what people will think. People will think I must be overacting, dwelling when I don’t need to be? He looks normal, acts normal. Three year olds are renowned for losing control over trivial things. It’s what they do. There’s no way to know what he will be. People will think he could grow out of it? It could be the mildest form, whatever that means? I am selfish. I am thinking of the ideal image of what I thought he would be, not what he is.
He will have speech therapy and occupational therapy and all those blood tests. And that is good. It’s the right path to help him.
I will do anything for him. I will fight for the best of everything. I will have unlimited patience, unlimited time to teach him, help him. I have my baby girl to love and help and care for too – and she must not lose out. But otherwise I will stretch myself to help him, as far as I possibly can, stretch myself to the far corners of that universe that he makes brighter.
But I am so lost and terrified. And so guilty that feeling lost and terrified is a betrayal. Because he is, always will be, always has been, who he is.
And that is….perfect. How could he ever, EVER be anything but perfect to me?
But feeling devastated that he might not be what I thought, might not be able to experience the things I hoped, is something I cannot escape. People telling me he is normal enrages me. People telling me he is different, that it is obvious he is different, makes me sob.
It is obvious. Too obvious to be high functioning? Diagnosed too easily, too early to be Asperger’s? I have reached out to other mothers in this position and they all say it took YEARS to get a diagnosis. Appointment after appointment, nagging professionals who don’t agree – their eight, nine, ten, eleven year-olds still can’t get straight answers from doctors.
Every professional person that has seen my son has said they are convinced he has autism within a few minutes of meeting him. I can’t decide if this is a good thing or a bad thing
I can’t decide if it is a relief or cause for more worry.
And I don’t know how to move on. How to feel ok. How to stop worrying about him not having a life, not being a ‘whole’ person, and just help him be the best person he can be.
How do I do it? How? Please help.
Please note, since this post was written we have come a long way. Please read ‘No Apologies’ for an update on my thoughts about autism and our journey.