Wednesday 8 July 2015

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!

2 comments:

  1. Great blog. I've added you to my blog roll.

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  2. Thank you Louise,the more people understand autism the better the prospects for our children!

    ReplyDelete