Once upon a time not long before Covid-19 changed life as we all knew it I chatted with a grandparent at the school pick up. Grayson attends a special needs school and after collecting him it was onward to collect my neurotypical daughter Verona from her school.
On the agenda for after school that day was a haircut for each child (always a nightmare) and a visit to the school uniform shop, as next day it was school portrait photo day at Verona’s school, and Grayson was to join her for a sibling shot.
When the next day rolled around it was awful and we quickly came to the realisation that the staged, portrait photos are just not a good idea for Grayson. That sibling portrait photo that many families take for granted having proudly on display in the home would be their last until Grayson can handle the environment better.
As it stands we got one half decent shot, the execution of which sent our boy into meltdown and required the photographer to edit out the red blotches from Grayson’s face.
“If I Don’t Give Her A Break, She Will Break”.
Back to the grandparent at the pick up. She said this to me, “If I don’t give her a break, she will break”, and it almost made me cry right there and then in that pick up line. It was just so beautiful.
She was referring to her her daughter, who is a wonderful parent carer to an autistic child. This mum was away on a much needed and deserved overseas mini break…what is one of them? I hear you! I was so touched by what her mum had said and it has resonated with me ever since.
Parents of children with autism can face numerous stress factors, psychological, physical and financial. Studies have found links between parenting children with severe autism and some symptoms of PTSD.
Psychologically, the toll of caring for a child on the severe end of the spectrum comes from having to fiercely advocate for your child’s needs, feelings of grief and loss over the life you had always imagined for your family and the disparity between that and the reality, the fight for services and therapies and for basic acceptance and inclusion.
Not to mention the knowledge that your child may never live independently and will require some form of lifelong care. Your own mortality weighs heavy on your shoulders as you can’t help but wonder and worry about what their life will be like when you are no longer around. Is it any wonder that so many autism parents experience enhanced anxiety and often depression?
Physically you’re dealing with extreme meltdowns, self injurous behaviours, aggression towards others, sleepless nights that continue way beyond the norm with a typical infant, the prolonged changing of nappies with no signs of it changing any time soon.
Now imagine the toll that meeting all of those physical needs will have on your body given than a seven year old will weigh significantly more than a two year old child in nappies. Always hunched over, constantly picking up your three stone child, wrestling them into submission just to keep them clean. Routine chiropractic treatment becomes par for the course.
Then we come to financial stressors. The sad fact is that there is a massive gap in fit for purpose wraparound and school holiday care for children with SEND. So unless you are lucky enough to have familial support with childcare, you’ll likely see financial loss from the situation you find yourselves in.
I personally have gone from a career as a full time Operations Manager to now being a full time parent carer. My son goes to a special school, but there is no wraparound provision at all there, not to mention viable options for school holidays.
We enter into mortgages, car finance agreements etc on the basis of dual income, only to then find circumstances drastically altering your earning power, despite having so much to offer in terms of qualifications, skillset and experience.
Bearing in mind all of these factors, when I heard that line, “If I don’t give her a break, she will break” from my friend’s mother it struck a chord and it touched me. This lady just gets it.
Sadly, we are not in a position where practical familial support with Grayson is an option. As a consequence, at my lowest point I found myself reaching out to social services in desperation for respite support and – at my invitation have had a disability social worker come into my home to assess Grayson’s needs and my own needs in my role as his primary parent carer.
Thankfully, we were successful in achieving a package for respite support and Grayson has a wonderful carer who takes him out for two and a half hours every Saturday. We get to drink a cup of coffee while it is still hot, spend some time with our daughter and let out the big breath that we didn’t even realise we were holding in.
If you’re in a similar position, please do take any support available to you. Whether its from family, friends or the social care disability team, if your children return to school on Monday and you spend all day binge watching and drinking coffee…that’s fine. Just remember, ‘If you don’t get a break, you will break”.