Something I’ve mentioned before (multiple times) but still really bothers me, is the lack of parental support of children with additional needs.
Does it even exist?
I am so honoured to often hear from parents like myself; but sadly it’s not always in the best of circumstances with many not knowing what to do or how to find what they need. Balancing life, work, families, finding the right support and education for your children. It can be a nightmare. And with a child with additional needs, everything is magnified. Or perhaps it’s just that we (or at least I…I can’t speak on behalf of anyone else) feel like we’re (I’m) in a tiny glass box.
Support isn’t always money or time
I remember when Jude was very little and I struggled a great deal to get my head around all the many things I needed to fit in within the week. His physio exercises, OT games, speech therapy practise. I felt so so alone. Everyone else with toddlers were out socialising, playing in the park or helping their child to make friends; I mean we did this too but there were always other responsibilities and worries at the back of my mind. I was lucky in that I had two wonderful friends with children of a similar age that I’d met at the local playgroup. I didn’t attend very often because I was so nervous about people staring. Back then, I cared so much about what people thought. But over the years you learn to lose that concern and recognise that if anyone says anything negative then honestly, that’s on them.
It took me a long time to suss that out. Stupid really.
But even back then, when Jude was a toddler, I was beginning to find things difficult.
I don’t want to sound all Meghan Markle on you now but I didn’t once get asked by a professional if I was ok. And we saw many of them. In truth, it didn’t dawn on me to even think about how I was feeling in myself back then. 24/7 was about Jude, finding him support, trying to help him catch up with his peers. I just assumed the immense stress I was experiencing was normal. Everyone sees a portage worker and fills in hundreds of documents, don’t they?
Get to the point Alice
Now, I’m wittering and I promised I wouldn’t witter any more.
I guess my point is simple. What support is there for parents? I don’t mean financial support, nor do I mean that of time. There are schemes available to allow you an hour or two, occasionally an overnight space of respite. Back in the day, Jude sometimes attended a respite centre for the afternoon. It was wonderful but understaffed and at times they’d have to cancel last minute if not enough people were in. Cue a little more stress.
In my opinion, the support that would be hugely important for parents of children with additional needs would be that of therapy. Someone to talk to, balance ideas or just listen to you rant. I’d love to be able to set something up like this, as I see the struggles and pain in the words of your emails. And I feel it because I’ve been to so many of these places.
Maybe something like this already exists and I’ve just not seen it. If this is the case, please someone send me the link because I will share the hell out of the relevant contact details.
In the meantime, if I can ever be that ear to listen to you, please just send me a message.
We need to look after ourselves in order to look after our babies.