Our autism journey with ASPECT
With April drawing to a close, I’m reflecting on our autism journey as autism awareness month also nears its end for another year.
We have been officially living with autism now for 8 years, after receiving our son’s diagnosis on March 30 2008. Like most other autism parents, the details of that day are seared into my brain.
- The meltdown in the examination room because the sheet on the bed was decorated with roads, cars, trucks and pedestrian crossings (our son’s special interest at the time) and he couldn’t understand it was just a 2D effect – he could not grab hold of what he so desperately wanted to hold and could not understand why.
- The hot tears that stung my eyes as we heard the word “autism” fall from the paediatrician’s lips. It was by no means a surprise to us, but as much as you steel yourself for that moment of truth, nothing can prepare you for the intense feelings of grief and despair that course through you in that moment.
- The trip to Toys’R’Us that followed, to purchase an $800 wooden playset to make ourselves feel better, as much as to help with future OT needs for our son.
- The many hours of internet searching that followed, researching specialists, therapies, outcomes and, yes, potential cures.
- The sore eyes, heavy head and hurt heart that I took with me to bed that night.
- The clear gaze of the little boy, so fiercely intelligent, yet so unsure in the world around him.
In the days that followed the diagnosis, we received the same advice from a few different sources – talk to ASPECT and see what they can do to help our son.
We did get in contact with ASPECT and although we had a bit of a rough start (due to our son’s dual diagnoses of autism and albinism and our struggle to balance the needs of both these diagnoses) we placed our faith in them and enrolled our son in full-time early intervention at ASPECT Hunter School for the following year.
That year was a turning point for all of us. We learned some of the ways which we could help him at home – providing visual cues, understanding and catering to his sensory needs and giving him more time to process information – and he blossomed in front of our eyes.
He had so many firsts during that year. He went to the movies for the first time. He learned how to order food at a shop. He found the confidence to actually get in the water in class swimming lessons. He started tentatively trying some new foods.
And he made friends. Many of which are still his friends to this day.
After a successful first year at ASPECT Hunter Base School he moved to a satellite class which is collocated in a mainstream school. Here he learned how to interact in a mainstream playground. He started having a lesson here and there in a mainstream classroom. And he began to read and display his trademark intelligence and wit.
After two years learning to adapt to a mainstream environment, we made the call to transition him to his local public school. And in 2012 he moved away from ASPECT and into the public school system.
But this wasn’t the end of our association with ASPECT.
After Gilbert was suspended midway through Term 1 2012, ASPECT came out to assess his progress and make recommendations to better support him in class. A communication book was introduced to ensure clear communication between school and home and greater attention was paid to daily routines and preparing him for change.
Although a suspension was not something any of us wanted, it forced us to assess his needs and introduce strategies to better support him. It was also a great deterrent – he has NEVER been suspended, let alone got into any sort of trouble, since that fateful day!
Another 4 years have now passed and it’s time for Gilbert to make the transition to high school. And ASPECT are going to be there again, helping us with this latest, and perhaps most challenging, transition.
They will come out to his class to see how he is coping and being supported and then head to the high school to see what provisions need to be made for him there. They will also conduct an information session with staff from the high school to ensure they are all aware of his individual needs.
I honestly don’t know where we’d be without the support of ASPECT over the last 8 years. They have done so much to help our son manage in situations we never thought he ever would. And I have long wanted to do something in return.
The answer came last month when I was approached by ZippiZap bikes to undertake a review of their range of balance bikes (check out my next post for the review!)
In the course of our conversation, we touched on the potential for balance bikes to assist kids with gross motor deficits to learn to ride a bike without the coordination challenge of pedals. I mentioned that my older kids had never learned to ride properly without training wheels due to these issues – it’s just something we’ve never been able to master.
Touched by this reality, ZippiZap very generously offered to donate 4 bikes to an organisation of my choice, in order to give other kids the opportunity to learn a valuable lifelong skill.
I was flabbergasted – what an amazing gesture! And what a responsibility on my part to choose an organisation to gift these to.
After my initial confusion, it did not take very long to realise that ASPECT would be the logical and very worthy choice for this donation.
So after a little more consultation and discussion, I found myself at the ASPECT Hunter Base School just before the start of the holidays, receiving a tour of the school (they relocated to a purpose built facility after Gilbert left in 2012) and seeing the bikes in action.
The school is beautiful. It is perfect for their needs and I loved seeing the kids in all their rainbow colours (they celebrated World Autism Awareness Day with a walkathon earlier that morning). They have a glorious climbing playground to use, a bike track (perfect for their new ZippiZap bikes), another undercover play area very generously donated by Westfield, a dedicated sensory room, and air conditioned classrooms for the students.
I was so pleasantly surprised to find many of Gilbert’s old teachers still there – all beautiful and generous souls. I also knew many of the admin staff too – it felt like I ran into an old friend whenever I turned!
It was a fantastic visit, capped off by watching some of the students try out the bikes. It will take them some practice but I hope they can eventually master a skill that so many take for granted. Something that my own kids are yet to achieve.
I want to thank ZippiZap for their wonderful donation – I hope you realise just how much happiness you have created by just a simple gesture.
And I want to extend my eternal thanks to ASPECT for always being there for us – especially now, as we enter a year of more unknowns.
This autism journey never seems to get any easier – but it’s good to know that we are never alone x