• Ali Isaac



The man tapped me on the shoulder. I was holding Carys, trying to get her coat on. It was late, she was tired, and we were about to leave. We had spent the evening at the bowling alley, all of us, the two boys, Carys, Conor and myself, and Cathal, Conor’s teenage son from his previous marriage. We had had a really fun night, or as they say here in Ireland, “it was great craic!”

Carys had been doing her usual thing, laughing and smiling, giving us all cuddles and kisses, and screeching with pleasure. She had been taking her turn, her name was up on the screen with her score, she had been stepping up to the ball holding on to mama and dada’s hands, pushing the ball down the contraption, and giggling at all our cheering her on. She didn’t have a clue what she was doing, but she loved all the fuss and attention, the noise, the flashing lights and loud music.

The man who tapped me on the shoulder was the man who worked in the bowling alley. I didn’t like the look of him. He was rough looking, like someone who worked on a traveling funfair. His head was shaved, he had a scar on his cheek and tatoos on his neck. They looked like the homemade ones inked with biro that all the lads who thought they were hard used to do to themselves when I was at school. When he spoke, he revealed gaps where teeth were missing beside others that were black. The truth was he scared me. I remember thinking when we walked in that I wouldn’t like to bump into him on a dark night!

I stared at him in alarm. What did he want? Was he going to pick a fight? Had we somehow offended him? Was he about to insult my daughter, tell us that we shouldn’t be bringing a child like that into a place like this?

He was clasping a soft fluffy teddy. He held it up awkwardly, proffering it to Carys. ” For the child. ” he said, nodding at Carys. She immediately reached out with both hands and grabbed it, bringing it up to her mouth as if she was kissing it. He smiled. We all smiled. But inside, I burned with shame.

What is it that makes someone who looks so mean and hard behave with such thoughtful kindness? And what is it that makes someone who considers herself kind and thoughtful so mean and hard?

I learned a valuable lesson that night. Since then, I have tried really hard to reserve judgement, but it’s very hard not to judge others. It’s so ingrained in us to do so. You might even say it’s instinctive. Perhaps, in very distant times, it was a requirement for survival.

We love our first impressions, don’t we? The first time I became aware of the importance of first impressions was when as a teenager, I started attending job interviews. My spikey multi-coloured Suzi Soux haircut had to go. And all the make-up. And the black velvet knee-length knickerbockers. ( Well, it was the 80’s!!! No regret there! ) But I was giving a first impression of someone who wasn’t me. It was all a deception, a lie. So, being part of the human condition, we realise we can’t always trust our first impressions. And what are first impressions, if not a judgement?

And as parents of a special needs child, we are judged more than most! And so are our children. But we all know how that feels, to a lesser or greater effect. Mothers, remember the ‘ Toddler Tantrum ‘ ? My, how others love to judge this one!

It is actually very clever psychological manipulation on the part of the toddler. You are out doing your Big Shop in Tesco. ( doesn’t it always happen in Tesco? ) The place is crowded. You are halfway through. Toddler decides he is bored. Toddler decides to spice things up a bit. Toddler whinges for sweets or toys, both he knows are readily available here. Toddler knows mum is inconsistent. She will sometimes give in rather than face up to the embarrassment. Mum tries to ignore it. Before you know it, there is a full blown world war three tantrum taking place! The audience mill around, sending disapproving glances at mother and child, tutting their displeasure, grumbling just loud enough so mum can hear what a bad mother they think she is for her lack of control and discipline. She has three options.

Hold her head high with a steely glint in her eye, continue to do her shopping, daring anyone to say something. Go on! Anyone! I dare you!

Or she can give the child whatever it wants.

Or she can abandon her trolley mid-shop and mid-aisle, transport herself and screaming brat back through the busy store thereby creating an even worse scene, after which they both cry in the car all the way home.

In my time, I have tried all three. Let me tell you, all options are most unsatisfactory. All elicit negative judgement from others. And your worst judge is yourself. All you really want to do, is lie down in the aisle and have your own tantrum, like the woman in the tv ad. But of course you don’t.

Imagine how much harder that situation is if the child has special needs. That child has already been judged for the way she looks, or the noises she makes, or the fact she’s in a wheelchair, or whatever else it is that marks her out as different. She finds herself in a scary place full of strangers, bright lights and noise. She needs soothing. She looks to mum for reassurance. Mum is busy picking things off shelves and putting them in the trolley, or checking her list. She cries a bit louder. Mum is getting stressed and anxious, tries to carry on. This is not the response the child is looking for. The wail becomes a tantrum. The child is branded as disruptive by passers by, the mother neglectful for not preventing the situation. You can almost hear their thoughts. Why bring a child like that to a place like this? There must be places for such children. And all you are doing is trying to have a ‘ normal ‘ life, clinging in fact to something trivial and mundane which shows how ‘ normal ‘ your life is, despite having a child which so clearly is not.

But the passers by with the sour faces don’t know the patient hours of physiotherapy you have put into that child just to get her to be able to sit in the trolley seat all by herself. They don’t know how much time you have spent trying to get her to squeeze a sponge so that she is able to curl her little fingers around the trolley handle and hold on. They don’t know the lengths you have gone to just to get her to understand how to use her voice at all to communicate, even if it is just a weird grunt or cry. And they don’t understand the ordeal you face just going out the door to do the shopping in Tesco’s every week.

Once, before I had Carys, I went for a wander around the Pavilion’s shopping centre in Swords with my two boys. The eldest was about three, the youngest still a baby. Firstborn kicked off about something, I don’t remember what, and I decided to leave, but he had entered full blown tantrum phase, and was kicking and screaming uncontrollably. ( Sorry, Cai, but you were. ) I was struggling to carry him and push the buggy, and it was a long old walk back to the car park. Yes, the tears were starting to sting my eyes!

This woman, an older lady, came up to me and took Cai out of my arms. ” I’ll carry him for you, love, you just go on ahead, ” she said with a smile, ” I remember my own being like this from time to time. “

By the time we found the car, Cai had completely calmed down. I strapped him into his carseat, and turned round to thank my saviour, but she was gone. I was so grateful, and have never forgotten her kindness to this day.

If only more people could show such consideration for others, wouldn’t the world be a happier place?

written by Ali, loving mum to Carys, my one true judge

#CFC #raresyndrome #specialneeds #motherhood #firstimpressions #consideration #care #mothering #stress #disability #CardiofaciocutaneousSyndrome #toddlertantrum #Carys

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