It’s 2.18 in the morning and my little daughter is jumping on the bed wearing a Minnie Mouse dress and meowing, her little face lit up with happiness. We are watching a Barbie film and my son has just fallen to sleep.
My girl has just watched Frozen and is insisting on having a piece of tissue stuffed down the back of her neck as a cloak, even though I found some lovely soft fleecy material that could do the job and is the perfect size she screams “No!” so we stick with the tissue.
I say to her “ Will you be a good girl for mummy and sit down?’.
Then I stop, she has stopped and looked at me, she’s not smiling anymore.
I’ve just implied she’s not a good girl because she’s jumping.
I feel dreadful and smile tiredly telling her “ Or jump and be a good girl.”
You see she was doing no wrong, she was expressing happiness at 2 in the morning bouncing to balance her vestibular.
So often parents see the behaviours our children express and believe they are being naughty, the sensory seeking flooding of the bathroom and the pouring out of the shampoos and tipping of washing powder.
People look and see our children lying on the floor screaming and think ‘ Brat!’.
They look at us and wonder why we don’t take control, drag the child up and as I’ve been advised in the past “Give him a good slap!”.
That friendship ended that day.
I was accused today of not understanding other parents ‘ grieving process’ when their children are diagnosed autistic. I never experienced grief.
I experienced relief, anger that I wasn’t listened to sooner and was disbelieved.
I experienced sadness for the difficulties my son would face and panic of how my children would cope when I’m no longer here.
Lastly I felt intense resentment for anyone who asked the questions and made statements
born of sheer ignorance.
I’m sure you’ve heard a few of these?
So they can grow out of that right?
What’s his special talent? I heard ‘they’ all have one!
He’s fine they are over diagnosing these days!
Was it the vaccines? Many parents say it is you know? ( from a nurse who was about to vaccinate him with his pre school booster).
What’s wrong with his legs? ( out in his major buggy).
Don’t let him hit you! I wouldn’t have that shit.
Take his iPad away, he’ll learn.
Discipline! That’s all he needs.
A good slap would sort that out.
Diet, it’s all about Diet. The GF/CF diet worked on Jenny McCarthys son.
Sip water from the empty shell of a giant African land snail.
He just needs to interact with other kids, he’ll learn.
Make him go to birthday parties! He HAS to.
He’ll eat it if he’s hungry.
Get his metals tested.
Leave him to cry he will fall asleep.
So, you won’t be having any more kids right? I don’t think you should……
You had a life, now look what you did….
It’s a sickness, illness, disease….
Your not brave enough to try and heal him he can be recovered!
That’s the ones I can remember. There’s more I’m sure, and all meant differently.
Some intentionally hurtful some well meaning, all raising a resentment in me that would make me want to smash someone’s face in.
You see we as parents put up with that,
We cope with seeing our child have meltdowns, we get hit and spat at.
Sometimes we cry, we run out of the room and cry through sheer frustration because we cannot work out what our baby wants.
But let’s look at that again.
Our child tries to cope with meltdowns so frustrated they hit out and spit at the one person they know will never leave them.
You see your in this together with your child.
No one knows better then your child what you are feeling, they know because they are feeling it ten fold.
I’ve learnt that signing is instant, if my child can’t express what they desperately
need to communicate we sign.
If they are melting down I stand back as I know that a touch can feel like an electric shock, unless they are self injurious or in danger of running into the road I do not touch them.
I’ve learnt to take a deep breath and count to ten, if I have to jam my fingers in my ears to do this then I do.
We all as parents know our children better then anyone.
We know them better then the paediatrician to whom we have just described our child’s newest behaviour, while they peer at our child sitting there quietly.
We know them better then the teachers who look at us patronisingly as we describe the meltdown our child had after school the previous day, we boil inside as they look at us and say “ Well their fine here. They don’t do that here. Is everything ok at home?”.
We know that that meltdown was due to one of three things, sensory overload, frustration, lack of communicational skills to be able to relay how they are feeling.
I hope I have shown that I do see where you are coming from as neurotypical parents.
I cannot say I know how you feel as I have a unique understanding of my children where as you may experience difficulties.
Please notice I said MAY.
That doesn’t mean that I don’t suffer frustration, try witnessing your child’s meltdown while feeling a meltdown yourself. Try coping with your child screaming in excitement when you have sensory overload.
I don’t pretend to know everything, but I do my best and so far I’ve done pretty well.
It’s now 3. 15 in the morning, little Minnie Mouse is having a feed and watching Balamory, she’s takes my hair and waves it back and forth in front of her face as a visual stimm.
She’s wide awake, and we will party on till the early hours.
She’s my good girl, and I bid you goodnight.Share