Families winning at life with a child who has Autism- Rex & Henry

In this series we will be meeting some amazing families who have embraced their child and their autism wholeheartedly. They are passionate about spreading the word that being diagnosed with autism does not define your life. Although there are indeed challenges along the way – the positives out way the negatives in abundance.

Please meet Tara Murphy. I first met Tara over ten years ago when we were teaching together in a Melbourne school. Although we haven’t seen each other for years, we have been connected though our social media channels and our passion for celebrating unique differences in children.   Her family has been touched by autism, or as they like to say….celebrating Neurodiversity. Tara has recently been invited to join the Perth Autism School Advisory Group. To say that this family has embraced this diagnoses whole heartedly, is indeed an under statement!

Please introduce our readers to your amazing family-

We are a highly energetic family of five.  I am a qualified teacher and my hubby Chris works FIFO(fly in fly out) as a controls engineer in a copper mine.  We have three cheeky little men who are the centre of our world. Rex (7) is an expert at Lego, numbers and is currently a huge fan of Dr Who. Henry (5) knows more about cars than most adults and dreams of becoming a race car driver. Sammy (3) is personality plus and can charm a room in the blink of an eye. Rex and Henry also have autism.

How old were your sons when they were diagnosed with Autism?

Rex was almost 6 when he was diagnosed.  Henry was diagnosed first at age 3.

Many parents say they knew their child was Autistic – was this the case for you & how did you know?

Rex was initially diagnosed with language delay and attended a language development school until the end of year 1.  Looking back there were so many indicators.  Rex would line up objects, was incredibly literal and wouldn’t really engage with adults or peers.  A lot of it we put down to him being a boy, being younger than his peer group and later, after being diagnosed as academically gifted, we put a lot of his behaviour down to frustration.

Henry presented differently.  He developed quite typically until 16 months of age than lost a lot of his skills and language.  He was incredibly sensory.  Would lick everything, (slides, trees, passers-by), and had little to no play skills.  He would flap and spin and fixate on things that he liked.  Initially we investigated his speech, as we had already been down that path with Rex. But we always had this sense that something was different and needed to be investigated.

Can you share with us a bit about the way you dealt with the diagnosis-

With Henry I went in to manager mode.  I wanted to know what to do, where to access it and really just wanted to get the wheels in motion. It was a bit of a readjustment period and I think it’s natural to feel a bit sad when you first find out. It was hard to know what the future would hold and, as we had never been down that road before, there were a lot of questions.

With Rex there was a sense of frustration.  Rex is incredibly smart but his sensory and social issues meant that he was beginning to have a few troubles in the classroom. It became clear to us that in order for Rex’s needs to be understood and his education to be catered for effectively, schools were going to require a diagnosis. A reason for his quirks.  Having been through diagnosis with Henry, we knew that Rex met the criteria.  As a teacher though, it just felt really uncomfortable that his needs couldn’t be catered for unless he could be placed inside that box.

Autism does not define my children.  It is just a part of them.  They are different, not less and I think I began to worry that they would be faced with a deficit model of education.  I’ve always been a big advocate for diversity and acceptance, but becoming a mum to some exceptional children really lit a fire in my belly.

How has Autism affected your life?

We attend a lot more appointments than I ever thought we would have to! Speech therapy, occupational therapy, social skills groups. Every play date has to have more thought and organisation put into it than I ever anticipated.  Sometimes it’s easy to resent how easily other families can attend parks or birthday parties, but each time we reach a new milestone, no matter how small, it’s a celebration.  Little things don’t pass you by as much, you start to notice every single accomplishment.

It’s expensive too.  Swimming lessons are all 1:1 for safety reasons.  Day care was Autism specific and required a 1 hour round trip. Schools are ‘infiltrated’ – I’m that parent! Support teams are co-ordinated, parents of peers are educated and the paperwork is never ending.

