Heather was struggling to find the support she needed for her son Nicholas and was under a huge amount of stress, then she posted a message online asking other parents for help, and a woman called Jane got in touch.
New research from Scope just found that two-thirds of parents have had difficulty getting the support and services they need for their disabled children, and as a result are left feeling frustrated, stressed and exhausted.
Like many other parents with disabled children – this comes as no surprise to me whatsoever!
My 13-year-old son Nicholas has severe autism and learning disabilities and I’ve had endless issues getting the support I need for him. We’ve had to fight every single step of the way.
We even had to fight to get him a diagnosis in the first place – neither of the local hospitals wanted to take him on! Presumably because of the cost implications…we got passed from pillar to post and had to get our MP involved in the end.
But one of the worst times for us as a family was when Nicholas was placed in a school that wasn’t right for him.
It wasn’t the right environment for him at all. It got to the stage where he was doing nothing but lying on the floor each day and lashing out because he was so frightened. It was so upsetting.
We kept saying: this isn’t good enough! Over and over again. But nobody would listen.
I was so stressed about it all that I lost a lot of weight and got alopecia and my hair fell out. I saw my GP and he suggested anti-depressants but I didn’t want to take them.
In the end the school wanted to expel him because they couldn’t cope – but they still couldn’t find a school for him. So I got him signed off sick and took him out of school altogether.
In desperation I put a post on an online forum asking for advice from other parents of disabled children about finding the right school for Nicholas.
By chance a woman called Jane who lives in my area got in touch. She described her own son and it was like she was describing Nicholas.
She let me know that her son had just got a place in a brilliant school nearby, a school which I’d never even heard of.
Jane was amazing and helped me through how to get Nicholas a place there – it was a battle but we did it.
It is a school specifically for children with autism and it’s brilliant, he loves it. The change in him as been incredible.
If I’d never posted that message I would have never met Jane – and we’re still in touch now.
Scope has launched a new online community where parents of disabled children and disabled people can share their experiences and get guidance and practical tips from other parents and disabled people.
I’ve agreed to be one of the ‘online champions’ for the site and hope to be able to help people out when I can, like Jane helped me.
But I don’t have all the answers – and I expect I’ll be looking for more advice myself too at some point.
Chatting online to other parents certainly isn’t going to solve all your problems.
But at the very least it can be a huge relief to vent, and have some contact with other people who understand what you’re going through, instead of bottling things up.
Please do get involved in Scope’s online community. Because as well as asking for advice and tips you might be able to give it too.
And I know from experience that as well as getting support, it can be really rewarding to be able to say to someone who is struggling – I’ve been in that situation, I’ve dealt with that, and I’ve come out the other end.