My story of being an autistic mother began 14 years ago when my beautiful boy was conceived through our only round of IVF; we had been trying for many years and were very lucky to be able to afford IVF through Medicare funding at the time, we were able to do one round of funded IVF and fortunately for us that round turned out to be our beautiful boy Mason. As a baby, Mason was always so happy and smiley; he took everything in his stride, meeting all his milestones. When Mason was a year and a half, we had his sister, Katelyn. At this time, my husband was working away on a 2-week DIDO roster in Roma. Being Mason was always a daddy’s boy, I was suffering from postnatal anxiety, panic disorder and depression, and I didn’t want my husband to miss out on special milestones with the kids. I needed my husband’s support, so we moved our little family to Roma.
Life in Roma was interesting; it was a beautiful town, but it was super hard to raise two young kids in when you can’t just whip down the shops when hubby is home, see a doctor on a Sat arvo or grab baby Panadol at 10 am on a Sunday. We lived in a beautiful one-hundred-year restored Queenslander with a lovely huge, fenced yard for the kids to run. My first instincts as a mum pre-diagnosis were that my boy would not like his sister’s cries, and he would yell or squeal to be above her noise level; he also loved the feedback from running on the old weatherboards in the house, but this noise would make him squeal more too. I would take him to music time and playgroups as he loved and enjoyed himself. Still, I found this would be too much for him when he was in the group too long. He would get irritated and melt down. Many other parents commented that he was just being naughty and that I should smack him, but I didn’t feel he was being naughty; it was his way of telling me he was uncomfortable with the environment and wanted to go.
Mason also had extreme temperatures, either a hot frog or a cold frog, so in summer, he would quickly melt down due to heat and in winter, you would have to put layers on him. While Mason would sleep well at night, during the day, sleep was different; we almost had to hold him down to provide feedback to exhaust him, and I cannot tell you how many times I listened to the same music therapy lullabies, but they always did the trick in the end. Soon, Mason’s behaviours flared in the daycare environment, and I was left concerned about his safety; we took Mason out of one daycare and put him in a family daycare, which was the worst thing I could have done. Mason spent his first week cooped up in a small room and could not go outside or leave; he was like a caged animal. We soon received an SMS from the daycare mother that said he was not welcome back. In the interim, I worked on my mother’s intuition and got a therapist in for a second opinion. She said that he was showing many traits of Autism Spectrum Disorder. Being that mum, I went straight to the computer to read up about what Autism was and how it affected my child. Being we were in a rural town, 5 hours from Brisbane, I also researched how long it would take for Mason to see a paediatrician, and we were told the best-case scenario was one and a half years at that stage. My husband and I sat down and discussed the possibility of the diagnosis, the fact Mason was not coping in a daycare environment, and, therefore, I couldn’t work. We decided that the best thing for Mason and our family going forward was to return to Brisbane, where he could get diagnosed; we had more options for daycare, I could return to work, and we had the support of family and friends.
We moved back to Brisbane when Mason was two and a half, nearly three. We got into a paediatrician privately within six months, and that’s when the fun of an autistic parent starts: the paperwork; any special needs parent will know the paperwork is a killer. In the end, by the time Mason was three and a half, he was diagnosed with Autism. We looked at the best steps to help Mason be in line with his peers, which meant I had to switch to part-time work so we could enrol Mason in EDCP and maintain his therapies. So, off with his little Fireman Sam backpack, he went to school. Mason learnt a lot in ECDP but still could not do little things like his peers, i.e., holding a pencil to draw or sitting with his peers for group activities. So, one night, my mum rang me and talked to me about AEIOU, an early intervention program for Autistic children. AEIOU for us was a game changer, and boy, did Mason give them some challenges; they were able to work with him on emotional regulation, toilet training, and safety in car parks (he used to run off on me), and Mason significant behaviours, so that Mason would be able to go into kindy with more tools to support him. The early primary years were interesting; trying to get Mason to comply with a mainstream system was not always easy, but some incredible teachers, special needs teachers and teacher aides heavily supported him. Mason’s best year at primary school was year one, and he thrived; he loved his teacher, and she had a soft spot for him; he used to return to her class in later years to help with other Autistic children in her class.
