If we were rich we would have access to so much more help, so much more intervention, and so much more security for the future.
As it is, we are not rich.
We rely on NHS services and council services to provide health and care and heavily subsidised playscheme groups for the fun elements.
After three years of seeing the same paediatrician via J's school, I learnt that we did'nt have to stick with them. I only stumbled upon this fact when making a round about complaint that promises from this paediatrician were not materialising and that appointments were never forthcoming for anything that had been suggested to me.
So, there it was. We could change paediatricians. But, as is life, it was not going to be that simple. Oh no. No, what had to happen was my old paediatrician had to be told why I did not want them to see J and myself anymore. So, rather uncomfortably, they know my complaint. Not exactly helping us to keep away from stress and worry. Plus, ironically, this paediatrician is also around the clinic that my baby son attends for his eyes. Double whammy of embarrasment.
If we had the money we could afford a private paediatrician and one that we felt was working for our best interests.
What is going to happen to J when he needs to leave for residential care?
We will have to put his name down for a council run home and hope we pick one that has a good record of care, a low rate of complaints, offers a proper structure for autistic adults and their specific needs (as opposed to a generalised mental institution) and is not threatened with the looming shadow of closure or streamlining.
But naturally, these homes will have waiting lists as long as a mile, and even then it may still have politics about who is accepted.
If we had money we could pick and choose a private home. We would'nt have to compromise on the standard and quality of care and we would feel safe knowing he was being cared for without the fear of him being moved out due to the council needing to make yet more cuts to the disabled ( as opposed to cutting their ridiculous expense accounts and pointless training weekends in top country hotels).
I have been accused in the past (by not very well meaning persons of whom have no personal experience of their own child with a disability) of thinking too much about the future.
Well, what else am I to do? We see even now the contempt governments give to life long disabled people. Yes J is my responsibility, but at the risk of martydom, I may not be able to cope with him as an adult. I need to mentally prepare for him leaving my care. The process of gaining a place at a preferred home is long and so being ready in mind as well as practically seems more logical to me.
Now of course I am not blase about him leaving. In fact it hurts me inside just imagining him being cared for by other people. I have an element about me that needs to be in control. I have things run my way. I need proof that I can trust others to care for him and that they will put him first.
If I had an obscene amount of money I would open a play gym soley for mentally disabled children and one for adults, that would provide therapy rooms, specialist play workers, one to one sessions, advice and a haven of love and respect, where parents and carers feel safe away from prejudice and stares. It would be open seven days a week as sometimes we need somewhere to go where our hyper children can let off steam and where parents of 'normal' children don't tut and mutter to themselves about the behaviours of our children.
Money does make the world go around. And when I hear millionaires bemoaning their wealth ( and one such celeb - Robbie Williams once famously stated he would rather live on £80 a fortnight dole money than have his wealth ) I want to offer them the chance to give me their money, so that I can use it positively and give it to those that really do need it. I could do a lot with a million, and the lives of so many local children and their families would be improved, even if only by something very minor such as a bubble tube.
I'm keeping everything crossed (and believe me that takes some effort) that I will win the Lotto, as that appears the only way I will achieve my goal. Here's hoping.
