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Your son has Autism…

Posted on: March 10, 2012

I’ve been thinking a lot lately about the future and what it means for us as a family. As I’ve mentioned before I hate the thought of unpredictability – of the unknown.

So I thought I’d take you all back to the beginning – when A was diagnosed..

For a few months before A was first referred for assessment I knew something wasn’t right. He was coming up to the age of 2, not talking or making any attempt to, didn’t bother with other children, didn’t play with his toys, didn’t answer to his name, didn’t make any eye contact….I made excuses for all of these things though, I even at some points lied and said he did do the things he didn’t.

I know I was wrong to lie but in a way I didn’t want to accept something was wrong – because surely that would mean I was at fault?

A was referred to a centre near to where we live by his health visitor who cited the reason as being very limited eye contact – I denied this saying his eye contact was fine.

Luckily for us our wait wasn’t long, took about 5 months before A was officially diagnosed – he attended an assessment nursery for 2 mornings a week and underwent lots of observation there, at home & at his private day nursery.

By the end of the assessment period, I’d done my research and fully believed A was Autistic. I found it so hard in the weeks leading up to his final ADOS test, where they would give us an answer whether it be.. “Yes he is…” “No he’s not…” or “We don’t know yet…”
I had reams and reams of paper filled with questions in case they said he wasn’t Autistic, I was going to say well why does he do this and why doesn’t he do that?! I was worried sick that they would say he didn’t have Autism because I’d already accepted that he had and I needed someone to tell me I was right.

That by no means prepared me for the words though –

“We have gathered our information and combined with the results of the ADOS test we agree that it is all consistent with a diagnosis of ASD.”

It wouldn’t of been any less of a blow if she had punched me in the face – I just started to cry – relief and realisation – grief and happiness.

Our journey has only really just begun – Will it get easier? Will it get harder? Will he talk? Will he be able to live on his own?

I can’t answer those questions but what I do know is I will try my hardest to ensure A has the best life possible, the life he deserves, the life he’s capable of living.

Autism isn’t the end of the world its just the beginning of a new one.

L x

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6 Responses to "Your son has Autism…"

I am still asking myself the same questions as above but am coming to terms that Izzy hasn’t changed just because she has been diagnosed, she is still Izzy. The unpredictability factor is something difficult I am trying to deal with as I myself have OCD and like to be in control at all times where possible, 1day at a time.

I know exactly how you’re feeling. The burning questions that have no answer. I find the uncertainty the worst. But… my only advice is to put all my effort and focus on the now! …just try not to look too much into the future but simply take one day at a time, brush off the difficulties and by all means, celebrate every small victory like it’s major! 🙂

Hang in there!
Best, Ragga

thank you for sharing this blog with all of us. Your honesty your passion, your love–they all come through in your superbly crafted blog. All the best,
Dr. Sheely

I also totally understand that feeling. I completely refused to believe anything was wrong for a long time! I think deep down I knew, but I just didn’t want to admit it. They warned me at pre-school and I lied to myself and said he would grow out of it. At Infants they were seriously concerned when he started and by Year 1 they suggested he might be Dyspraxic – this fitted really well and I clung onto the fact it could be something like that, that might not have such an impact on his life. However, before we even got to assessment time, a Doctor had said she thought he was ASD. When we got the official diagnosis, even though I had really known all along, I was devastated for him. I was a primary school teacher – and SENCo at the time and I knew the impact this was going to have…was already having on his life. I cried – a lot and grieved for the life we had all hoped for him. I felt helpless, like I had no control over anything and ultimately that I had failed him and everyone. I felt like this for a year, and suddenly I knew that I had give up work (i was so lucky to be in a position to be able to) and in giving up the job I adored and the one thing that often kept me sane I finally felt like I had some control over the situation. I was the one able to take him to hospital appointments, I didn’t have to rely on others. I could help establish his routine and work on some of the OT targets and being able to do this gave me some hope again – that although I couldn’t change anything, I could at least be there. It’s nearly one year since I gave up work, and I miss it desperately, but there was never a choice to make, he had to come first. In this year he has been diagnosed as ADHD and is now on anxiety medication after developing such low self-esteem and suicidal thoughts. It’s been harder than I ever thought and the future scares me, what else might be diagnosed, how much harder it might become for all of us. I try to be positive and think about my godson, who is 15 and has Aspergers and how he has come through the really difficult times and is now a gorgeous young man, with a passion for cars and working part time at a garage.
So the fight continues for him, to get the right school and to help him however we can, it’s an exhausting battle and not one I ever wanted, but one which we shall continue to fight…!
Thanks Lauren for helping us realise we are all in the same boat, no matter which part of the journey we are on
xxx

We go from one day at a time to one moment at a time when it gets too much. Thank-you for sharing your journey so beautifully 🙂

Nothing quite prepares you for those words. I too, cried when I heard ” your daughter has Asperger’s”. Tears of relief, sadness, grief.

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