Living peacefully with Autism.

So often I hear of parents, battling with the Education system,the NHS or the Welfare benefits system to get the right provision for their child. It really is a struggle, an exhausting one, which,in the most extreme circumstances can break up families or cause extreme stress and mental health difficulties both for the parents and their Autistic child. It can be a very hard existence,the world hasn't yet caught up with what it means to be autistic. Parents like me are still educating them!

Nevertheless, autism is  common, I see it about me all the time.Any parents of an Autistic child can spot it a mile off and so often it has been undiagnosed for years.Only now are some parents beginning to recognise autism in themselves of their partners,following the diagnosis of their child.

There is a poem about coming to terms with your grief following the realisation that your child is disabled. It has a very clear message that the journey you will find yourself on will be no less joyous.Yes it will have its struggles, all journeys do, but it will have its exhilarating points too.

I've learned that the key to living with autism peacefully and with acceptance is to change yourself.Change your own perceptions of what is normal and suddenly life gets a whole lot easier and richer

So what if your child doesn't sleep in the day,doesn't do their teeth, only eats mars bars and rarely bathes?None of these are life threatening.I would much rather have that than watch my child die from a terminal illness before me,being unable to do anything about it.

I want my children to have happy and fulfilled lives, and whilst for two of them that might mean being out everyday with friends challenging and stretching themselves continuously,for Google things move much more slowly.

I have no expectations that he will be ready to leave home at 18 or go to work, or drive  but I won't be putting pressure on him to do those things until he is ready! That doesn't mean that I think him incapable of doing great things.I know that he has the capacity to do whatever he sets his mind to!He amazes me with his intelligence and eloquence.

With transition to adulthood come further battles to get ESA or independent living or support-after all it's not the responsability of the parent anymore ,or is it?

Fighting a broken system causes heart ache and stress.Once we as a family took back control and stopped relying on the 'support' offered by the system, a weight was lifted off us.

My role I think will be to continue to facilitate my son,to stretch him without pushing the boundaries so that he suffers from mental health, to offer opportunities and to put people in his path who can offer support if he needs it.

Life will not all be roses but if you concentrate on the now then the worry of what lies ahead disappears.Similarly any guilt for what may have happened in the past,goes away. You did what you thought was best for your child at the time.

I read this article this week ,very wise words from a parent who has reached the same part of the journey as me.It's worth a read!

We only have one life,it's our choice how we choose to live it!

Into the Future - Uncharted waters for Aspergers!

One of the reasons I blog is to remind myself just how far my son has come since we began home education.

 Only months ago he was afraid to leave the house or had a meltdown if I showed signs of leaving (even to walk the dog) all because he was afraid that a high speed jet was going to crash into the house. It sounds extreme, but when you have sensitive hearing then the sound of a jet passing up the estuary (which has a tendency to make you jump out your skin) must be like Chicken Licken and the sky falling in! That went on throughout the winter months, I was stuck in the house and my only respite was when my mum came to babysit each week so I could do the weekly supermarket shop.

This morning I have popped out to do the shopping leaving him happily at home and yesterday I went to an National Autistic Society meeting and he didn't bat an eyelid.We haven't forced him to go out, we haven't laughed at his phobia of planes, instead we've looked at why the jets need to train. Funnily enough they didn't worry him when we were on Anglesey this year because RAF Vallee was nearby and he 'expected them' so it appears to be fear of the unexpected.

It was the jets which led us to introduce ear defenders which he now takes everywhere with him, we have also set up emergency arrangements for when I'm out. My son never answers the phone or the door so we have an old mobile phone on standby and he knows if that rings it can only be me. We also have a list of important numbers next to the home phone and for additional security have programmed them into the mobile so that if he's anxious he can ring me. He has only done it once to see what time I was coming home. 

All theses skills will I hope help him to live independently as an adult. I suspect he will need support but at least we will have some idea because of our observations now, of the support he needs.So many people believe that an obviously  intelligent child with Aspergers can be self sufficient. To an extent they can if the right provision is in place.Sadly all too often it is not.

I am teaching my son to be aware of his difficulties and to ask for help. I've mentioned before that we currently have issues with  food. He is eating enough but if I go out he just sits there until I come home rather than get himself something to eat.The other day I made up a packed lunch and put it on the side before going out. I told my son to help himself if he felt hungry. Sure enough when I came back he had eaten - a useful tip from another mum who has been there before me! 

So things do change, sometimes they get better, sometimes they're just different and you have to set about learning again.One thing's for sure, if your child is happy, and your family is happy then you are using the right strategies and your child is less likely to have mental health difficulties in the future.