A guest post in response to A letter to … my son, who has autism, for whom I’ll always do my best.
Emma Dalmayne has Asperger’s Syndrome and is the mother to an Autistic son and an undiagnosed daughter. She is a fierce and fearless fighter against MMS and cure culture. More of Emma’s work can be found at the Mighty and Autism Daily Newscast.
A letter to my son ….you have enriched my life and I thank you for it.
Seven and a half years ago after having my sterilisation reversed in a bid to have another baby my little son was born.
This is his story.
It was a beautiful Autumn evening and you arrived with the cord wrapped round your neck twice. You were so quiet, so beautiful with your big brown eyes and firm grip.
Your quietness didn’t last for long once you were home and sadly I couldn’t breast feed you as you had tongue tie and gastro reflux which meant you needed feed thickeners to weigh your milk down in your stomach or you would projectile vomit.
You still found a lot of time to light up the house with your beautifully infectious giggle and I’d watch you while you slept feeling amazed I had birthed such a lovely little boy.
It soon became more apparent to me that you were different to other children of your age.
As you grew the time came to take you to a nursery where you would line up the toys and always play with the pretend pizza in the little kitchen. The outdoor area was used only for you to ride one particular route round and round and you would meltdown if any one else tried to ride that particular bike.
On the way there you would have to touch each front door and you became intensely interested in car signs, learning each one by heart.
Other children would recite their shapes and alphabet while you struggled with your speech and only I, your father and your siblings could understand you.
You would have meltdowns brought on by sheer frustration attacking me and yourself, it was heart breaking to witness and I was desperate to help you.
Then someone whom I had never met, a stranger in a shop tentatively suggested you may have Autism. I knew nothing of Autism and went home eager to look it up, hitting Google as soon as I walked through the door.
What I saw elated and devastated me simultaneously.
The general outlook was grim it seemed as pictures of children rocking in corners , alone and lining things up as they didn’t know how to play “appropriately” were depicted in each article I read.
That wasn’t my boy! My son was funny, a joy and made the most delightful lines of cars and did cases in intricate patterns.
You craved others to play with yet had trouble initiating play.You would fall to the floor screaming and refusing to walk and I would sit with you kissing you and reassuring you that everything would be ok. You would run into roads and lie down behind reversing cars, why? I didn’t yet know.
After a referral to Speech and Language Therapy and then a further referral to the community paediatricians a year later you were diagnosed with the neurological difference Autism, over the two following years you were diagnosed with four more conditions.
You needed reins to walk safety in the street, as loud sounds I learnt would leave you bolting or sinking to your knees holding your ears due to noise sensitivities, some smart blue ear defenders helped with that.
As I researched and learnt more it became apparent your siblings were also on the spectrum as was I. I was diagnosed last year which answered a multitude of questions for me and I was now safe in the knowledge that I was not weird, odd or strange merely neurodiverse.
Mainstream school did not work for you as you floundered in a hostile loud and overcrowded environment, unsupported and bullied in an educational setting that should have nurtured you. You have been home schooled for two years and with play, speech,music and animal therapies weekly you have flourished.
Your speech has come on well and your confidence has soured. A bright little boy who, when his little sister was born took well to his new sibling and cherishes her, fiercely protecting her against any opposition she faces.
To you my son I wish to say thank you.
Thank you for coming to my life and teaching me patience.
For teaching me in the face of uncertainty to believe in you, no matter what.
For showing me there’s a reason for everything though it’s not always apparent at the time.
The meltdowns are frustration and the sinking to the floor was a bid to seek priopreceptive feedback in order to ground and regulate in a sensory hostile world.
The bolting was a need to be alone a need to regulate and pace himself.
The lining up and cause and effect breakages were him controlling his environment in a world that to him made no sense, the lines were dependable solid and controllable. The breakages were by him and empowered him at a time he felt powerless.
Thanks to my son I now stop when he does to look at flowers, pausing to study a sun ray through a cloud or a spider weaving it’s web in a hedgerow. His hyper focus is astounding and his memory incredible.
As all parents do I worry of what will happen to my son when I’m no longer here to care for him, his siblings are all well tuned with him and I know no matter what he will be cared for.
His father and I are no longer together though he see’s him regularly and our separation was not due to our son’s Autism.
My son knows he has Autism and describes himself as special, which he of course is.
I wrote this article in response to one I saw in this newspaper which depicted a view of self pity, bereavement and devastation. This is to counteract and show the readers that that is one view, it’s not however the only one.
As a spectrum adult I can tell you that a non verbal child can communicate through signing, Picture Communication Cards more commonly known as PECS or communication apps.
A child overwhelmed in a sensory hostile shop with strip lighting and crowds, smells assaulting their oflacatory system can be helped with tinted lensed glasses, ear defenders and a hanky with lavender dabbed on it to sniff.
Meltdowns are needed sometimes, and it’s best to stand back and allow the meltdown unless the child is self injurious, attacking others or in danger of bolting near a road, no need for restraint unless in those circumstances.
With the right support your child can flourish and if you allow them to, they may teach you something you previously hadn’t realised..
Your child’s ‘ job’ is not to grow up and fulfil your dreams and expectations. They were not born to automatically provide you with a framed university graduation certificate, pop out grandchildren and look after you in your old age.
They are people with their own dreams, their own passions and it’s our job to guide them, parent them to the best of our ability and above all else realise it’s not their job to validate you.
Their job is to be themselves and you are meant to celebrate that no matter what needs your child may have, neurodiverse, gay or straight appreciate you have a child and never grieve what could have been.
Rejoice in what is.