Sunday 16 April 2017

Autism and the new life that it brings

At this time of year; despite the rest of the world seemingly partaking in endless fun and frivolity, for families like ours… well we can sometimes feel an acute sense of isolation and pain.
The family traditions, celebrations, and get togethers that have become somewhat mandatory during Easter can serve to highlight to us that our family simply isn’t like everyone else’s.
The changes to routine and school holidays, the family roast dinners and fish on Fridays. The ‘fun’ egg hunts with his cousins in his nannas back garden in the rain on a drizzly Easter Sunday afternoon. Well, all these things my son finds hard.

Yet year after year we have forced him, pushed and cajoled him to partake in our traditions. At times, I am ashamed to say even ignoring his own wishes because we didn’t want his sisters to miss out on what the rest of the world was doing.  

Because this is what families do at Easter isn’t it?
They have fun.
Its idyllic and perfect, all smiles and happiness.
Isn’t it?
Its baking and egg painting, Easter bonnets and hiding mini eggs around the house while the kids are sleeping. (Well that’s what Facebooks and Mumsnet tells us anyway.)

It’s not meltdowns and anxiety, ear defenders and being stuck in the house for days on end. Timetables that have be followed and mashed potato butties for dinner… is it? (There no mention of that on Instagram is there?)
Well, who’s to say what’s right and wrong, what we should and shouldn’t be doing and what our family life should look like? Where does all this pressure to be a ‘picture-perfect’ family come from anyway I want to know.
For families like ours, times like this will inevitably throw up complications and changes to family life. We have learnt to accept that.
Over the years, I think the passage of time has taught me to go with the flow and roll with the punches a bit more. Its helped me to develop a thick skin to other people’s opinions and sod what everybody else thinks. They don’t have to walk in my shoes, or my sons for that matter! So, I have learnt to do what right for us.
For me and my husband, my daughters…and my son.
So, this year due to my sons deeply help beliefs about palm oil, there will be no chocolate for him this Easter. I have to admit it’s been a tough few weeks to get through… as you can imagine at this time of year with chocolate products bursting off every shelf, hijacking every TV advert, and lurking around every corner…avoiding the dreaded palm oil has been somewhat tricky to say the least.
And not only that, but this year he has become increasingly upset and aggravated at all the products that unsuspecting well-wishers have bought as gifts for his sisters that contain palm oil. He feels that because he holds these beliefs, then so should everyone else in the family. Which can make for some interesting exchanges in communication and emotional regulation as he learns to live in a world in which he can struggle to navigate.
Why do humans eat palm oil?
Why are humans so thoughtless to animals?
Why would we want to hide eggs all over the garden, that’s just weird?
And why do people say that Jesus came back to life after three days, he can’t have come back to life that’s impossible, so why did the teacher say that in assembly? … And what on earth has that got to do with chocolate?
So many questions whizzing around in his poor little mind.
There’s no wonder then really that he then can’t cope with the additional stresses that all these family events at Easter can create.
·         Visiting other people’s houses, and the huge social anxiety that brings.

·         The sensory overload of people chattering, food cooking and palm oil filled chocolate everywhere.

·         Unexpected visitors with small children who haven’t yet learnt that their older cousin doesn’t like hugs and finds playing with them impossible. It’s not that he doesn’t like them he just finds it all too hard so shuts himself away for safety.

·         Well-meaning family members that want to talk to him about school, who are unaware that their questions freeze him to the spot with fear as he doesn’t know what he should say and do in these situations, so he can appear rude and abrupt with them making them not know what to say next.
So, this year there will be no pressure from us to attend the traditional family egg hunt, and he will be eating his mash on bread for dinner.
It’s taken me many years to realise that I was the one putting pressure on myself to be the ‘picture-perfect’ family.
But my family is anything but ‘normal’, anything but ‘perfect’, and that’s great…because that’s what actually makes us… well normal!
My kids are all individual, unique and my family celebrations must reflect that. True acceptance for us begins when we accommodate everyone’s needs and that has taken us some time as a family to understand.
You see life for us has had to become a bit of a juggling act in which we take turns, and negotiate roles. I am not ashamed to say that we do what we need to do to avoid meltdowns, create a peaceful house for our kids to grow up in and learn to ride the tide of emotions that comes with being an autism family.
So this Easter, my son will visit his beloved airport with his dad while I attend the family egg hunt with my daughters. And then we will come together for an hour in which he can tell his family about the airplanes he saw (if he wants to )or he can go to the sanctuary of his nannas room with his IPAD upstairs (if he wants to) No pressure.
He will be given a chimp statue and a model plane instead of Easter eggs, and he will spend his day doing what makes him happy.
The days are long gone when I would let people tell me what I should and shouldn’t be doing with my son. How I should be stricter with him, and feel guilty as they whispered within my earshot “what a shame it was that he was missing out on all the fun.” No more will I make him feel unsafe by forcing him into situations that he finds impossible (because no one ever came out happy when I did that I can tell you).
I won’t let anyone tell me that parenting in this way means that we are pandering to him, or spoiling him. That’s simply not true.
But parenting this way does mean that we pick our battles, accept his challenges, follow his lead, embrace him for who he is, and strive to accommodate the needs of everyone in the family.
When my son is happy, I am happy, my hubby is happy, and his sisters are happy.
That’s just the way our lives must be. Complicated, unconventional, bonkers, and bloody wonderful!
So, happy Easter to all of you, I hope you spend the day doing what makes you happy…
But if you’re not quite there in your journey yet and you’re feeling the loss of the life you feel you have missed out on, then please take hope from my story. After all that’s what Easter is really all about isn’t it… hope, love, acceptance and new life. I have been rock bottom and had days where I didn’t know where I would find the strength to carry on. But I promise you, it does get easier.
Having a child with autism isn’t the end believe me.
In fact, it’s quite the opposite, it’s the beginning of a new life.
You will learn to roll with it, face the challenges that come your way head on, and you will eventually take strength from the fact that no one’s life is really ‘picture-perfect’. Because believe me behind all the smiling Facebook posts real life is happening. Burnt fairy cakes, tantrums and money worries.
We all have issues and challenges, autism or not, it’s just it’s harder to hide behind ours that’s all! And why should we I say. Embrace the bonkers, be kind in yourself and don’t allow other people’s judgements to affect your journey.
Happy Easter
Mrs M xx

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