My son has a rare cranio-facial condition called Goldenhar Syndrome as well as Autism. I have spoken before about the reasons why that combination is a blessing at times but undoubtedly people feel a few things when they look at us. Particularly on the days when one of Harrys melt downs means I can be found physically restraining my son who is rapidly becoming as tall as me. I see pity and I see concern on the faces of strangers. I can only guess what they are thinking. Maybe they wonder how well Harry copes day to day, maybe they fleetingly muse over what life will be like for him as an adult before they return to their own lives. I can’t possibly know, but what I do know for certain is that when they look at my boy there are some things that they simply could never know.
He taught himself to play the piano
He was tinkering on the piano and playing nursery rhymes when he was just 2 years old despite having one ear and one eye. He doesn’t read music, he simply hears a tune and turns to the predictable notes of the piano to replicate it. Hes amazing and stuns everyone who watches him.
He taught himself all his letters and numbers using phonic boards
Long before his neuro typical twin brother knew the alphabet Harry could point to the correct letters and numbers when asked. Like with the piano keys, the concept of letters and numbers never changes and so an autistic mind excels with the predictable patterns.
He can spell two words without needing help.
The most important word in the world for my boy to know is his own name. He can write Harry without any prompting. The second word might be because it is short, or maybe because its simple but I prefer to think that he writes it because he loves it. Harry also writes ‘Mum’ (Altogether now…awwwww)
He loves cuddles and kisses
There is a stereotypical idea that children with autism struggle to show affection but right from birth, Harry has enjoyed a cuddle. I remember walking into the Special Care Baby Unit one morning when after my boys had made their premature entrance to the world and the nurse saying “that one needs food all the time and that one needs lots of cuddles” which has proven very true. And let me tell you, when Harry hugs you, he REALLY hugs you – with his arms and his heart.
He has a wicked sense of humour
From shutting himself in the kitchen to steal biscuits, creeping into my bed while with his eyes covered as if “I cant see you so you cant see me” to laughing when he was told off recently before telling Andrew “Bye now” when he didn’t want to hear why he had been silly, this boys sense of humour makes it very difficult to be mad with him for long. Im sure he doesn’t mean to be funny but he definitely makes us laugh a lot! I laugh with my boy, not at him – most of the time.
He melts me every night
Harrys life is ruled by routine and he finds comfort in familiar things, places, people and phrases. Every night for months I have kissed his head as he lies down to sleep and said “Sweet dreams.” Now, as I tuck him in, he says it to me and although I know its simply a reaction to a familiar part of his day, it never fails to melt me.
He is incredibly determined.
When Harry wants something, he wants it and very little will stand in his way. He has even gone so far as sneaking out of the house and running across a main road when he had a fascination with the petrol station opposite but you’ll need to buy my book to find out what happened there! He’s also developed an interest in the clothes he wears and prefers his brothers selection so you can find me most weekend mornings wrestling with him to leave his brothers chosen outfit in the wardrobe . It can be frustrating and exhausting but its also encouraging and fantastic that he has that sense of determination and I know he will need it as he goes through life.
He has his own opinion now.
I’ve mentioned the clothes he suddenly prefers but Harry has also recently developed a preference for other things; different foods, places, activities. He has always been fairly placid and easy enough to dress and care for but suddenly hes become this sort of Mariah Carey diva who knows exactly what he wants and isn’t afraid to demand it *flicks hair* Again, this presents its own challenges but I love that my son who I often called my eternal boy, is growing up.
Has the potential to be a shop lifter!
Harry loves to shop – mainly anywhere with a toy section. He knows exactly what he wants (See the ‘opinions’ point) and will NOT leave a shop without it (See ‘determined’). More than once after I have told him that he has spent his allowance or I don’t have the money to spend on a vtech drum he wont look at once its bought, he has tried to stuff it into my bag anyway as if to say “No worries, pop it in there and we wont need to pay!” He has also cottoned on to the phrase I have used when out and about that “We need to give the money to the lady before we take it home” (apologies to equally wonderful and competent male cashiers) Harry will now grab what he wants off the shelves like some sort of ram raid and yell “Lady! Lady!” as if someone will miraculously come to him in the toy aisle so we can pay (See, Mariah!)
That he created a fierce mother from the broken pieces of a woman in shock.
Ah, the big one. Yes, you will see that I sometimes struggle to physically support him through a meltdown. Occasionally he may bump into people as he tears at high speed down an aisle with me in hot pursuit and people often smile at me when they hear me chatting away to a boy who can’t yet have a conversation in return. People see my challenges but there is so much they couldn’t possibly see about the beauty and the magic of my boy. Above all, I am grateful every day for his quirky ways and the mother he created in me when I feared that I simply wouldn’t be enough for the premature baby who changed my world. Never judge a book by its cover…or in Harrys case, a determined, loving diva by his unique face.