Well, the snug seat has arrived, but it arrived up at home rather than Edinburgh, so there is a delay with the photograph - I'm sorry about that.  I was thinking though, that actually I could have a use for it.  If I can get a job and save up for the spring frame base, and also the car seat fixing kit, then I can either do some training and be a driver for special needs children, or I can do something like loan it out short term to families who are awaiting equipment, if it would be suitable for their children.

Given my love for working with children, and especially those with additional needs I've been applying for jobs as a playground supervisor and as a learning assistant.  These would actually be pretty close to my ideal job, although I know there will be unforeseen downsides as well, not least all the beurocracy and red tape that risks standing in the way of a job well done.  Still, i just looking over some of the diary entries here proves that it takes ingenuity and imagination to fight against that, and/or get around it somehow, and bringing out these characteristics in a person has to be a good thing.

One job that has apparently been cut by the council is that of the perepatetic respite carer.  When me and my sister were younger, we between us were quite a handful.  Because we had food avoidance issues when very young, and yet had to have high calorie and low protein diets, we couldn't really have food from people we didn't know, and yet someone trusted always had to be around to supply calories, or we could die too.  Case in point, one day my sister,Mum and possibly me and Dad too - we went for a walk and my sister, being energetic and little, was running around and back and forth between people.  She ran out of calories and ended up comatose in the hospital.  And that was with Mum, who knew us better than anyone.  Since friends can and will only be able to do and learn so much, there was a huge workload on Mum, and I bet similar situations occur with others.  Since we had no learning or physical disabilities, respite care was usually not suitable.  I do remember visiting a centre, but we can't have been eligible or else Mum wasn't satisfied, becuase we never stayed there.  What did work for us though was a respite care worker coming round for a few hours each week, with their own car, and caring for us to give Mum a break.  We went to places like the park, the swimming pool, the library and museum, or just played at home.  Two of the best things for us were that we gained a lifelong friend who we still see now for fun and nostalgia, and also she taught me a lot about caring for disabled children from when I was just seven years old.  That job has been cut now, although the hospice runs a similar one, and there seems to be nothing that fills the gap quite as well. 

One thing I did hear though was that in Inverness one of the respite care centres, which was an in-out one, is becoming residential now.  This, the council says, is so that they don't have to pay expenses to send these people further away for respite.  Now, I personally think that if this is done carefully it might be quite good.  If they are saving money then they should have more money to spend on services that could help.  For example, they shut down the special needs nursery that was hosted at the developmental assessment centre: with the money saved by the residential respite centre, they could re-open this.  I don't care if only two special needs children attend - to those two the service, if good, jmust be such a blessing, not just for the families, but for the children themselves.  Then again I do think it's important to make sure there is some kind of short term respite centre that the children can go to, as long-term will not suit everyone.  So little funding, so many options needed.  That would be where the missing millions comes in of course.

So in summary - if the council doesn't play their cards right, then as I see it this is the criteria you will need in order to get good quality help:

- moderate to severe  physical disability well (as there do seem to be more resources for physically disabled people e.g. ramps, sliding doors, changing rooms, toilets etc.)

- OR moderate to severe learning disability to get one to one time - and that is purely from an educational point of view. 

- either severe enough to mean the person can't be cared for at home meriting long term care in a respite centre, or life-threatening to merit hospice home visits. 

Those that would not be well provided for might be, for example:

- Those with disorders that require rigorous management e.g. eczema or dietary requirements,

- Those with a stress or autistic spectrum disorder which pose difficulties with friendship and integration (inevitably that would mean the families options were different from others e.g. outings, meals and holiday choices), but who do have self-awareness and no cognitive or physical development delays.  Basically, being aware of your own problems still does not necessarily mean that you can solve them yourself. 

This last point brings me to another service that was cut:  SSA, or the Scottish Society for Autism.  It was cut because the Highlands were already covered by both Highlands and Islands Autism Society and the National Autistic Society.  It was cut almost overnight when I was about eighteen, possibly slightly younger, and in some cases the families had no warning of the cut - just turned up and found the building closed and the support workers made redundant.  But SSA offered some services that I really miss, for example the Autism Outreach service.  This organised for a person or people from SSA to take some people on the autistic spectrum to do fun activities.  E.g. meeting weekly to go swimming, or meeting for a day of art, or just to go to a restaurant.  They also had an annual Christmas party involving games like charades and celebrity heads.  The nice thing was that the same people often came along to different events, so it was a way of making friends.  I made three good friends with Asperger syndrome there, and others who were more severely autistic were given a chance to join in fully - and they really did. I am not saying that NAS and HIAS are doing a bad job, and there was talk of organising something like that in HIAS, but nothing solid seemed to materialise that I am aware of - or at least not as solid as that run by the SSA.  So there was no replacement.

I think those kinds of services are particularly good for those just diagnosed with Aspergers or autism or something similar, because they help put things in perspective and stop the disorder seeming so alien.  Meeting other people, making friends and having a good time with them not only helps you make friends with the same disability, but it shows you that you are not as different from other people as you may be made to feel from the diagnosis description.  I feel completely comfortable with my Asperger syndrome now, and with interacting with people, and coupled with the fact that I am an adult, those particular services may no longer be suitable.  But it is good to know that there are real people (as opposed to purely internet research) you can chat with, even just a drop-in socialising club with things like a computer bay/small book loan/ambient lighting and such.  And though I know it is proactive and admirable to organise all these things one's self it can be daunting not just to run but to maintain, detracting somewhat from the object of the place, which should in part be to de-stress.

I know this has been rather a hotchpotch of thoughts, but that is why the diary project is so valuable, in my opinion.  Thanks for reading this entry!