A worthwhile journey

The below is something I have submitted for a website to support parents of autistic children.

You don’t need to know everything about autism.

Dear Fellow Mum on the Autism Journey

My name is Laura. My son Clay is 16 and was diagnosed at two. Going through all the paperwork I’ve kept in preparation for the NDIS process I found a copy of his original diagnosis by a paediatrician in Mackay. One word was written on a form for Centrelink. AUTISM! It was dated 3/3/04. I had a new baby born on 24/2/04 and my darling son with me. I was given one word and nothing else. No information, no advice and certainly no details of what steps I could take to help my son.

When Clay was born, right from the get go he had issues we now know are part of him being autistic. He couldn’t latch on while breastfeeding. He was the quietest, happiest baby though. At six months he struggled to transition to solids. We had to attend a feeding clinic for me to learn how to introduce solids to him. At this clinic there was a speech therapist, an occupational therapist and a dietician. They must have seen something this new Mum missed as they also referred me to the occupational therapist where I was taught to teach my son how to play. After six months of OT it was recommended we see a paediatrician. Clay was completely non verbal at twelve months but was walking. He didn’t point. He spun wheels on his car. He screamed if I did a u turn while driving. We loved his “Clayisms” as we called them.

I can honestly say hand on my heart I have never felt devastated. Walking out of Mackay Base Hospital all I could think was how can we help our son. I heard the paediatrician say he may never talk. He may never live independently and other similar statements. I didn’t worry about that. I knew I was a person who didn’t give up and I believed in my son.

We moved back to Brisbane to be close to better support services both professional and familial. We sold our house to fund his Early Intervention as HCWA was only introduced when he was seven. We lived with my parents for three years for emotional support because there were times when we needed it. These were choices we made not sacrifices.

I look back on the decisions we agonised over and know we chose a wonderful path for our son. He talked. At his fifth birthday party he said his first sentence. Seven words that made our jaw drop. “Hey Dad have you seen my scooter?” We celebrated like he’d won the Nobel Peace Prize. We celebrate all the small and large milestones. When he showed me he could tie his own shoelaces last year after practicing with a beautiful teacher aide for awhile I burst into tears of joy.

Photo title: Clay receiving an award from the Governor December 2016.

Early on in Clay’s journey I realised I do not need to know everything about autism. I just need to know everything about my autistic child.

Fast forward 14 years. We’ve insisted from day of diagnosis for a blend of mainstream and supportive education. All IEP goals were non academic. Clay has dealt with severe bullying. I’ve learned to never apologise for autism. I’ve developed a tough skin. Clay has a passion not an obsession. No matter how tough it is for you and it is tough remember your child is doing the heavy lifting.

Clay is happy and growing into a confident, charming and unique individual. He attends TAFE one day a week and will graduate next year. We have always advocated for our son. With our help he has a successful part time business cleaning wheelie bins. He has two employees, a Facebook Page, a professional website https://mmg-va.wixsite.com/claysbincleaning and will be introducing a corporate uniform shortly. Once again this happened because we believed in our son. He tried to get a part time job. We knew he was capable but unfortunately the recruitment process is not adaptive for neurodiverse people. We helped him and his business in three short months is very successful.

If I could recommend only two things it would be

1. Believe in your child

2. Find autistic adults. Follow them. Listen to them. They are our trailblazers.

With love From

A Mum and passionate Advocater

Laura Lewis

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