Mason’s school life, however, changed a lot in year three when he experienced some bullying from an older student and had a teacher who constantly excluded him from the classroom by sending him to the learning support unit. At this point, we saw our little boy change from building train tracks and flying planes and helicopters to not sleeping, being hypervigilant and heavily fascinated by the armed forces. Was it his way of learning about protection? I am not sure, but from a sad experience came a very positive one. Mason can soak up anything military and police operations; he knew more about WWII at the age of seven and eight than any person I knew; he also joined a local cadet unit and used to take our German shepherd and patrol the yard in complete military kit. When he was eight, Mason became a patrol leader for his cadet age group. He loved marching, ANZAC Day and replaced the train tracks with little military soldiers, making his battlefield reenactments.
In years four and five, Mason had great teachers at school but struggled socially with his peers; he found it hard to read conversations and situations, and sadly, this saw his interactions with peers become strained at times, whilst he was well liked his only consistent friendship was his mate from AEIOU who he saw on school holidays. Life changed considerably for Mason when his year four teacher started taking Mason under his wing in the playground and invited him to kick the footy on the oval. This then introduced Mason’s new passion, rugby league; through kicking the footy with his peers on the field at school, his friends encouraged him to come and join a local team. Not having the best experience with sports, as a mum, I was hesitant to hand my boy over to get emotionally and physically hurt. I said to him, are you sure? Those kids have been playing together for years; you might feel on the outside. His dad, who is always Mason’s champion, encouraged me to let go and let him have a go; he can only try. I am happy that my worries were quickly alleviated, and he and our family were welcomed into the fold in no time.
Mason graduated from primary school last year, and it was terrifying as a mum to think about what high school would look like for my boy. All the high schools in our area had 1000+ kids, and I just felt that he would be spending all his time being hypervigilant and not focussing on his academics. My husband and I have always loved the acerage life. Mason is quite loud at times, and that is not conducive to a condensed type of living. My hubby was always keen to return to Warwick as he grew up in the town as a child and thought this might be a good place for us to look for schools for Mason. We researched the schools, and I narrowed it down to two; for the first time, Mason went for a school interview, and honestly, I was nervous for him. The principal was stern, but he researched the school and was honest about what he liked and struggled with. He blitzed the interview, eye contact and all.
From there, we were welcomed into the fold, Mason attended multiple transition days, and Katelyn was accepted into my husband’s old school. She was welcomed to participate in the school on the same transition days as Mason. So once school was sorted, the next challenge was packing up eight years of our life, including chickens and finding a home in an impossible market in Warwick; if you think Brisbane is a tough market, try rural towns. Again, we were blessed and found a perfect house, and we have not looked back. The kids have a swimming pool to relieve their silly energy, and Mason has his man cave for his flight simulator. Before school, we had a few play dates, and the kids have been very fortunate to make some terrific friends with whom to enter the new school year. Mason’s first term started well, but sadly, the behaviours caught up with him towards the end of term as he is getting used to playing with a new football team and participating in ADF cadets (his dream since he was seven). Still, after a restful Easter break, he is back at it, and we received fantastic feedback on his parent-teacher interviews and first report card. Yesterday was Anzac Day, and Mason attended his first dawn service and Anzac March with his ADF cadet unit. He did an excellent job, and we were very proud of him. I think he even surprised himself; seeing him included and being a positive contributor to the community is my goal as an Autistic mum.
Being a mum of neurodivergent children, Mason now has an official diagnosis of Autism and ADHD-C, and my daughter is newly diagnosed with ADHD; I couldn’t be prouder of the kids I am raising. They are beautiful kids who are kind, caring and empathetic. I love that they think differently and have fascinating perspectives on seeing the world. I am never left bored with my children, and I thank them for the fact that I am forever learning about life. Through my mental health challenges and raising the kids, my husband and I have not always had a smooth path, but I can say that when it comes to both, we are a good team and always try to find the best way forward for the family. I have now taken my passion for living in this world and run a Facebook parent forum for over a thousand neurodivergent parents in the southern suburbs of Brisbane, Gold Coast and Warwick. The reason why I started the group is I have found over the years that as neurodivergent parents, whilst our children are all unique and different, the path of pre-diagnosis and parenting is quite similar but can be very isolating as we get excluded from a lot of social things. We neurodivergent parents go through paths of grief and loss, bewilderment, stress, and difficulties with navigating the schooling system and the world in general. Still, as parents, we can best support each other. I have learnt the best things from the parents that have trod the Autism path before me, and their wisdom I am forever grateful for. I am taking this passion one step further. I have completed a graduate diploma in child, youth, couple, and family counselling, so I may be able to work more closely to support neurodivergent families so we can holistically support our neurodivergent children to be active and positive contributors to society.
Tanya’s recommended websites include: https://suelarkey.com.au/10-tips-to-embrace-neurodiversity/