THE BLOG
29/11/2013 07:01 GMT | Updated 28/01/2014 05:59 GMT

Life with Tom on the Autistic Spectrum

I am a mum to two young sons, aged very nearly seven and five years old. My youngest son Tom has Autistic Spectrum Disorder (ASD). Having him literally changed my life. However this is not a doom and gloom story, life changed that is all. It's not all bad.

My husband, Andrew, and I knew that something was 'not right' around Tom's first birthday. There were lots of little signs, such as very little eye contact, head rolling and hand flapping, delayed speech and not being able to cope and becoming distressed in busy environments. He would run into people and bump into them with his head. He still on occasions does this but I now know the signs to look out for now and can 'block him' as Stephen calls it. During this time in my life I just kept thinking to myself that something was 'not right', I suppose because I could compare his behaviours and developmental milestones to those of Stephen, his elder brother by sixteen months.

Over time we gained help and support from our local Children's Centre and other parents who have children on the spectrum. By the time Tom was three we had a diagnosis of ASD.

I have 'up and down' days as that is the nature of Autism but I now have a strong support network both online and locally and this I feel is vitally important as support is everything. I am able to share the good and not so good days. For example I can share that Tom had not such a good day out in town as he kept trying to hit people and then had a 'meltdown' on the bus. I can describe all of this to my friends and family and I know that they will understand and not judge me.

The very early years were a struggle with Tom as we had to learn about Autism ourselves in order to support him. We had to find support and interventions for him as well as learning all about visual support systems and adapting home life. Tom has very little sense of danger and when out and about with him he has to be constantly watched, I dare not let go of his hand. This means that days out need to be carefully planned and most importantly that the Aquarium, Museum etc. that we are planning to visit is open. There was one occasion when we went to visit a local Aquarium but when we got there it was closed. This took a lot of explaining. In Tom's mind we were at the Aquarium, that was where he was going, it was on his visual timetable so why could he not go in? Luckily this stressful situation was diffused by the promise of a visit to the local Motor Museum which luckily was open. Life with Tom has been turned upside down; you have to constantly think of how he sees the world.

He likes structure and routine, he is verbal but visual symbols help him to better understand instructions and his day. He has trouble with sharing and changes to routine. He still needs help with washing and dressing and at the moment is still in nappies (a whole other story) but we are slowly getting there with 'the big boy pants'.

It is this journey really and the people that I have met on the way that have completely changed my life. I now have a totally different outlook. I was a nurse for many years working full time hours but I now spend my time looking after my boys and helping to raise autism awareness through my writing.

I am also incredibly fortunate to have a supportive husband and family and Stephen is an absolute star. He is very understanding of Tom and very caring towards him. He is forever saying, 'he can't help it mum, it's ok, he's autistic'

So life has most definitely changed but you just accept and go with it. There's no other choice really is there? One thing's for sure, I most certainly have a lot of stories to tell.

Jo

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