Living with Tom by Jo Worgan

Written on 14th Oct 2013 by Alex Lowery

• Share

Hello. Today we have a special guest article by Jo Worgan who is a writer for the Autism Daily Newscast. Enjoy!

I had the pleasure of ‘meeting’ Alex a few weeks ago over on twitter. I found his life story and how he helps others through his public speaking to be utterly inspirational and I was fortunate enough that Alex allowed me to share his story with the readers of Autism Daily Newscast. Following the article Alex asked if I would share my story with him, so here it is.

I have two little boys; Stephen aged 6 and Tom who is 5.

I have been married to Andrew for 15 years but we have known each other since we were 15.

Tom was diagnosed with ASD at the age of 3 at our local Child Development Centre. This was not a shock for us as we knew something was not right at the age of 1, and we were lucky enough to have received interventions and support from our local children’s centre when Tom was 2. Therefore over time we gradually came to the diagnosis that Tom was on the autistic spectrum.

We have good and bad days with Tom, his behaviour can be very challenging, mainly due to frustration and anxiety. We try and stick to the same routines in the week and we use a visual timetable at weekends and in the holidays to help with his anxieties. He is verbal and communicates his needs well but he does benefit from ‘seeing’ things as well as hearing them. He is very much a visual learner. He also has sensory processing difficulties and has sensory modulation dysfunction. He has significant difficulties with sensory over responsiveness, under responsiveness and is a sensory seeker, we therefore have to consider these needs in his everyday activities. We do incorporate a sensory diet into his daily life, his favourites being the trampoline, play foam and his sensory den where he will lie on his cushions.

Tom also struggles in social situations when out and about and I have wrote many times about how myself and Stephen cope when out with him, Stephen often refers to ‘blocking Tom’ when he is attempted to hit out at people passing by, we now have a very good Tom ‘radar’ and can usually predict when he is going to do so. We also have to plan out days out, in that we tend to go to places early on in the day when they are quiet and we always have to take Tom’s food with us. He is on a gluten and dairy free diet and would happily live on dry cereal and fish fingers if he could; we therefore always have a small tub of cereal with us. Tom though for all the difficulties that he has a wonderful little boy and he constantly makes me laugh, he is also very affectionate (on his terms) and we do enjoy some lovely cuddles. He has certainly made me see the world in a totally new light.

Living with Tom can be quite challenging and trying to juggle the needs of the whole family can take some doing at times but we seem to manage. Andrew is a teacher at a boarding school and works long hours so it is mainly I who does all the caring and the day to day running of the home. I was a renal nurse for many years and after having Tom I worked one night a week at a local nursing home but as Tom’s behaviour became more challenging and his needs grew I decided that I needed to look after myself in order to care for my boys and so stopped work.

It is only recently that I have started to work again but this time on a totally different path. I work a few days at a local preschool and have recently become qualified. During the rest of my week I enjoy writing for Autism Daily Newscast. I find autism stories of interest and write about them, it is a joy to do.

When Tom was diagnosed I was so extremely thankful for all the support that we received and I remember thinking. ‘What about all the parents out there who don’t receive any help?’ We were extremely lucky as Tom attended a nursery within a children’s centre so there was lots of professional help available very early on. This I know is not the case for many parents. I then thought to myself, ‘why not write about the help and support that we have received as a way to help others’ and so I did. Life on the Spectrum The Preschool Years. Getting the Help and Support You Need. This was during the summer holidays last year, I would sit with Tom on my knee having a cuddle while typing away on my iPhone, I think I wrote most of the first draft on my phone. I really did not know at the time just how many people would read it and what impact it would have, I was very shocked to receive kind comments of support on twitter.

After I had published my book I still had the urge to write, I found writing the book to be very cathartic and certainly cheaper than therapy. So I decided to start a blog, which I did on my Goodreads author site. My blog was then picked up by Glipho, a social blogging platform and so I started to blog for them too. I have been blogging about my family now for almost a year. My blogging also led to the publication of my second book, My Life with Tom, Living With Autism. The Blogs, Volume One, which is a collection of all my blog posts. My Auntie gave me the idea one day; she said ‘I would love to have a book containing all your blogs’, so I thought why not.

Life at the moment is good for us. Tom is where he needs to be at a specialist ASD School and is making good progress there. Stephen is such a caring and understanding older brother and I am truly blessed to have him. I do worry at times that I do not spend as much time with him as I should due to Tom’s needs but we make the most of the time that we have. We have treat nights at the weekend when Tom has gone to bed and in the holidays we book Tom into a local holiday club for disabled children a few times in the week so this gives us time alone with him. Stephen is dinosaur mad and want to be a palaeontologist when he grows up, we call him put little dinosaur explorer.

I now find that I also have time to myself. I am currently writing my third book which I hope to have published early next year which is about parent carers of autistic children, the book voices my own opinions as well as those of 100 parents who completed my online survey for the book.

It has to be said that I have a lot to be grateful for. I will leave you with the opening quote from ‘Life on the Spectrum’ as this sums my Tom up. I would not change him for the world.

“I see autism as having many different strands. All of these strands are beautiful. They are all the colours of the rainbow intertwined intricately into the child. If you try and take away the autism by removing the strands you also take away parts of the child as they are attached to them. They are what make them who they are. However autism is only a part of them, not the whole. It does not define them. This is for my Tom”

Unless otherwise indicated, all materials on this page are © Alex Lowery Speaks About Autism. Please do not reproduce, modify or use for any purpose without the prior, written consent of the author. If you are interested in using an article on your blog or in your magazine, please contact us.