10 Things the Parents of a Disabled Child Want You to Know

Posted by Rebecca Highton on 4th October 2021 Additional Needs, Advice & Support, Disabilities

10 Things the Parents of a Disabled Child Want You to Know

We’re just like you. We love our child unconditionally and to us, our child is perfect. Yes, if I could, I’d take his disabilities away but that doesn’t mean he is any less perfect.
At times we get fed up, we’re only human and life is sh*t sometimes. No, I wouldn’t choose this life for my child but it’s the life he has been given so I’ll make damn sure he’s the happiest he can be.
My child is nothing to be feared or avoided. He cannot speak and struggles to move his arms and legs, but he is a child, just like yours. He is a child just like his twin, he just happens to be disabled.
My child throws tantrums just like your child, but these can often be on a bigger scale because he can’t communicate verbally what is wrong. It can take us longer to soothe him but that doesn’t mean his feelings are any less valid, he simply needs love, care, and attention.
My child loves to play just like every other child. He is happy and wild. He loves reading books and getting up to mischief.
Having a disabled child does not mean we’re ‘rolling in it’. Contrary to popular belief, disability benefits are minimal. Despite Alfie having a diagnosis that will never improve, every few years we have to apply again, giving the same information, filling in time and time again what Alfie cannot do.
The NHS/Government does not provide everything my child needs, it’s why we fundraise. We get the bare minimum. Though we are grateful for the equipment we are provided with, it is often old equipment that needs updating and is more cost effective for the NHS. Cost always plays a big factor when a child needs a new piece of equipment- often bigger than needs and suitability.
SEN parents are basically doctors, and that is no way intended as an insult to doctors. We need to know everything about our children, past issues, present and potential future. We also get trained in a matter of days, things it takes doctors years to get signed off on (no joke). The medical terminology and techniques become second nature- you need it to care for your child and keep him alive.
I don’t know how I do it either. For us, this was never a choice. Our child is disabled, and we will always be there, no matter how hard it gets.
I’m not superhuman and every time someone says anything along those lines, it reminds me of how different my life is. It reminds me of everything Alfie should have had.