Monday 11 June 2012

My Life With Autism

We are always happy to publish guest blogs from our supporters around the UK. These are people living with autism who want to share with you a little about their life. Here Julie-Anne talks about her son Paul: 

"Paul was born in 2001 in Antrim hospital N.Ireland after a horrendous 30 hour labour and an emergency caesarean, he then spent the first week of his life in the special care baby unit with congenital pneumonia and a heart murmur. He then was taken back  into hospital at 4 weeks old with severe chest and breathing difficulties. At one point his heart stopped and he had to be resuscitated.

Paul then spent the first 7 years of his life in hospital on a 3 monthly basis with severe breathing difficulties. He didn't walk or talk until he was 2 years old and was allowed to start nursery at 2 to overcome and help with this. We were living in N.Ayrshire at the time.

Paul had a speech therapist until he started p1 and was always different from other children as he was very reserved and easily upset.

We moved to West Lothian when Paul was half way through p1.

Paul was constantly getting into trouble when he was at school for either not joining in with activities or becoming upset and having tantrums and we never knew why. In p4 Paul was referred to the Educational Psychologist on my request for observations, I was told that he was fine and there was nothing wrong with him and he was referred to a Speech Therapist to help with his language skills.

One day when Paul and I were at the Speech Therapist she asked me if I would mind if she referred Paul for testing as she thought he had autistic traits. I was very surprised and shocked at this as my idea of Autism at the time was the film Rainman. However I agreed to testing and a few months later after several visits to different doctors and specialists and a lot of form filling Paul was diagnosed with Asperger's.

I was very shocked and a little relieved at this as I now knew why my son was different from everyone else but I also felt like it was a case of 'here is your diagnosis now go and get used to it'. I would have preferred some support as I have no family near me.

The school when they were told of Paul's diagnosis took it with a pinch of salt and never offered us any additional support for Paul and told us we weren't entitled to any.

I then discovered a support group for other parent's like myself and discovered that yes we were entitled to help and support and I have been battling ever since for this.

In the past year Paul has overcome a few educational obstacles with the help of Autism Outreach and a few meetings with the Outreach team, the school and myself and  is now allowed  to use a laptop for extended writing and is also allowed to stay indoors at playtime if he wishes.

Paul is now preparing for his final year at primary school as he will be into p7 after the summer and has been identified for an Enhanced Transition and so the school, the outreach team and myself are working together to ensure we do all we can to help his Transition go well. I find this much easier than a few years ago as we are all working together on the same path to help Paul be all he can be.

I am hoping he get's the help he needs when he starts at the high school and he continues to do well."

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