I began to write this post in my head in the small hours of another sleepless night after reading about another special needs Mum who is finding it hard to get a break. But my tired brain has forgotten most of what I wanted to say. If I'm not careful, this post will join the other eight drafts that I've begun to write since the beginning of August. There's no time, and if I do get a few minutes to spare my mind just goes blank. Or I want it to go blank, and escape for an hour with my latest fave TV series: Firefly, since you're asking.
My motherhood experience reminds me of the one time I ran the London Marathon. It all started out so well, I was so excited and full of enthusiasm. But as time went on, it got harder. And though I'll hopefully be caring for Smiley for life, in most respects the finishing line of my motherhood experience approaches. But when I reached the 20 mile mark on that amazing day in 1987, I "hit the wall" and I'm so afraid that the same thing is happening in my mothering.
Being a lone parent carer to two teenagers with different special needs is just simply overwhelming.
I tried to make a diagram to show how I spend my time - but you can't illustrate multitasking on a pie chart! Right now I'm head dancing with Smiley as I type. Thank goodness for auto correct. I'm finding this summer so long and so difficult. With two teenagers who are on screens the whole time unless I organise an alternative activity, and since they like different things, this often means one-to-one time. Great for them yes, but it means they get a lot less of it. Only the essentials are getting done: very little blogging, almost no blog reading - sorry! I just cannot keep up and so of course my health is suffering yet again - as I hinted earlier in the summer. Which means I'm more stressed. more tired and have to find the time and babysitting cover for medical appointments for me on top of everything else - I'm back at the hospital again today...
I'm not looking for pity. I'm not a special parent, I'm just an ordinary woman whose life has taken an unexpected turn, and I'm dealing with it as best I can. And I often feel that the Government, all their agencies and the rest of society are happy just to leave me to get on with it, at least until there is a crisis. But like the Duracell clockwork bunny, but even carers' batteries run out eventually, if they don't get recharged.
And yet I know I'm luckier than many. This tweet from wonderful special needs Dad Eric Olson @PressureSupport caught my eye recently. "Every night. 9pm. Got it down to three minutes to draw them all up and mix what I have to. It's a…"
It's not just me, it's a worry for the whole special needs community too.
Earlier this summer when the on/off Garth Brooks concerts dominated the media, and the Irish Government put in a huge effort to make them happen, I came across this quote from a fellow special needs parent:
There has been a steady increase over the years in the number of severely disabled children with complex needs surviving beyond early childhood. Thirty years ago most would have died in infancy. Medical advances have now prolonged life, but have not been able to guarantee its quality. Once the hospital has done its best and pushed the child out into the community, the burden of care falls on parents. Parents of such children now find themselves handling complicated medications, tube-feeding regimes and specialized life sustaining equipment - day and night often unaided for very extended periods. There appears to be an assumption out there that this sort of thing can be managed by ordinary people on an on-going basis. It cannot! There is no awareness in the community of the very high level of support that such parents need and little co-ordinated attempt to provide it. No parent will give up on a child, but the stress levels involved in some cases are ultimately a threat not only to parents, but also to the on-going welfare of the disabled child. I am sick hearing stories of the cack-handed approach of the HSE and other statutory bodies to providing back up services for such parents. Parents are told nothing about how to access services. They have to do the research themselves. They are constantly coming up against bureaucracy and incompetence, delays in provision, unco-ordinated action and bad manners - all the while struggling to support their child. It is a thorough disgrace which calls for urgent action.
We say it SO often, but nothing, NOTHING ever seems to change. Until we burnout. And something bad happens. Then society beats its collective breast for a few weeks and the Governments establishes yet another commission of enquiry to find out what happened. And then everyone forgets again. Until the next time.
Note: permission obtained to reprint the quote and tweet.