In the course of Mr A's life, we've had many opportunities to join a 'support group'.
I did so, when he was first born, at 28 1/2 weeks gestation.
It was a Premmie Parents Group.
I didn't like it. They all wallowed in self pity a lot, when I just wanted to know what to do next. When I met up with some of them years later, my son was the only one who was living a 'different' life through being a Premmie. He was the only one with a life affecting disability. The others were all fine. So why all that wailing and breast beating at the start?
That one meeting, put us off support groups forever. To this day, if I hear the words, I run screaming from the room.
The trouble with support groups is that often they're not all that supportive. It's more like a 'drowning in unison' group. That's how I felt anyway. I was already overwhelmed by the situation I suddenly, and unexpectedly found myself in, and sitting around moaning about it really wasn't helping.
I needed someone NOT in my situation at that time, to grab me by the hand, pull me from the quagmire of emotion, fear and anxiety, and show me how the future could be and would be.
I was told at the beginning that Mr A would never walk and would have to attend a special school. Well, they were right on the not walking, but competely wrong on the 'special' school. But let me say this. There's more to his life than the lack of ability to walk. Walking is over-rated as far as he, and we are concerned. He gets around just fine and dandy in his motorised chair, always has somewhere to sit, and gets preferential treatment at sporting events and concerts. And yes, he attended a 'special education unit', but this unit was on the campus of a mainstream high school, where he was valued and accepted as part of the normal throng of high school life. He went to the school camps, he attended the semi-formal and formal, he gave speeches, played sport, and cheered the school teams on at sporting events. He also completed a normal high school curriculum, earning an OP (Australian high school competency score with the highest being 1 and ranging through to the lowest at 28), of 12, bettering many of his 'able bodied' peers. In the end, the two things that we feared most at the start, have not been things to be feared at all.
We were also lead to believe that he would never live independently, and would forever be tied to us, depending upon us for every daily living task. Well, we proved that one wrong too, but that's a long, long story for another day.
I needed hope when Mr A was first diagnosed, and frankly it was thin on the ground. The service organisation wanted to tie him up in knots with equipment and orthoses, and I just wanted my son to be as normal as possible. They treated me with disdain when I wanted to pursue 'alternative' treatments, but came running to pick my brains after I did so, and had a good outcome.
They argued and debated so many of our decisions, which, long term, have proven to be the right decisions. Things like having rods inserted into his back at the age of 14. This is considered a standard procedure here for young people who have CP amongst other things, and who exhibit low trunk tone and scoliosis. It's a painful procedure, with a lengthy recovery. It would have meant around 4 months off school for him, right when he was settling in and had a large group of friends, and a difficult time for me as his carer, as a full trunk cast on a young adult who is already totally physically dependent is a challenge to say the least. In consultation with Mr A, the surgeon and ourselves, the decision was taken NOT to subject him to this ordeal. For him, it's been the right decision. He would not have gained any significant measure of trunk control over what he already has, and the idea of having a foreign object inserted next to my sons spine, just didn't sit right with me or him.
If I'd been in a 'support group', I may have been differently swayed. That's the other thing with support groups. The 'group' always expects you to fall into line with their way of thinking, and so frequently has our thinking for Mr A and his future been out of step with current party line, that we probably would have been booted out as heretics, anyway!
For us then and now, our mantra is 'no support groups'.
When we had our hands emerging from the quagmire, we weren't drowning, we were just waving goodbye.
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