Following up on that last post, I want to talk about how I went to a ‘Coping and Resilience Strategies’ talk at our special needs playgroup centre a while back (way way back). You’d think it would have been well timed, right?
There was an educational psychologist who had a special needs son who had come to talk to parents like us. She was ten years ahead in her special needs journey and felt she was able to come chat to us. Perhaps it was that I was the only parent there with a terminal diagnosis, and one of the few who was regularly receiving announcements of other children we knew who had died, but her talk didn’t resonate with me.
First, she talked about coping. I think there is a huge difference between coping (which we all do out of necessity to keep our children safe and alive) and coping well.
I’m not coping well. And you can tell. I’m snappy, unfocused, and go from fine to deep deep in the abyss. In the meantime I have to hustle to get myself moving, but that hustle has zero results, I’m hustling but I’m a mess. I’m easily distracted and really have to force myself with lists and checks to make sure Mikaere’s needs are met (I’m not talking about his basic needs, I can do feeds, nappy changes and meds and appointments with my eyes closed. I’m talking about chasing up that gastro and respiratory referral that went nowhere, calling back the wheelchair lady who called to book an assessment and his anti-epileptic dose needs increasing and I should reach out to the neurologist and I need to chase the nerve/skin biopsy sample to make sure the fibroblasts get to the researcher, and I need the community nurse to update the gp with his latest doses cause the pharmacy got a prescription with the wrong ones last week. The OT needs chasing, because he’s due another block, and his chair needs a new pommel/groin strap that makes his current chair unsafe. Can I fit in more CME or ABM? I need to chase the therapist…) That stuff, the never ending special needs loose ends that would fly off into the wind if I’m not careful).
But it’s work. It’s work that requires attention to detail and focus and time and I have none of those things. At first I was all make it achievable. Do five things. Just five. But then Kai had a seizure or an unexpected therapist showed up on the wrong day or the carer was sick and couldn’t come and my day was derailed. My days are always derailed.
So come 3pm and I haven’t eaten and am only half dressed (despite the three therapy appointments we’ve already had) and I need to hustle to get Kai down for a nap and still do his blend before 6pm and just… I’m struggling. I’m struggling. It’s all hands on deck, what do I need to do to get through.
Anyway, back to that talk. She didn’t give us strategies for coping. She asked US to provide strategies. Shut up. I have no strategies, which is why I came to the damn talk. I want to know what it is I can do that fits in Kai’s day that’s affordable that I can do.
There weren’t many. Exercise and therapy and socialising (aka, drinking. Not even kidding). But they’re all things that get cancelled on a derailed day, and our days are often derailed. The main thing on the list that I could do was drink. I’m not even kidding. But I can’t use alcohol as a coping strategy because I need to be sober for Kai.
After the not very helpful talk I went to the local pub with a handful of other social needs parents. I drank gin and bitched about the inefficiency of the NHS central booking/appointment system, and nodded as other parents bitched about EHCP’s and having to fill out the DLA forms and fighting with their dieticians about the blended diet. It was beautiful. But that was one night, when my boy was safe at home with Sam and a nurse. That’s not a regular thing, and so sue me if I don’t want drinking to become my main coping mechanism.
My point is we live the special needs life. It’s hard. So hard. But we move forward out of necessity, because these are our kids lives. We cope out of necessity. We show up. But that doesn’t mean we’re coping well.
Coping well, that’s what I want to know how to do.
It occurs to me, that as I reach well over two years of living the special needs life, as he gets older and requires more support, and the support we get is less, I now understand why special needs parents ahead of us have the attitudes they do. They’ve been in the wars longer, they’re less green, and they don’t have answers either.
I don’t have any answers. Hey ho. Onwards we go.
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If I can say… yes, is draining; my health is suffering the stress the fear, the coping in silence all the doubts the Drs were telling me and now I see on my daughter is trying to find a way to keep her with better quality of life.
She got T21, she’s my sunshine; but still trying to help her to find her voice, her speed, her movements, her certainty, her light.
I feel you, and here in a parallel world I still running like you mum, to keep myself giving everything I can to my girl, born also in 2016.