April 2 was World Autism Awareness Day. In fact, April is Autism Awareness Month in some parts of the world. I was reminded of some of the autistic children and their families, who I worked with at the hospital dental clinic. From the outside, it may have seemed like I was doing all the helping but actually, I have learnt a lot from the children and families I looked after and have been richly blessed by them.
Take for example, Ted and Arnie (names are fictitious to respect privacy). They are brothers. Both primary school aged. Both communicate in their own special ways. Both very different from each other. Little brother Ted loves watching Little Einstein, chewing on toys and lets you know by pinching when he doesn’t like something. Big brother Arnie is a mathematic whizz, reserved, quiet and very observant.
Their wonderful Mama Anne, is a single parent. She is super committed. Although she must’ve been tired and very busy, dealing with all that life has thrown at her, she always brought her boys to the initially fortnightly, then monthly, and then bimonthly dental desensitization and confident building sessions without fail. Anne would also work with the boys at home to make sure oral health practices, become a part of daily routine. This wonderful Mama, found specialized toys to substitute for toothbrushes when Ted couldn’t cope with the toothbrush and shared her finds with me, so I could share with the other families, for whom intense dislike for the toothbrush is also a challenge.
I’ve known this lovely family for several years now. Ted and Arnie are now able to visit the dentist without a fight. Ted will sit in the dental chair for long enough to have his teeth cleaned. Arnie will cooperate with most procedures asked of him, as long as clear explanations and preparations are given beforehand. The only thing that really worries Arnie, is Sponge Bob. I still remember the day when I made this discovery...I wore a bright yellow clinic scrub with Sponge Bob all over it and although I was still the same me that Arnie has always known, Arnie refused to come near me. Sponge Bob got sent away after that day!
Positive changes that we now see, didn’t happen overnight. It took months and months. During this time, I was touched immensely by Anne’s selflessness. I learnt that patience and trust must be there on both sides. I need to be patient with my patients and believe in their hidden potentials. I need to trust that the families will support what I do and play a part, even when I ask them to join in silly song singing or repetitive, sometimes outwardly pointless, exercises. On the other hand, my patients and their families need to trust me and be patient with the processes I guide them through. I also learnt the joy of seeing potential come to fruition. Once there’s trust and patience and understanding, everything is possible. Looking back, the journey with this family was a privilege and knowing Ted, Arnie and Anne have been a God-sent blessing.
Then, there is also pretty and petite Peta (again name is fictitious to respect privacy). Peta was three when we first met. Peta hadn’t began communicating in words yet. Peta didn’t respond to cuddles or kisses, hellos or goodbyes. Peta’s parents are supportive and gentle. They described Peta as highly sensitive to many things, including noises, tastes and smells, and easily frustrated.
Sara (Peta’s Mama,) told me that Peta also have a strong dislike of doctors, nurses, therapists and hairdressers. Peta has never been able to attend an appointment without meltdowns. Peta has not yet been to a dentist. Sara, would love to take Peta to have dental check up regularly but she was not hopeful. Sara told me, if her Paediatrician wasn't so enthusiastic about organising the referral, she would have put off taking Peta to a dentist till much older. (As an aside: thank you to my proactive Paediatrician colleagues for supporting early dental visits).
Three years brought fantastic changes. From not wanting to step into the clinic and hiding behind her parents, to running into the clinic holding my hand; from standing as far away from the dental chair as possible and having dental exams in snippets while playing peek-a-boo, to sitting in the dental chair and opening up her mouth voluntarily for her teeth to be counted, cleaned and sealed (at separate appointments), Peta achieved much more than what her Mama and Papa expected. To us, Peta is incredible.
But you know what touched me the most? I had the privilege of sharing Sara’s joy, when Peta began saying Mama and gave her Mama “kisses and cuddles’ in her own special way. Although our meetings were always brief, I learnt much from Sara: her steadfastness, her “never give up” attitude and her sparkling optimism which shone through like sunshine - even on those “nothing has gone well” days when she had every right to scream and shout and put dental visits in the too hard basket. I learnt from Peta too, that there are many ways to express love and happiness; most of us who expect certain behaviours, are just not creative enough.
Of course, knowing the facts and science are important too. As the saying goes, “knowledge is power”. For example, the Australian Bureau of Statistics recently released some updated information about autism in Australia, which will be used to inform decisions, policies and services. There are also research institutes devoted to exploring the science of autism and a lot of research papers published covering all aspects of autism, from aetiology and diagnosis to intervention and therapy, with the aims of improving understanding, enhancing quality of life and transforming current practices, at the community and population levels. The efforts researchers and scientists make are to be applauded.
Just as important (if not more important), is what happens on a day to day basis. For individuals like little Ted, Arnie and Peta and their families, the fundamental need to be uniquely understood, accepted and appreciated, and to understand, accept and appreciate, far outweighs any population statistics or large scale research.
In this month of April, let’s celebrate the fact that 1) we are all different, 2) we can all learn from each other and 3) we can all make a difference to each other’s lives, at the one-to-another level.