August 19th marks the start of Brain Injury Awareness Week. (BIAW). Currently 1 in 45 Australians are living with a Brain injury, my 15-year-old son Teo is one of them.
Teo was born with a very rare brain tumour, we were extremely fortunate that it was benign and at 10 weeks old Teo’s only option for life was to undergo Brain Surgery. Due to him being such a tiny human, his neurosurgeon could not safely remove the entire tumour. So, at a more robust age 5 months Teo endured a second surgery which successfully removed the entire tumour, leaving him with a plethora of Neurological disabilities.
Brain injuries affect individuals very differently, depending on the location, severity, and intensity of the damaged tissue in the brain. For my warrior son, his brain injury has altered his cognition, sensorimotor function, emotional capacity, and short-term memory function.
Teo finds it hard to tether himself into the world and the environment around him. He has limited working memory, and his executive function like organisation, focus and ability to follow multiple step directions is diminished. He has great trouble remembering what it is he is doing, where he has left things and time, and money are constructs that he is yet to grasp.
Although this sounds very dire, and believe me life with him is extremely challenging, the positive side is that we are forced to just live in the present moment with Teo.
All day every day, all we have is the present moment, it is the only place where Teo knows how to exist.
If we slow down long enough for him, we realise that he has been our greatest teacher and witnessing him navigate and thrive in a world that is not designed for him is truly inspiring.
One of the ways Teo’s Brain Injury presents is with hyper fixation, this provides Teo with an anchor into the world around him. Last year Teo became hyper fixated with the Lennox Butcher and Deli, as the shop is a tangible landmark close to our home and they open and close at the exact same time every day. Teo would ride his bike up before school to ensure that Trev and the boys were there by 7am to open. Teo would sit quietly on the bench outside and just watch them work.
This went on for a few months and Trev noticed and asked Teo if he would like to come in and be his “wash up boy”. Teo was so elated, I thought he was going to fracture his jaw as his smile was so colossal and prolonged. Teo presents to the world like a completely normal looking 15-year-old young man, Brain injuries are referred to as Hidden Disabilities, they are not obvious or visible to the outside world.
I was so excited for Teo who exclaimed to me “Mum, dreams really do come true” as all he had dreamt of was to work in that butcher shop with his favourite men. I was also completely terrified as I understood how Teo’s brain injury affects his functioning. I did try to explain to the butchers about his hidden disabilities and how Teo’s function was impaired, I was met with “He’ll be right, we will just get him in here and then put the dishes in front of him and see how he goes.”
The acceptance from them all was completely overwhelmingly positive, something that was very new to us as often children living with disabilities are not accepted like their able-bodied peers. Still, in the back of my mind I knew that it was going to be very difficult for Teo to follow even basic instructions. I knew only too well the lack of inclusion that couples raising a child with invisible disabilities, so I did what I usually do, which is to panic silently but hope for the best and trust in the kindness of the men that worked there.
What happened was what I had expected, Teo was unable to follow simple instructions and to complete the most basic of tasks that people like you and I take for granted. What I did not expect was the outpouring of complete acceptance, support and mentoring that each one of those fantastic men in the shop bestowed upon my son.
Trev, Chris, Jimmy and Callum accepted Teo for who he truly is. They chose to foster a sense of inclusion, acceptance and belonging and make a young man living with a disability’s dream become his reality.
These men could have easily chosen frustration and impatience whilst dealing with Teo’s extra needs as they navigated their working day. Instead, these extraordinary humans chose to provide Teo with a sense of belonging and purpose which has catapulted Teo’s self-esteem and has improved our quality of life at home beyond measure.
This cascade of kindness and positivity has all transpired from men who have had no formal education or understanding of inclusion or Brain injuries and how this complex condition presents in an individual.
These men have restored my faith in the community and demonstrated that kindness, compassion, understanding and patience can amount to inclusion for people living with hidden disabilities. Not all hero’s wear capes, some are among us wearing aprons.
Please, next time you are out doing your grocery shopping, give the big supermarkets a miss and head to your friendly Inclusive local Lennox Head Butcher and support these Inclusion Mavericks. Be sure to say hello to my warrior son who is probably wreaking havoc out the back or bossing Trev around.
Big Blessings,
Dee