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Sharing stories this Mother's Day
Happy Mother’s Day to all the wonderful mums in our autism community!
For some mums in our community, this day can look very different than it does for neurotypical families. Although Mother’s Day and motherhood may look different for autism families, that doesn’t make it any less rewarding and wonderful.
This year, we’ve invited four mums with different perspectives to share their experiences. They share how they navigated the early days of their child’s diagnosis, what makes Mother’s Day enjoyable for them and what advice they have for other mums in the autism community.
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Wendy's story
I had no understanding of autism before my child was diagnosed. When my son turned 18 months old, we noticed that he wasn't responding to his name or acknowledging us. Concerned, I decided to do some research and turned to Google for help. That's when I came across the Autism Awareness Australia website, which provided me with valuable information about the signs of autism.
I suspected something was going on when I was completing the blue book, and at every milestone, there were less and less milestones I could tick off. At his 18-month check-up at the GP, the doctor said it was too early to tell, and we never diagnose that young, telling me: ‘Just spend more time with him and read to him more’. I knew in my gut something wasn’t right, and on Mother’s Day, I downloaded the ASDetect app. It showed how a neurotypical child played vs an autistic child, and that’s when I realised. It was like I was looking at the mirror and without a doubt, I knew my son was autistic. We got him officially diagnosed two months later at 20 months old.
In the early days, I was hit with grief. At first it was denial, then the bargaining - ‘if he’s autistic at least let it be level 1 not level 3’ (he was later diagnosed with level 3 autism) -and then it was the ruminating on what I could have done to cause it. Was it something I did whilst pregnant? In the beginning, I definitely went into catastrophe mode and thought ‘What if he never learns how to drive, or get a job, etc.’ Then it was action mode, and I spent every second of the day researching, getting appointments, and getting on the waitlist for therapy. Being in action mode really helped with my mental health, because it allowed me to shift my mindset and distract me from going into catastrophe mode. In the early stages, it's important to recognise the stages of grief - that’s totally normal - but know you won’t be in that stage forever, and there will come a time where you accept it, and things will be okay.
At the beginning of the journey, you get flooded with information, and some of it is unhelpful and sometimes even dangerous. I wish I had known this. Unfortunately, there are ‘programs’ out there that advertise they can ‘heal’ or ‘cure’ autism. These programs were very costly, required up to 40 hours of time every week, and we were so desperate we even considered selling our house for a chance to ‘cure’ his autism. Autism cannot be cured, and these programs can take advantage of parents in a vulnerable state.
Some things I do to look after my wellbeing are spending time with family and taking time for myself, even if it’s 10 minutes a day. It’s important to also manage your expectations. "There's a saying that you can have everything you want in life, just not all at the same time. Some days you might excel at being a mother but not be able to give your best as a partner, friend, or employee. On other days, you might be a great employee but not as present for your family or partner. And that's okay.
My advice for parents is to trust their gut and to know that it’s a marathon, not a sprint. Make sure you take care of yourself so you’re able to take care of your child. Also, it’s important to approach therapy with the mindset of what supports can I seek out that will put tools in my child’s toolbelt so they are equipped to handle life situations, rather than looking for a cure.
Mother’s Day does look different, but our kids surprise us. My son might not be able to say ‘Happy Mother’s Day, Mum’, but he’s really good at giving deep pressure hugs, and they are just as wonderful. Our children have the ability to show us love in their own way and it’s just as precious and meaningful. For Mother’s Day this year, I’m travelling the week before so I’m looking forward to a coffee in bed and a big hug from my kids.
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Cara's story
I didn't have a lot of knowledge about autism initially, and it wasn't something that I heard of often. I started to research my child's behaviours (before diagnosis), and that's when I had more of an understanding of autism. My child was already seeing a psychologist at the time of diagnosis, which I found helped a lot. She had a lot of knowledge, and I gained a lot of understanding. She has been the most helpful in our journey.
I would have loved to be given a list of resources, websites, blogs and Instagram accounts with relatable knowledge. I also would’ve loved for someone to properly explain the NDIS, what is available, what my child is entitled to and what to ask for.
