Mother-of-three, Niamh Deane speaks about the challenges of helping her children navigate the world of autism/ASD
Being a mother is not an easy job. There is no handbook, there are no holidays, very little sleep and you’ll never finish another cup of tea! On the other hand, there are plenty of smiles, kisses, hugs, laughter, messy play, and much, much more. Being a mother is my biggest challenge but thankfully I love a good challenge.
I have three beautiful children, all of whom are diagnosed with Autistic Spectrum Disorder. Autism or ASD is a neuro-developmental disorder that affects approximately 1 in every 100 people in Ireland (more information is available from Irish Autism Action). For my children their Autism displays differently to each other but there are similarities with all three. They have a sort of social blindness and can appear that they are indifferent to their peers but they just don’t process the world around them the same way as other children. Each one is smart, creative, has a wonderful sense of humour and is brilliant at music. They are seven years old (diagnosed at five), six year old (diagnosed at six) and four years old (diagnosed at two).
THE SAME DIAGNOSIS, DIFFERENT EVERY TIME
Many people ask me what are the signs of Autism. I’m not an expert in Autism, just in my children’s Autism and as such it is a really hard question to answer as each child’s Autism is different. For my eldest, we knew something was happening when he started having full conversations with us by the age of two (this is not seen as ‘normal’ behaviour in a two year old) but being my first child I did not think anything past ‘jeekers he is smart’. He was also difficult to manage and we could hardly take him outside. He could be very aggressive and kick and hit without any warning signs. He had no sense of danger at all. He was a seriously fussy eater. The list could go on and on.
By the time he was three, his sister was two and our newest arrival was born. Our new baby was born a little early and had issues with breathing that are still ongoing. He needed constant attention so we asked our family GP for advice about what to do for our eldest child and they suggested getting an Educational Psychological Assessment which we did when he was just three and a half. The Psychologist told us in her report that our son had a genius level IQ and suggested with seek an Assessment of Needs. At the time the Assessment of Needs process was not great and at the end of the lengthy assessments they could offer us no help so we sought private help from a Psychiatrist who diagnosed him with Asperger’s Syndrome. From that point our life has been one long learning curve into the world of Autism/ASD.
The hardest thing for us had to be accepting what we were being told about our little boy and not being afraid to embrace him for who he is. After that it became easier as we had some sort of understanding of his behaviour. It can be a struggle on a daily basis especially if all three are having very ‘Autistic’ days together but you have to take everything as it comes. In my case, that mean trying not to control every little detail. We make only loose plans as we have learnt that any plan set in stone will be broken, Murphy’s law and all!
There are things that our children need that other children don’t, like Occupational Therapy. Unfortunately, we’re finding it very difficult to get our local health provider to supply this and like many other families, private OT is just not an option for us.
THE CHALLENGE OF HOME-SCHOOLING
It can be a constant point of stress for families of children with any sort of ‘special need’ to ensure that their child/children are getting all the services they need. One of the hardest struggles for us was finding the correct school and we tried many options which didn’t work. This ultimately led to our decision to home-school. Our eldest son in particular was quite traumatised from some of his experiences in school and it took us months of careful work to get him to a point where he was confident enough to leave the house again.
Throughout it all I still had to home-school to ensure none of the three fell behind and I can honestly say home-schooling is seriously difficult and as I have full admiration for the mothers and fathers who home-school for longer than one school year. We were very fortunate to get our children into the most wonderful mainstream school where they are very happy. We have a battle every morning ensuring we get out in time as we now have either a 45 minute car journey or a two hour bus journey to get the children to school. They’re not fond of the journey at all and it can add a lot of stress to their day. They have of course daily struggles in school but they are met with dignity and compassion and are safe. Safety is vitally important for any parent for their child.
In our little girl her Autism displayed very differently to the boys. She wasn’t aggressive, had buckets of empathy and was in general a very happy little girl. She was assessed as a matter of course as our other two children were diagnosed and the team who assessed our youngest child didn’t want to miss anything with our daughter. As we went through the assessment we began to see what the team were seeing and although it was a bit of a surprise to be told we had our third child diagnosed with Autism we welcomed any and all information the team had in how to best manage our daughter’s Autism.
THE BEST ADVICE: SEEK HELP
The best advice I would like to give anyone who is wondering about their child is that you shouldn’t wait. Seek help. Go to your GP or Public Health Nurse or go through your child’s school. There will be a waiting list and it will take a while but don’t be afraid to ask for a second opinion if you are not happy. You must push and keep pushing for the best for your child.
A child with Autism can do anything in life. They can make friends, use their imaginations, express their emotions (albeit in their own unique way), go to school/university, get degrees/masters/doctorates, fall in love, get married and have families. There is nothing they cannot do just like any other child given the correct opportunities in life.
Autism does not define my children; it is just a part of who they are.