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"I had the perfect life and the perfect job. Then my son was diagnosed with Autism."

For parents looking after children with autism, the road can be difficult but rewarding.

Primary school teacher Louise Fitzgibbons really struggled to come to terms with her son’s diagnosis.

She shares her story:

Nigel Raynard, Taj Byron Raynard and Louise Fitzgibbons filming their day at the beach.

Taj Byron Raynard was born on December 27th, 2007. My labour pains started on Christmas eve and it was very long and uncomfortable. He finally came at lunchtime and was a healthy little boy, weighing 8 pounds 12 ounces.

I stayed in the hospital for almost a week due to trouble breastfeeding. Taj just didn't seem to want to feed and pulled his head away from me crying. The nurses told me to persist but, by the last day, I was given a bottle and told to try formula feeding.

Taj cried a lot in that week and I had lots of trouble calming him. I thought this was just me being a first time anxious mother.

The first few weeks were a blur. Taj started waking in the night, screaming for hours on end and there was no way to calm him. After a few visits to the midwives and doctors, who suggested he had a pinched nerve in his neck or colic, I later Googled what might have been night terrors. These night episodes continued for about 3 or 4 years with no real idea of how to deal with them.

I felt something was wrong in those first couple of months when Taj never fell asleep in my arms and was only consolable in a bouncer with a bottle in his mouth.

The years passed and Nigel and I were in love. 

Date night #byronbay

A photo posted by Louise Fitzgibbons (@louisefitzgibbons) on

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We chased him up the beach, built sand castles and made chocolate cakes almost every day.

I began to feel real concern when Taj was two and half and I would call his name, but he wouldn't respond.

He made very limited eye contact and preferred to sit on his own. I decided that maybe he had hearing problems, but his hearing test came back perfect.

It was time to visit the Paediatrician.

After an eight month wait to see them, Taj was diagnosed with Autism within 5 minutes of seeing the doctor. He screamed in the waiting room, had a meltdown when they tried to weigh him, and made the receptionist climb a shelf to get the toy truck he demanded.

The diagnosis was such a relief. I felt like I had answers and obsessed over finding out everything I could about Autism.

Taj was also sent for genetic testing and the results came back that he had a chromosome deletion on chromosome 4 at 35.2. An extremely rare condition known as 4Q Syndrome. Nigel and I were sent for testing and Nigel's results came back as having the same deletion.

In a really selfish way, this came as a huge relief to me. I'd spent years feeling as though it was my fault Taj had Autism.

As 4Q Syndrome was so rare, we were told very little about the symptoms or how to deal with them. Taj was sent for medical tests and they all came back fine.

The following years were filled with Early Intervention, Speech Therapy, and Occupational Therapy.

I would often leave social situations such as a play date at the park in tears because Taj had scratched another child, run away or had a meltdown.

It was a difficult couple of years. I would take Taj to preschool and compare him to the other children and, again, leave in tears.

I was having trouble coming to terms with Taj's diagnosis.

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I had the perfect life, the perfect job teaching, the perfect partner and this just wasn't how it was meant to be.

Nigel's mother, who lived in the USA at the time, began researching Autism and how to help our family. She came across a course in the States called the Son-Rise Program. She jumped on a plane, flew across the country and attended the week long program. She was so thrilled with it that she set up a fundraiser to help get me there.

There was no way I was going, leaving Taj, who was under 3 years old and, besides, I had no money!

The fundraiser worked. We had one friend give us $500 and almost everyone in our lives donated. It was their way of helping when they hadn't known how to help.

I left Nigel and Taj and headed off to New York. The program taught parents and teachers principles and techniques, which enabled us to help our children in all areas of learning, communication, development and skill acquisition.

I came home a different person. I finally understood my child.

I had learned to love and accept him for who he was. He is Taj, he is perfect just the way he is.

I stopped comparing him to other children. I became present with him. I joined his world instead of pushing him to join mine.

I celebrated the person he was and every little achievement and moment in our lives was something to be cherished.

Family fun with @knektaus ❤️???????? @louisefitzgibbons @gopro @goproanz Captured with #GoProDome #ByronBay #WategosBeach

A photo posted by Nigel Raynard (@uniqueimages_australia) on

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Taj spent the first year of school in a support class. His anxiety was so high he refused to join the other children in the playground for that whole year, preferring to play on the computer instead.

His language began improving and home life was great. We often used picture cards with him and visual timetables to explain to him what was happening and what was next to ease his anxiety.

By his second year of school he was ready for a mainstream class. We had a few hiccups but, overall, he fitted in well. He formed friendships and fell into the day to day routine well.

We still have challenges but, overall, life is good and Taj is thriving.

We use GoPros on a daily basis. Mounting them in the car when we go places, mounting them on his bike and bodyboard. We enjoy reflecting back on fun times we have shared as a family.

Watch this video for great tips on using a GoPro:

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Nigel and Taj are both very visual people and feel at ease whenever they are engaged in technology so this has helped them form a common bond.

Taj has his own Instagram account where he enjoys sharing his photography with his family and friends.

I love that Taj has so much access to technology and is able to use it to connect with the outside world, and also form stronger bonds with those closest to him.

I was at the water slide and it was so fun ???????? #Bigbanana #coffsharbour #waterpark #fun

A photo posted by Taj Raynard (@tajbyron) on

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