I didn't have luck with a paediatrician in the early stages when trying to get a diagnosis/answers, but I have found it helpful to have a good paediatrician on this journey. I am very time-poor. I try to make time for myself after my children go to sleep, to read my Kindle, watch a TV show, or do a face mask/hair treatment.
Mother's Day is usually spent at home with a BBQ just really enjoying the day. I find that being a Mum to a child with autism is so rewarding, therefore I really appreciate Mother’s Day. For me, it is a day to reflect on everything we've accomplished in the year and enjoy my kids' company.
The best piece of advice I was given by the psychologist who diagnosed my child was that a child's mind is a sponge and up to the age of five, I could make a lot of progress. I took this on board and saw significant changes with therapies and hard work during that time.
You can follow Cara and her family’s journey on Facebook and Instagram.
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Leanne's story
I work with kids, so I had some limited experience with some amazing kids before Jed's diagnosis. But I have certainly learnt a lot more since living it daily. I think it is difficult for anyone to understand it completely unless they live it daily.
In the early days of Jed’s diagnosis, I found a sports group for kids with disabilities (Skillz 4 me) which was an amazing, supportive place to be during that time- where all emotions were welcome with no judgements. I was also lucky enough to have enough family support to give me the time to really get myself educated, and talk to different people, to find the right pathway in getting support for our little man.
What hasn’t been helpful on our journey are the opinionated people on social media who tell other parents what they should and shouldn't do. Every child is different. and as a parent you know your child best, and what will be best for them. I steered clear of social media forums and made my own decisions about what Jed needed in terms of therapy, support, and schooling and still monitor things very closely to ensure Jed is happy and thriving in life.
In terms of my wellbeing, I go to the gym and run a lot. Exercise is my best way to stay happy, refreshed and ready to take on any challenge. I am lucky to have such a supportive husband and family network around me, who understand and support how important it is to me, and that I turn a bit crazy without it!
On Mother’s Day, I look forward to a normal day of adventures with my family- I don't need anything special, we have fun every day!
When Jed was diagnosed, I did get this advice, but at the time, life was so overwhelming, that I didn't think it would ever happen. I remember Sue Marden (one-on-one children's therapy) telling me that she promised I would be able to do things ordinary people do, such as catching up with friends in a park, going to a birthday party or event and actually be able to stay there, sit down at a cafe and have a meal. etc. At the time, it seemed beyond impossible, but five years later, we are doing all of these things and enjoying so many special family adventures and memories.
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Judy's story
Tim’s autism diagnosis was over 30 years ago; I had no understanding of autism back then. I think I had rarely even heard the word. What was helpful in those early days was kindness in words and actions, often from strangers.
I’ve found over time that there are too many self-proclaimed ‘experts’ and too many people ready to make negative predictions about the future. No one has the ability to tell the future. Those who don’t see Tim in any positive way at all are also people we stay away from.
Looking after my health and well-being wasn’t always a priority, and now at 65 years of age, I’m starting to pay for that neglect. I urge everyone younger to put themselves first where possible and make a little time each day for you. You are in for the long haul. Make your health, physical, mental and emotional, your priority. Surround yourself only with good and positive people.
Having said that, I don't feel like I've paid a price. Everything I have given has been returned 100 times over. My life has been filled with more satisfaction, enlightenment and appreciation for the small and real things; more friendships, gratitude, opportunity, reward, joy and love than I could ever have dreamt or hoped for myself and my family. And, most of it came through autism. All of it is because I got to be a mum to Tim and Sam.
I wish when Tim had been diagnosed someone would have said ‘It's going to be ok. Be a mum first.’
We are big on celebration days, and we always do it our way. There is always cake for breakfast. I will find a few quiet moments to look through the family photo albums. The years have gone so fast. And I will weep tears of joy and gratitude, and my heart will overflow with love because I got to be a mum and watch two beautiful human beings grow into two wonderful, good men who are my everything. I will feel like the luckiest mum in the world, and I do every day.
You can follow Judy and her family’s journey on Facebook and Instagram.
For more information for mums around autism, you can visit the following links:
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