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A letter to … The woman who stared at our disabled son

This article is more than 8 years old
The letter you always wanted to write

You weren’t there as I watched the tears flow from my partner’s face when our son was diagnosed as severely autistic and we were informed he would never whisper our names, say I love you or even proffer a kiss. You are never there when our son wakes up every hour on the hour struggling to sleep because of his melatonin levels or when he has a meltdown and needs skin-to-skin contact to soothe his woes.

Given that you know so little about us it seems strange that you – and people like you – are always there whenever we leave the house. The sideways glances at the supermarket, a muted tut when our son squeals at a restaurant or a dissecting stare while we play at the park. We were told that finding out you have a severely disabled child is akin to a family bereavement and despite our best efforts we die a little inside every time you focus your judgmental gaze.

As our son gets older and the differences between him and his neurotypical peers becomes more evident, the stares have become more pronounced, the tuts get louder and the whispered comments more pointed. Yes, we know our son is different and we’d be happy to explain those differences if you took a step out of the shadows and said hello. We love our son and spend the majority of our time trying to unlock the puzzle that is his needs. Every trip we take out is a little victory of planning, preparation, perspiration or even sheer determination.

Sometimes when I see the hurt on my partner’s face, I steel myself to confront people like you – but how do I address someone who thinks my child is a figure of fun to be objectified, categorised and pilloried with a disapproving nod? How do I ask you to stop your son from mimicking the noises my child makes while you casually label him as “special”, “different” or “naughty”? I often stand bewildered waiting for an apology that never comes wondering if I have much more tongue left to bite.

If you’d asked about the noises he makes I could tell you how my heart soared the first time my son uttered some loosely collected sounds that resembled the word Dad. Or how we use pictures and a limited vocabulary to aid his understanding, constantly repeating words and phrases in the hope that some language will stick.

I might also explain how although he can’t communicate to us verbally, the sideways glances, the loud echoing of sounds and running around are all signs that he is happy and his senses are being stimulated by the surrounding environment.

We know that you don’t know about the missed family events, non-existent holidays, the birthday party invitations that never arrive or the constant sleep deprivation that having a severely autistic child entails, but you do now.

Please don’t stare. Join in with us or leave us alone to enjoy our son. We feel we’ve earned it.

George’s dad

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