It is an overblown cliche that people with Down’s syndrome are “loving and giving”. If I had a pound for every well meaning person who has said that to me, I’d be living in a bigger house with a bigger kitchen. Maybe even a driveway.
It is always said with good intent and no ill feeling so no offence is taken, yet it always makes my cheeks burn hot with annoyance. It is a compliment so why the irritation?
I am the first to harp on about banishing stereotypes and trying to get the message across that people with Down’s syndrome are more like their parents and families than they are like each other. We are all individuals and are influenced by our experiences and those around us. I also always, rightly or wrongly, feel as though people say it as a kind of compensation. “oh never mind your son is disabled, but they’re so happy, so loving and giving”. Well yes, so is my two-year-old so hopefully I am doing something right (and I can’t even put into words how much the ‘they’ in that sentence grates). Lastly, I feel it conjures up a picture of someone slightly vacant and void of other feelings, someone without an opinion. Trust me, Seb can be just as naughty, determined, mean and stubborn as he can be charming (ask his brother). He has a full range of emotions, just like anyone.
But whilst I cringe at this cliche that is so often passed my way, there is absolutely no doubt that Seb is very sensitive and empathetic, something I hear a lot through other parents and carers of children with the condition.
Seb cannot stop gently stroking and kissing his baby sister. You can tell he adores her. She is the first person he looks for when he gets up in the morning. If she cries he jumps to it, fetching her an array of toys, blankets etc. He wants to change her nappy and her little cries often cause his bottom lip to wobble. If his brother gets told off, Seb is quick to stand up for him – joining him on the naughty step as a mark of solidarity.
We visited Seb’s great grandmother a couple of weekends ago for her 97th birthday. She is old. Very old (obviously). She lives in a care home full of other elderly residents which has the clinical feel and smell of such a place. Her skin and bones is everything you would expect in it’s 98th year on planet Earth. I will be honest, visiting time isn’t the greatest experience and, as she has dementia, she is rarely coherent. All Seb knew was that it was great grandma’s birthday and he threw his arms around her and gave her the tightest hug and kiss. Nothing fazed him, he saw past the shell and into the soul of her being.
After a good play in the park during the summer holidays, we made our way over to the ducks. At the pond were two profoundly disabled adults in their wheelchairs with their carers. Granted, Seb is used to wheelchairs, he spent two days per week at a special school last year and attended a special needs nursery as a toddler. He went up to the first lady in her wheelchair. He softly held her hand and looked deep into her eyes. He stood, still holding on for a minute or so and then gently kissed her. She barely moved, such was the extent of her disability. He then wandered over to the other wheelchair. This time he said “hello man!”. His carer explained to Seb that the man could not speak. Seb, again, held his hand and planted a gentle kiss on the man’s face. The man reacted by repeatedly lifting his arm up and down and his carer told Seb “that means he is very happy”. It was the most incredible moment, all of us practically in tears and me bursting with pride. Seb was totally oblivious to the wave of positivity he had created and bounded off onto the ducks.
I joked just the other day that my walk to pick Seb up from school, minus Seb, takes approximately six minutes. With Seb, the journey home takes 50. This is because he has to stop and converse with every schoolboy/schoolgirl/parent/grandparent/dogwalker/jogger/cyclist/dog he sees. He stops to pick flowers, he hides in bushes, he sees if he can reach blackberries, puts a stick in the stream and just generally soaks up everything he sees. He makes the most of everything.
So, whilst I hate the cliche, there is no doubt my little boy carries a huge amount of empathy in his five-year-old body. He sees the person, the individual, beyond the “difference” and accepts life’s diversity. He focuses on life’s positives, not the negatives. Ironic really, seeing as this message is at the heart of everything I am campaigning to change.
And guess what? He is also loves singing and dancing… just like his mum.
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