It was truly terrifying.
Since Sam was born, I’ve been there.
I’ve held him through as many seizures as humanly possible, for blood tests, lumbar punctures, bumps and scrapes when he’s had a seizure and bitten through his lip or banged his head/knee/arm during the throes of one of the wretched things.
While not his sole parent and sole carer, due to work etc it has more often than not fallen to me to be nurse, therapist, dietitian, and advocate.
So, handing over the reins to someone else was… difficult.
And his wonderful carer totally got it.
I already like this lady and the other lady who comes to care for him.
We’ve only met once, yesterday afternoon, when they popped over to say, hi, introduce themselves and find out a bit about this special little man they’re going to be looking after while Mum and Dad are at work.
Sam likes them too.
They have a warmth about them, and a manner that was so gentle that even Sam couldn’t resist giving a little smile.
For parents of neuro-typical kids, it's tough letting your child go with someone else, think the first day at school, or the first time they’ve gone out with a friends family….
But for us, the parents of non-neurotypical kids, there’s the added need to explain ALL about our kids.
Their needs, seizures, movements, how they communicate, how they can let you know that they like/dislike something/are in pain.
It's scary leaving someone alone with our child knowing that the child in question may well have a severe seizure and stop breathing, or may choke on vomit during/after a seizure and require emergency medical attention.
Although we *know* these are trained carers and will take everything he can throw at them in their stride, it is hard to relinquish that caring role and allow someone else to take the strain, albeit just for a few hours.
I find myself hanging around, not quite ready to leave my boy…
I’ve almost become dependent on HIM, not the other way round!
However, Daddy is now home and all is well...
Sam behaved like a gentleman and didn’t have any major seizures, and by all accounts has had a fantastic morning. I’m thrilled that we’ve got this support, allowing us to be parents not just carers.
We get some financial help with covering the cost of the service from social care through direct payments but they are nowhere near sufficient to meet the costs fully.
The sad thing for us is that as Sam is only 4, our direct payments are deemed to be for carers respite, NOT childcare.
And yet, our boy cannot access ordinary, mainstream childcare and is too young for special needs holiday clubs.
For us, it’s a price worth paying, but many others don’t have that choice… surely its about time childcare for SN children was given the priority it so desperately needs?