“Imagine the heartache a parent goes through when they discover their beloved child will never be the same as all the other children at school.
That they will have more difficulties and that they will be judged unfairly and harshly for behaviours out of their control. But above all, that because of this, their most beautiful and delightful attributes may potentially be overshadowed and overlooked. For 1 in 110 parents, this is what they face when they hear the diagnosis of ‘Autism’ for their child. Today is World Autism Awareness Day – you don’t have to know or have a child with Autism to repost, just be mindful of the unknown when you see other children. These special, delightful and beautiful children don’t deserve judgement, but instead need kindness, understanding, support and love.”
This is what I wrote on my Facebook page last year on World Autism Awareness Day. At the time we had been going through the scary and overwhelming process of a possible Autism diagnosis with our eldest daughter, and while we got the ‘good news’ that our princess didn’t have Autism, I was acutely aware that many other families were not receiving the same good news that we were. The post on my page was my way of honouring them, and helping others think about Autism and the gorgeous kids affected by it.
You see we were lucky. While our daughter struggled in some areas such as speech and social interactions, after many investigations and countless appointments and questionnaires, it was determined that she just had unique ‘quirks’. We were lucky.
Until we weren’t.
At a follow-up appointment with our paediatrician to go through the results from the many assessments from kinder, psychologists, field officers, speech, audiology (probably others I’ve since forgotten), we then got the news. We too got that diagnosis I wrote about in my post. We heard the confirmation of the dreaded word. Autism.
Heartache doesn’t begin to adequately describe how you feel when the diagnosis is made. The label is given. Your fears for your child are realised. The tears are then shed.
I initially coped, and was strong and very organised and matter-of-fact about it all. We needed to make calls, arrange appointments and get the interventions started. We knew what we faced, and we were going to be proactive and get things sorted. My divine little girl would be ok.
Then in a moment of down time that same evening, I flicked through my Facebook and saw a video a friend had posted that day of her daughter and 2 of her friends singing a song together after school. They were singing and laughing and having a great time. They were my daughters friends, singing a song my daughter loved to sing. The difference was they were singing it together and my daughter wasn’t there.
She wasn’t there because she had been with us at the paediatrician’s office. She missed out on the impromptu concert after school because she was finding out why she was different.
She missed out because she was getting diagnosed with Autism.
While her friends laughed and sang, her world and our world changed.
That was my tipping point. I cried, and honestly still do whenever I think about it. And I continued to cry for a week afterwards. While I knew in my head that the diagnosis was a blessing because it gave us access to funding for the interventions and specialists she needed, my heart was just breaking for my little girl to have this and to be different from everyone else and to face more challenges than other kids. It tore me up to think about how much more difficult her life would be. Would others appreciate her? Would the kids at school like her? Would she find school and learning harder? What was her future going to be like? Would others not see the amazing, kind, compassionate girl we saw every day, but instead see the label and judge her on that alone?
It is one thing to suspect it, but another thing to have it confirmed. It just devastated me.
I am in constant awe of the families who live each day with a child who is deemed ‘severe’ on the spectrum. These beautiful children who perhaps don’t communicate or show affection, who can’t go to school and who remain locked in their own worlds that we may never fully understand. I know the difficulties we have faced with our daughter, and I know that they pale in comparison to the lives and daily struggles other families face.
I take my hat off to these parents, and if I could I would come to your house with a bottle of wine, a stack of cupcakes and give you a massage. It’s the least I can do.
The world of Autism is hard. It is lonely. It is scary. Sometimes it feels like it’s never ending. This year we also added auditory processing difficulties to the list. Participating in simple activities like swimming and dancing can be problematic. There are endless conversations with teachers about how to communicate with our daughter, to make sure she hears what it being said, that she is not given too many steps to follow at once, that the sentences they use to speak to her aren’t too long. It’s not just a matter of turning up, sitting back and relaxing.
There is the endless scheduling of appointments with speech pathologists, occupational therapists, psychologists…. And the inevitable question: How are we going to pay for this? Funding runs out when your child reaches 7.
Socialising can also be difficult. Controlling over the top behaviour and meltdowns is always stressful. While friends and family know our situation, I am fully aware of the ‘looks’ we get sometimes. That look from a friend that says “why can’t you control your child”, “I would never let my child behave like that”. The judgements when I am strict on her diet and the types of food she consumes, “If they can’t indulge on junk food, lollies, cake and soft drink at party when can they”, “they’re only young, you can’t be too strict and take away their fun”.
The bright side is when these delightful children achieve something or learn something new, or simply master a task or a concept that the other kids already understand. The sense of accomplishment is amazing. I am so overwhelmed with pride for all that my daughter does and all that she achieves. When she masters her stroke at swimming, I’m almost jumping out of my chair to give her a high five. I get teary at parents teacher interviews when the teacher shows me her progress with writing or spelling. Don’t get me started on what it’s like when she gets an award at assembly! She started dancing this year as an attempt to make her world less about Autism and more about being a kid and having fun, and I already know that the end of year concert will involve a lot of cheering, clapping, and a decent amount of tissues and tears of pride on my behalf!
We are now in a very different place to last year. We have been through so much, and continue to on a weekly basis. But I know we are blessed to have the daughter that we do, and I wouldn’t change anything about her.
And on this day of awareness, I ask everyone to be truly mindful of the unknown when you come into contact with other children. Don’t judge what you don’t know. Children with Autism are facing battles we can only partially understand, give them love and encouragement and praise for all that they are achieving and how hard they are trying. They deserve it.
Michelle is a wife, a busy mother to two gorgeous little princesses and a paediatric nurse. She loves to laugh, read and watch Disney movies with her girls.