“We call autism his super power and a gift”

As a parent of a neurodivergent child, I can say I have spent countless hours reading research, long articles and listening to podcasts to help me raise my 6 year old, but nothing has come close to the feeling of connection I get from reading other families stories.

As a parent of a neurodivergent child, I can say I have spent countless hours reading research, long articles and listening to podcasts to help me raise my 6 year old, but nothing has come close to the feeling of connection I get from reading other families stories.

The Keywell app will feature interviews with all types of families and their journeys to help others through theirs. * Names have been changed to protect the family’s privacy 

Q1. Every family has a unique and different story. Tell me a little bit about yours?

I’m the very proud Mum of Caleb and Sarah and the very lucky wife of Anthony. Caleb has ASD Level 2 and was diagnosed at 4 years old. He is now just about to turn 11 years old. I was advised of Caleb’s diagnosis a day before my brother passed away unexpectedly – it was a very bad week. 

I had no idea where to go or who to ask questions of, so I turned to a Mums Facebook page. They were wonderful and through that I came into contact with Plumtree. They literally saved our family and helped us to understand what autism was and what it meant for our child and family. 

Over the years my husband Anthony and I have attended numerous parent training courses, seminars, workshops and conferences to better understand how autism affects us as a family. I even changed my career from being an Executive Assistant and leaving the corporate world, to becoming an Inclusive Play Project Manager at a children’s charity because of my passion to see change in how “different” is viewed in society. I’ve come full circle now and am just about to re-enter the corporate world where I will continue to passionately advocate for inclusion to be the norm, not the nice to do.

Q2. Many parents say that they knew from very early on that their child was different. What made you question whether your child’s behaviour was typical for their age?

Caleb had a difficult birth and was a suction delivery. He then had to go into special care for 2 days due to glucose levels (I had GD). Right from the word go he was a tricky feeder – I ended-up expressing and dual feeding expressed and formula milk for the first 11 months (damn near killed me!). 

Caleb was always a baby of routine and didn’t like things changing – he had to be in his cot for his day sleeps, he wouldn’t sleep in his pram and rarely in his car seat. He preferred being with me, and at a push my husband. I remember my mother saying when he was 8 months old that she didn’t think he liked her. Ironic given they are now incredibly close and share a very special bond. 

Caleb was late to walk – he walked at 17 months and he never crawled, more crab crawled. He has always been fussy with food, textures etc and this is still the case today. 

Caleb started daycare 3 days a week from a year old and it was the director and teachers there that first pointed out a few differences and encouraged us to seek further advice. 

Q3. How did you go about getting your child assessed and what did the diagnosis mean to you and your family?

It took almost 2 years to get a proper diagnosis and 3 attempts with different specialists. They all said he was just shy, he’d grow out of it etc etc. I hadn’t even thought it was autism as nobody had mentioned it could be. To me, I thought I had a very strong willed child who had trouble regulating his emotions. As a first time mother I knew no better.

We ended up paying ourselves to have him assessed by a child psychiatrist and she then got a paediatrician to confirm her diagnosis. It was a traumatic experience and we didn’t feel supported at all through it. As mentioned, we had a lot of very sad and hard things happening in our family at the time of his diagnosis, so I’m pretty sure I went into shock and self preservation mode for a while. I felt like I had somehow let my son down and questioned everything I’d done as a mother and even when I was pregnant (Caleb was an IVF baby). 

With some thought and discussions with my husband, Mum and some close friends though, I turned into a lioness and vowed I was going to research and do everything in my power to give Caleb the life he deserved and the support to help him achieve anything he wanted in life. It became like a second job researching, calling, meeting specialists etc trying to work out the support he needed and then setting a plan in place. I only ever worked 3 days, as the other days were full of early intervention therapies and me looking after two babies who were only two years apart.

Interesting as with time, my husband has come to be sure that he is also on the autism spectrum. We are also certain we have extended family members on the spectrum too. My daughter and I are neurotypical, but I see little traits in both of us as well that could very well be spectrum based. 

