There is one part of being the mother to a disabled child that I really hate... Fundraising.
You might not think they necessarily go hand in hand, I didn’t back before. But when you have a child with such complex needs you soon realise that this magically safety net, we thought we had is full of big gaping holes.
My husband and I have always valued the NHS and the importance of contributing towards it, we would always say how worthwhile it was knowing that should something happen then we would be looked after if needed.
Then something did happen. We had Thomas who came with a whole host of diagnoses, professionals and additional needs. It really didn’t take long before we started hearing the words “I’m sorry but there just isn’t funding for that”.
“I’m sorry, I know you cannot access a supermarket, but we cannot fund the piece of equipment that would allow that”. To begin with it was a mild frustration, the items we needed were just a few hundred pounds and we found ways to self find them. Thomas had a few birthdays and Christmases with pretty boring presents!
But Thomas got older, and our collection of equipment got bigger. He needed an indoor seating solution, he needed a wheelchair, he needed a relaxing seat, a bath seat, a standing frame, a floor seat, a therapy bench, a walker... The list goes on.
I spent hour after hour in appointments with specialists or researching on the internet for the equipment that would provide him with the right support and allow him to engage in family activities. Trouble is, once we worked out what we needed I kept hearing “I’m sorry...”
“... It’s too expensive”
“... We don’t have a contract with them”
“... It’s not our responsibility”
“... It’s not our budget”
Our Occupational Therapist told me that her department annual budget for all the children on their case load was less than £50,000. Now, to be fair, I don’t know how many kids are on their case load, but that’s not a lot of money. Not when the stair climber we most recently took receipt of cost almost £10k.
And it’s not that dissimilar with therapy, we’re lucky, we’ve managed to access NHS physio and speach and language pretty much fortnightly from birth. That’s very unusual, and it’s set to drop once he starts school in September.
They just don’t have the staff to provide more than that. They don’t have the funds to provide the equipment that best meets his needs. Now I’m not an easy woman to say “No” to, but sometimes even I have to admit defeat.
So, what then are our options? Despite having a comfortable income, we can’t keep up with the spiralling costs of having a disabled child. As an example, last year we spent nearly £6,000 on additional therapy. For that kingly sum I’m sure you’re imagining we might have seen a therapist very regularly, perhaps a couple of times a month?
You would be mistaken, it paid for 10 days on intensive therapy, approximately thirteen 50-minute sessions. It was brilliant and very worthwhile, but it gives you an idea of the sums we are talking about.
Very few families will be able to maintain those sorts of costs year on year, so the only other avenue available to us is fundraising. There is nothing quite so humiliating as having to ask friends and family and strangers over and over again for money. But us special needs mumma’s are like lionesses, ready and prepared to do anything for our cubs.
So, we make social media pages, and start selling our cause. Not too upbeat, people need to understand that you’re in need, but not too depressing as people might get bored. Exposing your child to public scrutiny, constantly weighing up how to protect their dignity while showing people why you are so desperate to beg for money.
It can leave a nasty taste in the back of your mouth. But then, then there are all the wonderful and generous people out there who support you over and over again, cheering you all on, helping you out as much as they can and it reminds you of the beauty in the world and humanity.