My son has additional needs. Even writing those words brings a lump to my throat and an overwhelming sadness that makes me want to scream with rage, sob with grief or get back into bed and wallow. Life wasn’t supposed to be like this. This kind of thing happens to other people. But it has happened – to me and thousands of other Scottish families.
As many will testify, there is a grieving process – mourning the loss of ‘normal’ life you thought your child would lead, the relationship your siblings would have with one another and the devastating impact on everyone. What compounds it is that, for many small children, including my 18-month-old son, they remain ‘undiagnosed’ – everyone, medical professionals included, know there is something wrong neurologically. However, they can’t pinpoint what it is and initial tests come back inconclusive. A diagnosis may become available. Or not. I liken it to a prolonged torture.
And so, you fight. You fight whatever has happened and help your child as much as you can, with physio, occupational therapy, speech and language appointments, both private and through the amazing NHS. You fight to socialise them, to spend time with other children and stimulate those little brains. This is where problems arise.
I’ve found there is a lack of suitable early learning and childcare for children under three with additional needs. In Edinburgh there’s only a small handful of additional needs playgroups – the council needs to get its act together. But there’s very little provision for parents who want some actual time off, perhaps to spend time with another child starved of attention. Perhaps to catch up on housework, paperwork or even just work. Or maybe to sleep for a few hours.
When we started our search we were told by one Early Years Centre in Edinburgh that, because our son couldn’t sit unaided, there was no guarantee he wouldn’t be left in a corner. The thought was just heart breaking. We were also told that because he was tube fed (he now has a gastrostomy) we would have to pick him up early to feed him – or ideally stay with him throughout.
These options were utterly pointless – I’d rather stick with the playgroup. We eventually found an Early Years Centre, complete with staff having additional needs experience who could take our son a few mornings a week and have loved him like their own. I know other mums from the additional needs playgroup haven’t been so lucky and have resorted to private nursery, using Capability Scotland for one-to-one support or just ‘carried on’.
I may well be wrong – and I hope I am – but I strongly believe young children with additional needs aren’t widely catered for. This seems a false economy – the first three years of a child’s life are crucial for development, additional needs or not. Help us to help them early and later costs surely could be reduced.
Maybe it’s time Scotland’s councils and government sit up and look at the children who don’t tick the mainstream boxes. And for us to put on those boxing gloves.
Sarah Howden is a PR consultant and freelance writer. She lives in Edinburgh.