The word Autism spelled on blocks

In the beginning

My grandson was diagnosed with Autism. He was seven and a half at the time. The diagnosis was not a surprise, but it was still something to wrap our minds around. My daughter told me she had a little cry – of course she did, we all did. Jacson was also born with Down Syndrome. My daughter and her fiancé work hard with him and have the highest expectations for his abilities. This hasn’t changed, but perhaps the goal posts have since the early days.

Having a child is a culture shock like no other. There is no rulebook, no checklist, and no manual. Most parents get over the shock of the birth itself and then try and work out what their new-normal life is.

Imagine trying to work out what the new ‘normal’ is? There are things that every new parent can relate to, such as learning to breastfeed, deal with the endless stream of visitors and figuring out what your new day-to-day life will be. These things are complicated by the diagnosis of a ‘disability.’ I use quotations as surely words like ‘disability’ and ‘normal’ are just constraints society place on us. It was a period of chaos and information overload, in addition to learning to live with their perfect son.

And I felt utterly useless and unable to help. This was not what being a Nanna was supposed to be like. How could I offer all my experience and advice, when I had not experienced what they are before? We were all thrown into the deep end.

And we learnt to swim.

My daughter is amazing, her fiancé is amazing. They didn’t plan this challenge, but they took it head-on and ran with it. Like any couple, they have their ups and their downs, but no-where has there ever been the thought that it was too hard. Not once was it “why us” or “why him”. He is Jacson, he has Down Syndrome, he has Autism. He is gorgeous, funny and loving. We wouldn’t have him any other way.

My drive

After Jacson was diagnosed with Autism, I started to research. I wanted to know exactly what Autism was. So, I read, and read and read. It was a mass of information and at times it was exhausting.

I found a publication by an American Architect and, as a Building Designer, it was my “ah-ha” moment.

So, I researched and researched and researched. I found my purpose, my “why?”, my passion. This is my future: to fulfil my grandson’s, and those akin to him, in all the ways I know how.

 

 

 

 

 

 

 

 

 

 

autism, autism friendly, Churchill Fellow 2017, Churchill Fellowship

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