Today is Autism Awareness Day at the beginning of what is Autism Awareness Month.
Today is also the three-year anniversary of when I officially gave up work to be a full-time mummy to my boys and also full-time carer (to want for a better word) to Bruiser.
It’s not something that we planned on happening. I was all set to go back to work, just like I did after having Wriggler. I was currently on sabbatical as maternity leave had finished and I had a few issues about my days and hours to confirm with my employer while I awaited extra hours in our local nursery for Bruiser.
Obviously I was filled with dread about my impending return, I was also filled with a lot anxiety about whether or not this was the right decision to make. Bruiser had just started showing more signs that something wasnt right. He’d always been a different baby compared to Wriggler and other children that we knew but we couldn’t quite put our finger on it. Autism had been mentioned on occasion but, we were ignorant to what Autism really was and what these odd behaviours really meant. But just before I was to make a final decision about work, Bruiser stopped talking. He stopped walking. He stopped crawling. He couldn’t do anything. Our days were filled with worry, frustration, screaming and crying amongst the various calls to his consultant and trips to A&E thinking something was wrong with his arms and legs.
I didn’t go back to work. We made the decision that Bruiser needed me at home every day. The whole family needed me to be at home. Everything was stressful enough without throwing my work into the equation too. So on Friday 2nd April 2011, I made called work and told them that I wouldn’t be returning…
So began a new era, one that would change us all, as individual people and as a family unit.
It was only on this day last year when I realised the ironic significance of the anniversary.
We don’t have a definitive diagnosis yet for Bruiser. We are getting closer. When we started this journey we were told that we might not get one if at all before he was four to five years old. Things have progressed though.
Obviously TAC meetings, Speech and Language Therapy, Messy Food play therapy and more recently Occupational Therapy and Communication and Interaction Therapy to name only a few have helped Bruiser. First and foremost though, it has been our patience and dedication as parents that has made the changes to our lives for the better to help him.
I have spent countless hours on Makaton training courses and practising at home teaching Bruiser Makaton. Together with the knowledge I have gained on Speech Therapy courses, Bruiser can now communicate (to an extent)!!
It can take Bruiser over an hour to eat two chicken nuggets and five chips, or one yorkshire pudding for a meal but we sit with him and stick it out every meal time so he eats ‘something’. That’s an improvement on one chip in an hour over a year ago!
We’ve spent countless nights sitting by Bruisers bed for hours at a time getting him to sleep, only for him to wake half hour later so we have to do it all again. I can honestly say I got more sleep when Bruiser was a new-born baby, feeding every two hours day and night than I have in the last eighteen months! I have almost perfected the art of falling asleep while walking 🙂
Our lives are governed by routine, preparation and careful planning, always being five steps ahead all of the time.
We spend time making sure his drinks have no bubbles in them, his cups aren’t wet, his toys are in their places, his bed teddys are in the right order, that he doesn’t get wrinkly in the bath. We make sure its not too noisy for him, that’s it’s never too light or too dark, too hot or too cold.
Yes, today is Autism Awareness Day, and April is Autism Awareness Month. But for us EVERYDAY is Autism Awareness in our house.