It also grows you as a couple.  Apparently the divorce rate of parents with special needs children is incredibly high.  We’ve been incredibly lucky.  Chris and I are each other’s champions.  We’ve attended Autism workshops together, read books and talked through all our highs and lows.  I could never have asked for a better person to travel this journey with.

What are some things your sons have taught you about the world?

Just because it’s different, doesn’t mean it’s wrong. I used to read all the parenting manuals trying to get everything right.  It made me miserable and I felt like I was failing.  Then one day I figured it out, I’d been reading the manuals for a Toyota, but I was driving a Ferrari.  After that, the books went away.  I took the boys cues instead.  I found new mentors and I relied more on my gut.

My boys have taught me about a joy so big that it builds up in your body and bursts out as a flurry of energy or a flapping of arms.  They have taught me about unbridled passion and a hunger for knowledge that many of us search years for.  They have shown me the beauty in the little things, the whispered conversations before they sleep, the fleeting glance to share a joke and the touch of a hand to seek connection.

They’ve taught me a lot about others.  People are by nature, curious.  They want to understand and they want to know why.  We embrace our differences and celebrate them.  Brilliance stems from difference.

You spoke to the other children at your boys school about understanding Neurodiversity. Tell us about that-

As part of Autism awareness in April, I did a session with Rex and Henry’s classes to celebrate Neurodiversity.  I wanted to give all the kids a chance to think about their brains. How awesome it is that everyone thinks differently and how that difference is what makes us amazing.  We talked about what brains do and I tried to get them to read each others minds.  We made towers out of exactly the same block, in exactly the same amount of time and talked about how awesome it was that they were all different.  We watched a clip I made about Neurodiversity and the kids coloured in pictures of brains and talked about their own strengths.

At the end of the session Rex and Henry gave their classmate a rainbow squishy brain each to take home.  To remind them all that the are all different and that is really cool.  The kids were amazing.  They really took it on board and went home to spread the word to their families.  The teachers have reported back that this term there seems to be a lot more inclusion within the classroom and social acceptance of others difference.  The parents have been really open and accepting as well and have wanted to know how to discuss autism with their kids.

What advice would you give to other families who have a child with Autism-

Embrace it.  Your journey may look different, but it will be an incredible one.

Your family is on a journey and your understandings and expectations of yourselves and others will need to be fluid.  When you first get given a diagnosis most of us hear the phrase, “if you met one child with autism, you’ve met one child with autism.” It helps us understand that we are all different.  We all have different strengths, different passions and different things that we need to work on.  It’s empowering to know that difference is okay, in the typical world and within the autistic spectrum.

But it is a journey and those around you may need help to understand the path you are on.  Use your voice, advocate for your children and try to understand that we are privy to a lot of information that others may not be.  Share it.  Help those around you grow.  Acceptance is a thing that is built through open and honest conversations.  People will say hurtful and offensive things often by accident.  See it as an opportunity not a slight on your family.

Listen to autistic adults.  They have travelled this road.  Awareness will only take people so far, we need authentic autistic voices to carry this flag for our children too.  “Nothing about us without us,” rings true for all neuro-diverse individuals, and the more you can empower your children on their journey (and it is primarily their journey), the more rewarding their involvement will become.

In our house we talk about brains a lot.

We talk about how amazing they are and how great that is.

We talk about how fairness means giving everyone what they need, not giving everyone the same.

We celebrate our strengths and our accomplishments.

We celebrate Neurodiversity.

Love Tara xx

About the Author

Chrissie Davies

Chrissie Davies is an educator, author, speaker, child advocate, parent and founder of Chaos to Calm Consultancy. With more than twenty years of experience achieving positive, game-changing results for countless families under her belt she is a sought after presenter. Offering a fresh approach to understanding and raising children in a modern world, Chrissie is particularly passionate about creating happier and safer home and classroom environments.

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Chaos to Calm Consultancy would like Wadawarrung of the Kulin Nation. We acknowledge the elders past, present and emerging -particularly the Aboriginal and Torres Strait Islander parents who walked before us supporting and connecting their children to the earth, water and community. Always was. Always will be.

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