by Erin Yates
Our family’s autism journey began back in 2008. Jack was officially diagnosed at eighteen months. He wasn’t meeting his milestones and didn’t speak his first word until three years of age, well in to his early intervention programme. He lined things up, colour coordinated things, liked sitting in the bath under cold taps for minutes at a time, walked around flicking lights on & off, flapped his hands and tip toed, didn’t like to be looked at or talked to, constantly screamed to get attention or have needs met, disliked too much noise and bright lights, woke up numerous times during the night distressed, ate limited foods and the list went on. We had such a great start to his programme with the outstanding help from his lovely therapy assistant. We started speech therapy prior to any diagnosis and also occupational therapy not long after this. It took months of organizing, waiting and pushing to get all the services we required, and to learn and find out what was available and what we needed to help Jack. The south west region had and still has very limited services with such long wait lists, so we were extremely lucky!
I did struggle personally though on how to deal with this and what it all meant to my son and our family. For a long time I also blamed myself for Jack’s autism. Around the time prior to Jack being diagnosed I was already pregnant with our second son Liam and Ryan worked away for our own haulage business up North. He was away from home 4 weeks at a time and 1 week at home. I had very little family or friend support and I was at breaking point dealing with it all on my own. I can remember for at least a twelve month period where everything was on top of me, I felt alone with two kids under three and trying to keep a business and relationship together as Ryan and I didn’t see eye to eye on the diagnosis. After some time to reflect on everything up till that point in my life, I finally realised what was most important. It clicked!
It was important I focus on my children from then on and I needed to put in 110% myself to finding out and learning as much as I could about Autism. I was Jack’s advocate now so I had to be strong and make a positive from a negative. I am always one of these people who thinks that things happen for a reason. During 2007/2008 when Ryan and I started our new business, a friend had put us in touch with an accountant who could help us with the financial aspect of work. I remember one of the first things he asked was if we were seeing a paediatrician for Jack due to some behaviours being witnessed, and his lack of speech and socialization skills. It felt good at that point to know someone else, who I had never met before, was seeing exactly the things I saw every day! After a long talk, we discovered he and his wife had two autistic boys. These friends we can’t thank enough for the amount of information they have provided us, websites to research, books to read and to be able to call any time for a chat or help. I feel it was meant to be.
Not long after this I was put in touch with a group of families who caught up regularly, all who knew or had an autistic child. There have been various catch-ups in different places in the south west which I have regularly attended. This group has grown rather large since my first meet back in 2008. Without these lovely families who I am so lucky to have met and call good friends, I am not sure what path our lives may have taken, but I know they are people we will be connected to for life. Due to work commitments I have stepped down from my place on the committee with SWAN but I will always endeavour to be involved in some way with the organisation.
Jack still struggles from time to time with various issues. These will never go away and are constantly changing with age, but we the have tools now to deal with this together. He now attends Cowaramup Primary School (a public school) and has an education assistant supporting him five days a week. After 4 years of four hour sessions per week of Applied Behaviour Analysis and Discrete Trial Training therapy sessions, speech therapy, occupational therapy, psychologist sessions, sensory workshops, eating interventions, sleep therapy, our Wilbarger’s Protocol Body Brushing programme & daily visual scheduling, I am happy in the knowledge that I have done all I can to give Jack the best start he can now make – on being Jack.
The only piece of advice I can give to any parents is to look for the positives. I know wherever life leads Jack he is going to be the best he can be, at what he puts his talents and abilities to & that makes me the proudest mum in the whole world!
Now, 2013, Jack is attending the same school in Year 1 along with his brother Liam (5) whom is in Kindy – also diagnosed with autism. Jack had the same EA 4 days a week & Liam has an Education Assistant 1.5 days out of 2.5 days. Ryan & I went through assessments for Liam twice. Once at 2yrs of age via the public health system & again at 4yrs old via private – speech pathologist and clinical psychologist. We are extremely happy to see both our boys have learned through therapies to self-help now with very little help from us. We still have our up & down days but we can always see how far we’ve all come throughout the boys autism journeys both of which have been the same but very, very different!
With love and thanks to all who were along for our journey; SWAN (All the lovely people for their support), my family (Ryan, Liam, Jack, Nana and Granddad), Kath Olsen (Jack’s special Nana), Sue Jackman (Jack’s first & unforgettable therapy assistant), Rachel Ramm (Speech Pathologist), Monica McGrath (Occupational Therapist), Brooke Purslowe & Dr Felicity Adams (DSC & Child Matters Clinical Psychologists), Grant & Nick Avery, Deb Cant, Rosemary Kelman (Jack’s therapy assistant 11/12 School), Ange Brown (Jack’s class aide).