I see you looking at my son …. and I’m fine with it

I see you looking at my little boy. I see you looking at him, and then looking at me, as I’m looking at you looking at him.  Then you quickly look away, but steal another look at him.  And at me.

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What do you see when you look at him? Do you see a disabled child? A child who is awkwardly bottom-shuffling along the floor of the soft-play trying with all his might to climb a foot-high step? A little boy that is attempting to feed himself custard, and it’s going all over his face and clothes?  A child that’s being pushed around in an adapted trike while we wait for the wheelchair referral?

You’re thinking, I wonder why his mum doesn’t help him over that step. I wish he would get out of my Tommy’s way! How can she let him make such a mess; why doesn’t she wipe his face? Why is he eating custard and not a proper meal? Why is he being pushed around in that thing, I wonder why he isn’t walking? Poor boy.  Poor family.

Look a bit closer. What do you really see?  I’ll tell you what I see.  A child who has to learn the hard way, learn to let all the other kids push past him, knock into him, step on his fingers.  A child whose neural pathways are carrying scrambled messages from his brain to his legs.  A child who has bravely tolerated two years of feeding therapy and now eats some foods, against the odds, even though the muscles in his mouth don’t work properly.   A child that sits patiently in the trike even though he wants to be off, on his bottom, exploring the world, and doesn’t understand why it’s not always appropriate.

Consider this. While your child has been running around at playschool making potato prints, mine has been making best friends with six different therapists.  While you have been back at work and pondering over baby number two I have been juggling part-time work with full-time therapy programmes.  While you can get a baby-sitter for a night out, we have to get friends to come to us, as we can’t rely on just anyone to understand his needs like we can.  And talking of friends, imagine if some of your closest friends became increasingly distant because they don’t know how to cope with, or react to, your child.

I don’t mind you looking. I don’t mind you staring.  I don’t mind you nudging your mate and talking. I don’t even mind what you are thinking.  I did mind, for a long time, and it did me no good.  I have now reached a place where I can happily look at you, looking at my son, and look you in the eye, and smile.  Because he’s mine.  He’s all mine, I get to take him home and watch him grow, develop and flourish.  I’m sorry for you, because you’ll never get that divine feeling, that opportunity to watch something amazing happen.

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Let’s put it into perspective. You probably don’t remember the first time your child independently climbed up the steps and slid down the slide.  Box ticked!  Move on to the next milestone.  Well, I can certainly remember the joyous first time we could safely release my son from the top of the slide, to slide down on his own.  While you were applauding your child for counting to ten in French, we were celebrating our son for pronouncing his first consonants.  Not necessarily in English.

I feel bad for you. It’s hard not to look, it’s hard not to judge, and it’s hard not to wonder.  But it is easy to show empathy and compassion.  If you are curious – talk to me! If you are offended – don’t look!

You make me feel empowered. Empowered by your awkwardness, your embarrassment, your irritation.  I simply feel proud.  Proud to know the real story and the real boy, and be a part of his really amazing journey.

I am also aware that for every insensitive and unkind person, there are a dozen who are genuinely interested, impressed, endeared or enamoured by my son. Those that can see through the spinal brace, inappropriate behaviour and delayed speech, and see the marvellous little man underneath.  On the scarce days that I strike up conversations with these people, it really makes my day.  I take comfort in the fact that we have made a tiny yet significant impact on their life.

I wish more people could be more accepting of the multi-dimensional world around them. These days it seems that it is more socially acceptable to be cold, quiet and vapid than to be sensitive, open and amicable.

So, next time you steal a look at him, then back at me, and then sheepishly look away, perhaps go home and look in the mirror. What do you see?

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Published by

tetraspecial

I was launched into the world of special needs on New Year's Eve 2012, on the birth of my son, Jenson. He is fabulous, sprightly and loving, and has redefined our lives. I am now a 'qualified by experience' PA, therapist, clinician, secretary, taxi, nurse, and in my spare time I am trying to be a good mummy. I work in an audit role for the NHS and along with my husband run an accountancy business from home. It's a busy household but Jenson's extra genetic material seems to have given us all extra special powers!

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