autismmumsdads

Make A Difference..

Posted on: February 24, 2012

One thing that I really struggle to cope with when it comes to A’s Autism is the unpredictability of it all.
We all wish we had a crystal ball so that we could see the future & be more prepared for what life throws at us.

I fully accept A’s Autism although its challenging & hard work at times its very rewarding to see him develop and achieve things we once thought would never happen & this can only continue as he gets older, but at what pace, we don’t know?!

A, is only very young yet, he will be 4 in June and this is a massive year for him – he starts school in September and that is a real worry for me. A, as you know from previous blog posts, isn’t statemented and will attend Mainstream.

I wish I knew what the future held for him at school and whether he will make friends and be happy. A, at the moment is non-verbal and doesn’t socialise with other children the way his peers do, so I worry this may prevent him from developing relationships and being included into school life. I am pretty confident he will gain full time support via a one to one, but will this be enough?

The uncertainty of the future is something that drives me crazy with worry, that sometimes I try my hardest not to think about it and think to myself “well we’ll cross that bridge when we come to it”

I wonder when A, will speak, will I and others be able to understand him? Will there come a point when A, has violent meltdowns and doesn’t sleep? Will he begin to communicate with us in a way that me and you would? Will he drive a car? Will he have children? Will he get a job and have a nice house?

I hate these questions, because even though we never know for certain these sorts of questions aren’t the ones that parents of neuro-typical children worry about – yes it crosses their minds but their children are capable of all of these things, is A?

And then what will happen when he is older and I’m not around anymore? Will he be ok by himself? Will he be able to live independently? I wish I could live forever not because I think A won’t achieve these things but so then if he doesn’t I’ll be around for him, to care for him, to make sure he always has me in his life.

Some days I find myself trying so hard to not think about the future, because the uncertainty of it upsets me, its worries me. I don’t want much from life, I just want to know what to expect, what to plan for.

I wish that the world was more Autism Aware so that some of my worries wouldn’t need to exist, such as A, going to school. But because people aren’t aware, they just assume the worst in people, or laugh at them, makes jokes and JUDGE. Some people seem as though they don’t want to be aware because that would mean harder work for them where its best to ignore.
And some people don’t choose to be aware, not necessarily because they are ignorant but because its not affecting them, so why would they care?

So I’m asking each and everyone of you to please share my blog and share anyone else’s blogs or websites to help spread the awareness and make lives much more happier for millions of people who face these uncertainties.

Its estimated that 1 in 100 people in the UK have Autism, they all have family, a Mum, a Dad, siblings. – when you add those all up that’s a lot of people affected by Autism – and that’s not counting the millions worldwide.

Make a difference & become more Autism Aware.

L x

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5 Responses to "Make A Difference.."

I know how uncertain you feel. But as you said A is still young and you never know what the future holds. Please don’t be discouraged. You are working diligently every day to raise Autism Awareness and I admire you so much for that!
It’s so hard for me to think of K’s future. But I try not to let it discourage me. I enjoy each and every day with him! As I know you do with A.

Thinking about what the future might hold will only lead to worry, depression, anxiety – all of which are negative emotions, which in turn rub off on children far more easily than you might think. The ONLY thing that you can do is be prepared to put A at the top of your priority list for everything, which I know you already do. I’ve explained before about us moving house to get Lewis to the right primary school. I’d do it again if i had to. If you are there for A, and prepared to move mountains to address his needs at that point in time, you can be confident that he will be as happy as he can possibly be, and will lead the best life he can possibly lead.

Hope you able to get statement. Maybe school will have to monitor how A settles in school first and gather evidence.
I know that early years unit helped us with transition into school. They visited L at pre school and helped with the transition visits to the new school.
However, knowing that L hates new environment and sensory overload it was still hugely difficult getting L used to new expectations and boundaries.

I get very uncomfortable thinking about the future, especially as am older mum! Find i am better able to cope concentrating on the here and now. Focusing on getting L settled with the right interventions for as independent a life as he can achieve. There is an eye on the future. Thats what works for me.
Its annoying to have to go out and find the info, no one does it for you! Grrr!
Love your post. We’ll have to blog myself sometime!

My son is now 11 and I still do this. But each year something changes. Something I worried about last year I don’t worry about this year. Things do get better. And some things have stayed the same. I still worry about his future but I don’t worry as much about his present. I used to have no hope and now I do. I am sending up prayers for you. God Bless.

I’m just the same with C, it’s so hard not to worry. Im sure A will be fine at school., kids in Year R used to constantly amaze us and there is such a massive difference in all abilities and socialising at that age, he might not be so different. Make sure you keep in contact with the senco – I used to find those parents who kept on my case got more out of me! Not that I wasn’t doing anything, but if I knew I had a meeting or deadline for a parent it would go to the top of my list of jobs. Sorry, don’t mean to patronise again! Just that if you want any advice or information about life in mainstream school I’m happy to help (having just left being a teacher and senco at a primary school!).
Im sure it will be so mich better than you think, especially once he is settled in! Xxx

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