Waving, not Drowning....

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.

Seating Assessment Clinic for Wheelchair Users...

Mr A is, at the age of 20, in his third motorised wheelchair.

In each instance, he was assessed by, and had his seating designed and fitted by, therapists from our local CP support service.

This has had mixed results.

Firstly, actually getting an application happening has always been difficult. The rules here in Queensland are archaic, and revolve around availability of funding, rather than user need. The rule that the wheelchair should last the user 5 years, is ridiculous in the case of growing children and teenagers. Even in adult life, a persons needs can change dramatically over that period of time.

Most of the therapists employed by the service organisation here, are graduates as that is all that the budget will allow. They cut their teeth (figuratively speaking) on our children, then flit off to greener pastures. Or that, at least, has been our experience. And we have been with the same branch of the organisation concerned for 20 years, almost exactly.

This means, that not only are they unwilling to bend the rules due to their relative inexperience, but they also know little about the process of assessing a person with CP for a new seating unit, as their knowledge is limited to some prac whilst studying and a fair bit of theory.

Now while I appreciate that everyone has to start somewhere, why oh why, do they always have to start with US????

I think I've taught more physios about Mr A's needs than I would have liked over the course of his lifetime. In the end, I reckon I could have done better myself with a block of foam and an electric knife. In fact we're almost at that point now.

Mr A's current seating assembly is woefully inadequate in so many areas, I don't know where to start. And this is after three different therapists have had a turn at trying to make it right.

Previously, at least the service provider had a method by which the seating was tailor made according to need. Now, they simply try to jumble together something from pre exisiting cushions, backs, headrests and supports, and it's a bit of a hit and miss affair, let me tell you.

Poor Mr A tires easily in his chair and suffers pain and pressure points. This should simply not happen.

So now we're trying the Seating Assessment Clinic at the local large public hospital. Word on the ground is that they are the bees knees.

Let's hope.

Tattoo sleeves for hand splints and ankle foot orthoses...

Here's a thought that came to us when we collected Mr A's most recent hand wrist splints. These have never been attractive things. I guess that goes for nearly all of the paraphernalia that comes with adequately supporting our disabled family member! But as soon as I saw them on him I knew I had a solution.

Those fake tattoo sleeves are just the thing. They come in all manner of colours and designs and are just the right idea to jazz up orthotics of all kinds at very little cost. I've ordered a dragon one for Mr A (they're readily available on eBay)and I guess I'll be using some sort of fabric glue to apply it.

I'll let you know how it goes!

Photos soon!

Parent to Parent....the best info is from one who lives a life like yours.

http://www.clubred.com.au/wp-content/uploads/2011/05/DOTS-happy-family-cartoon.gif

Well helloooooo!

I been blogging for a while now, but this is a new venture for me.

Over nearly 21 years as a parent of someone with a severe disability, a sister, and Aunt to people with a disability and a friend and mentor to people with disabilities, I am very much aware that the BEST quality of information comes from other parents.

Government departments and service organisations can only do so much and it's invariably other families who pass on the wealth of their experience.

I have much to share and it will take some time, but a bit of background.

My son has Cerebral Palsy, Spastic Quadriplegia. He is totally physically dependent. Fortunately for us, he has no other associated health issues and he can speak...unusual with this level of disabilty. His level is defined as 'severe'. He mobilises in an elecric wheelchair and...ta-da...lives independently. Yes, I'm serious, but more on that later.

He is one of five children and comes number four in the line.

I have had moments where I've literally wept at the state of the disability support sector in Australia, and back then, there was no Blog or website to help me.

I'd like to think I can slowly build something here that will be a valuable resource for other families like ours.

It's a big ask, but I'm going to try.

I don't see anyone else doing it, so it may as well be me.

We can all have a happy family, even if one of us has a disability. If fact, for us, some of our happiest moments have stemmed from experiences generated through Mr A and his disability.

Tomorrow I'll start posting some small experiences and resources. Stay tuned.