Special, not ‘special’

So today (April 2nd) is World Autism Awareness Day, which is the standout ‘Light it up Blue’ day in Autism Awareness Month. As the Autism Spectrum is so varied, and research into causes, management tactics, behavioural patterns, and possible ‘cures’ ongoing, there is still so much that is unknown and therefore socially misunderstood about the so-called disorder.

Autism is generally characterised by a range of symptoms which have created challenges with social skills, speech and nonverbal communication, certain repetitive patterns, and a heightened level of sensory sensitivity. Symptoms will typically occur anywhere between the ages of 18 months and three years old, often with a regression in educational and behavioural growth. Children with autism will often times make their frustrations heard through a tantrum, which causes distress to the child and parent alike. Research has shown that early intervention of the disorder (I really hate using that word) can change the course of autism and create a more easily manageable situation (if there is such a thing).

My favourite boy in the world was diagnosed around the 18 month/2 year mark. Until then he was your average blonde haired boy; had started to talk, loved the Wiggles and who sometimes threw an epic tantrum….. Then the words disappeared, the tantrums got worse and his love of the Wiggles became an obsession. His eye contact was non-existent,  he stopped wearing clothes, and forget even thinking about doing the shopping with him in tow.

If my friend hadn’t had such stoic support from her own mother, I am fearful of how she and ‘Sparky’ (my nickname for the firecracker who brightened my life) would have coped in the early days. Her mum was militant in ordering my friend to early intervention classes and made the entire experience that much more stressful for my friend (and myself too as her support and Spark’s substitute). My friend can now recognise that this was her mum’s way of coping, and her hectic way of supporting. I adore her and often think of her in this time as doing all she knew how to do best; love and protect her cubs with the ferocity of a lioness, no matter how tough she thought that love should be.

I feel blessed that I was able to be there and be a part of those years of Sparky’s life, even more, blessed that he didn’t just allow me to be there, but that I was one of his few ‘Chosen’. We would sing and dance to Wiggles together, run up and down the hallway or the backyard in opposite directions. I could somehow calm him when he was mid-breakdown, and would often lie and sing to him whilst patting his head cause Aunty Nic had the magic touch in getting him to sleep.

His mum worked as much as she could, and I filled in the rest. She undertook research into diet, and swapped his bottles from cow to rice milk (yuck!), cut out gluten and refined sugars. The effects were almost instantaneous! He did not breakdown as much, and if/when he did, the severity of each breakdown was so much less. He still struggled with eye contact, but would bless you with his beautiful smiley gaze every once in a while. Boy did that melt your heart. Can only imagine how my friend’s heart felt the day he finally said ‘mum’ and on the day ‘love you’ came out of that cherubby big head (family joke, I say it with love).

The will and determination in my friend has not amazed me as such, cause I knew she had it in her, but I admire her for it. She has researched and found, applied, tried again so many different avenues in order to find the very best for Spark. As this is real life, it certainly has not been a straight and orderly path. But, no matter what, she continues to stand up, dust herself off, and rise above adversity in order to give Sparky all he deserves and can achieve.

Sparky’s greatest moment came when he started school. He took to schooling like a duck to water. Not just the routine of it, but perhaps because he had to learn how to be in another context away from his mum and sisters. He had already taught himself lines from Wiggles videos, not to mention the wicked dance moves. But the further advancements that a change in place and socialisation brought forward in Sparky were melting our hearts once again. By the time he was in year 1 he could write so many different words.

This year my boy turns 12. He is enrolled in high school for next year. Yes, I love him because he is my faux-nephew. Yes I love him because he and I bonded when he was so young and his mum calls us soul-mates. And I do consistently refer to his autism. But autism does not define him. Autism does not give him the heart full of love, and mind full of wonder. It does not make him give the best hugs ever. It may have held him back socially and educationally, but he is one of the smartest, most wily, funny and loving people I know. The boy I can kick through autumn leaves with, that I can take down to the beach for the day and watch him thrive in his sensory wonderland.

I read an article this morning talking about how the UN sanctioned Autism Awareness Month is all but obsolete. She says we don’t need awareness, people know about autism. But no, no they don’t. People still put limitations on what autistic people can do and achieve. Not all people, but enough in society to warrant the continuation of autism awareness. The day that myself or my friend can walk through town with Sparky singing and dancing (I don’t care and just sing with him) or kicking up a fuss in his broken speech in public without people giving you a look demanding explanation for their own misjudgment, is the day awareness will be complete. To these people I say “Make yourself aware. Ask what ‘light it up blue’ means.”

I’m so thankful that he chooses you and you don’t get to choose him. Because he’s not ‘special’, he’s special

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