This evening, on World Autism Awareness Day, I reflect on the posts I’ve seen on my social media feeds.
I wondered which heartfelt post to share…I did share one video, which I felt explained the saturation of daily life that so many people on the spectrum endure.
But no heartfelt written post really did it for me. I was sad that although I tapped the ‘like’ ‘sad’ and ‘love’ buttons many times, none really hit the nail on the head for our life with our three boys with Autism.
However, isn’t that the irony! That’s what the spectrum is all about.
I hear parents having such conversations as to whether their child can do a certain thing…but not another. I have hugged friends who have been called out by other parents questioning their child’s diagnosis. I have read and read and then read again any form of literature, telling me about autism, what it’s forms are and how to communicate with people on the spectrum during times of crisis.
Yet nothing…NOTHING can fully prepare you for having a child who is on the spectrum.
To REALLY understand Autism is to live it 24/7. Day and night.
To deal with an exhausted child having a meltdown after 3 hours sleep, while desperately trying to get their school uniform on them, and not be late to school.
To then come home and tidy up, work, iron, hoover, do household chores, check appointments, wonder if you’ve got time for a coffee and biscuit in place of lunch 5 minutes before you have to do the school run to bring them home.
To then experience the ‘coke bottle effect’ where they’ve been holding it together all day at school and then explode at home. Cook tea, which inevitably won’t be eaten, get homework done, battle the bathtime/bedtime routine and then spend hours trying to settle them to sleep….
….to get another 3 hours sleep before starting all over again.
That bit is exhausting. So many people ‘KNOW’ about autism…it’s what they’ve read, what they’ve heard, what they’ve been taught, but only those people who live with it 24/7 truly UNDERSTAND autism.
So that’s the tricky bit of Autism parenting and caring.
Now here’s the wonderful bit:
Our children have difficulties daily, yet they have no choice but to get through it.
They achieve against the odds…and when that happens it is AWESOME!
When your child takes their first step at 4, says ‘mamma’ at 8, eats a pea for the first time; or maybe eats something other than chicken nuggets, it’s amazing, and as a parent you feel like you’ve won the lottery. When they come out of nappies at 9, kiss you bye bye at 13, and tell you they love you at 15….
Autism is devastatingly beautiful and makes you appreciate EVERY SINGLE piece of progression, no matter how big or small. Your heart swells so big it could burst time after time after time…because you know how hard it is for them to do.
For us, all three of our boys are very different and they have shown us the world through different eyes. They have shown us a different life, and have shown us how life needs to be lived.
We listen and we learn from them as they grow and develop. They are the experts, we are the students.
That is how The Shippey Campaign began. Learning from our eldest and finding out what he needed, and knowing there were more people out there who needed us to do something.
The Shippey Campaign is our contribution to Autism and sensory difficulties. We have gathered an amazing amount of understanding of the spectrum and are now putting that back into the community.
We ask parents to support each other, not to criticise parents for their style, what works for one, will not necessarily work for the other. Please show understanding and compassion to other parents at all times.
For those not directly associated with Autism, please understand that as parents we are doing the very best that we can, on very little sleep and very little energy. We do everything that you do…run a home, work, cook, clean and have lots of hospital appointments and therapies thrown in there too…So if you see a parent or carer on their knees in the supermarket, attempting to calm a screaming child, look in their eyes and feel their despair, see their exhaustion and please, don’t criticise; you see that child might just have heard the beep of the cashiers scanning wand.
Thanks for reading.
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