Q4. What diagnosis has your child received and are you eligible for NDIS or other services?

NDIS wasn’t around when Caleb was diagnosed so we paid for it ourselves. We have suspected Oppositional Defiance Disorder and sensory processing issues along with his ASD diagnosis. Caleb has also experienced very difficult anxiety at certain stages of his life too – especially separation anxiety from my husband and I.

We now use NDIS to fund fortnightly child psych appointments. Our daughter also has a session as sibling care a few times a year as well.

We have employed two of his ex-school teachers as support workers. They have a session with Caleb once a week. We set goals and they work around those – for example, he needs a bit of help with English comprehension at school so they are helping with that, plus they are teaching him to tie his shoelaces and deal with games not going his way and taking turns. We also used NDIS for many years for incontinence products for Caleb, which included nappies, bedding etc.

Q5. What kinds of things does your child struggle with and what therapy, strategies and accommodations have you used that made a huge difference and which ones didn’t work?

Emotional regulation, anxiety in social situations, not reading social cues, sensory issues, food intolerances, inability to cognitively understand every day tasks like how to get ready and organise himself, transitions and change is very hard for him – he needs lots of preparation and information and doesn’t really like surprises. He likes to follow the rules and gets angry when others don’t. He doesn’t really like to play other people’s games, but wants to be the “Boss” of the games. On the flipside, he loves to help people, especially with things he knows a lot about.

We have learnt to pick our battles in regards to behaviour. He is an A grade student and probably the most well behaved and respectful student in the school as he holds it all in and masks. He’s also on the student representative council, which he was elected into by his peers as he is seen as a leader. 

Over the years we have extensively used therapies such as OT, speech, psych.

We really struggle with the control our ASD son often tries to have over his younger sister and the short and long term effects this may have on her. It’s probably my biggest worry. We see a child psych and ensure we step into situations where he is being too bossy, but it’s a daily struggle. She is thankfully developing into a confident and well adjusted child who isn’t afraid to speak up for herself.

Q6. Is your child medicated? What are they on and how long did it take you to get to the right combination?

No he isn’t and hasn’t been. We are not opposed to it, but don’t feel he needs anything at this point.

Q7. Our communities, schools and society in general are built for neurotypical people. What have been some of your biggest challenges to date and what has helped you navigate them?

I’d need a discussion about this, too many to write down – meet with your principal and teachers regularly, organise meetings for teachers with psych, OT, Parents so you’re all on the same page. 

Join the P&C, so you know what’s going on and can passively advocate. Fidget toys, schedule planners, understanding routines, extra prep and social stories for something out of norm (eg excursion), let teachers know if they have had a tough night, struggling with homework etc. 

Don’t just wait for parent interviews twice a year, it’s not enough. We are approaching High School and I’m utterly terrified! I’ll do all I did with primary school, but I am fearful he will just be forgotten and have to fend for himself.

Q8. What are some of the things that you celebrate and love about your child that help you empathise in the midst of life’s storms.

We call autism his super power and a gift. Sure there are a few tricky things with it, but he sure wouldn’t want to be anyone else but his unique, kind, caring and loving self.

Q9. Do you have books, podcasts or other resource recommendations?

The parenting spectrum podcast was good, also like Wearthy podcast. 

Never have any time to read books but I do follow various organisations on social media and read their info. 

#ReframingAutism and the #ICANNetwork are my two fave. I’m also on A LOT of Autism support Facebook pages

Q10. When we care for others it’s important to put on our “oxygen mask” first. How do you look after yourself?

I need to get better at this. I’ve changed my profession so that I can passionately advocate for a more inclusive and understanding society for those that don’t fit the “norm” (hate that word, nobody should ever strive to be normal!). 

I’m about to start a corporate job, but still with this lens of inclusion and mindset change, so I’m excited by that.

My husband and I don’t get to do dinners or weekends away just the two of us – a decade on and I still hope one day soon we can. 

I have a best friend who also has a child on the spectrum so talking and catching up with her helps me a lot.

I love photography, fashion, interior design and chocolate. Wine also helps 😊

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