Last week I asked the question, ‘How has having a child with autism changed you as a person?’ The response I got was excellent, and I have summarised some of those replies in the post ‘Changes’. But they were too good to summarise, so I decided to share them all over the course of the next week. I will shortly transfer them all to the blog page also called ‘Changes’. Thanks again to everyone who sent their intelligent, moving and inspirational comments. It’s a pleasure to share the thoughts of Ackers72, Michelle and Sarah today. More tomorrow.
It took a long while to accept the diagnosis that was given to my son, probably because I didn’t understand fully what Autism/ASD/Aspergers was. A great friend works with children and adults with learning difficulties and has helped so much with me learning what it means and how it affects my son and me.
It seems as soon as you mention Autism people automatically think ‘Rain Man’ and maybe the film did brought to light misunderstood behaviours but it’s so much more than that. Without my friend I would still be struggling to come to terms with it all but now because of her, me and my son have a fantastic relationship and I embrace the differences that he has from other children. We incorporate lots of plans, strategies and focus on what we enjoy doing and using that to try teach my son while he plays. We go away many times to many different places and even though at times it’s difficult we both learn from each other, learn boundaries of behaviour and how behaviour changes those around you.
Its been a long road but the journey along it is continuing and getting more interesting. My life has changed for the better in that i accept and understand there are many different ways we can all learn not just people with A/A/A and that my sons time with me is far more important that anything else I could possibly do.
There have been two threads of change for me since we became aware of our son’s disability. One is practical and has been very difficult. Not being able to work (much) has totally put us on the back foot financially. We are miles behind our peers in terms of financial security and will continue to be. Also as a family we are very restricted in our activities (we have two NT children as well). I become more aware as the kids get older how intrepid other families can be and how spontaneous. My other kids miss out on a lot and I worry they’ll get more resentful of that as we go. It’s not that we don’t do things – the ASD is relatively mild – but we long ago gave up cafes, children’s theatre, biking, noisy places, anywhere you have to walk more than 10 minutes and of course as adults we hardly go out as babysitters are hard to come by.
The other way I’m changed is emotional and its a much happier story! Despite the sadness, particularly around diagnosis time, its been a time of huge growth for me as a person. I have totally turned around the way I look at parenting my children. I’m so much more open-minded. I now pity those who are obsessed with exam results and thrusting careers for their children and I’m focused on the ‘happy’ which is such a good place to be. I’ve also met some really inspiring people in this ‘other’ world and hopefully will continue to do so. My son’s differences have set us apart for sure, but I don’t see it as a bad thing, but a hugely enriching thing.
I’m very lucky.
Where does one start?
I am stronger now than when my daughter was diagnosed back in 1995 – L’s paediatrician didn’t recognise me a couple of years ago when I turned up at a meeting, advocating for another parent who’s child was having problems.
Never in a thousand years would I have approached the head of children’s services at our local council before my children were diagnosed – no way!
Finding new ways to do things and appreciating the quiet times have become so important.
Before the children were born, the idea of a five point plan and a multi-disciplinary meeting to give L a blood test would have been laughable.
So now both children are in their 20 s and the light at the end of the tunnel is blinding me, you would imagine that we’d be sitting on our deck, a glass of something chilled in our hands?
Well you’d be wrong, we’ve just signed up to be foster carers with our local council, specialising in – yes you’ve guessed it autistic children!
Having autistic children has changed us, dramatically and I hope for the better – but and this might seem contrary to everything I’ve said and I asked the children – if there was a cure, would you take it? We all agreed that 1. I would have given it to the children at diagnosis 2. They would take the cure now if there was one and 3. It has been a long and difficult road!
The last thing I’ve found is that I have absolutely no filtering system now and I’ve lost my ability to chat about inconsequential things like the weather or Kardasian’s shoes (whatever the heck Kardasian is, thought they were a member of the Star Trek universe!).
All the best.