• Ali Isaac

Perception


“She’s retarded!”

The word slipped out and hung in the air like a banner between us, dancing with flashing lights and big pointy arrows. There was no clawing it back through the shocked silence which followed.

Such an ugly word, yet it had tumbled from the mouth of a friend in defence of my daughter, not attack. Brief as it was, however, it spoke volumes. For an awkward moment we regarded each other warily, neither of us quite sure how to react. In her shoes, I would have apologised, but she chose to simply look away, guiltily I like to think. There was no retraction, no offer of apology. Wearily, I decided to forgive. After all, it was just a careless throw-away comment between friends, wasn’t it? Just a slip of the tongue. Or was it a sign of something deeper, darker? 

We were sitting at a lovely table in the bright bay window of our local cafe. Carys was much younger then, and discovering her voice, exercising the full range of her vocal chords at extreme decibels. Truthfully? You would not have described it as a pretty, delicate or even tuneful song, but how to stop her without a gag? You can’t reason with a child who has no understanding.

It was early, and while the cafe was empty, it was not a problem. After a while, two older women meandered in. They also sat in the bright bay window. Near us. Too near, in fact. Carys’s squeals and squawks drowned out their attempts at conversation, and probably even their thoughts, too. Naturally, they were none too pleased; their pleasant morning outing and cosy chat had been hijacked by a very noisy, spoiled child whose mother made no effort to control her. They began grumbling, and showering us with disapproving looks. Finally, they got up, lifted their trays and decamped to a quieter table in the furthest corner of the room.

Unaccustomed to dealing with such open contempt, my poor friend spoke up while I burned… for her, for Carys, even for the two hags. “It’s not her fault,” she declared hotly. “She’s retarded.” 

Now, the two women were not only cross, but shamed and humiliated also. Their plans for a pleasant  relaxing morning were completely shattered. Not surprisingly, they soon abandoned all semblance of their coffee date and departed, leaving me wondering where exactly I had gone wrong.

I’m not sure which I felt worse about; my daughter being labelled a retard, being responsible for ruining a stranger’s day, or failing in my duties as a mother. Whatever choice I made, the outcome was still the same; I couldn’t win.

Until that moment, I had never thought of Carys as a retard. The only labels I had ever given her were CFC (the name of her syndrome, Cardiofaciocutaneous) and Special Needs. With the emphasis on ‘special’, of course.

Some might say I am just dressing up something ugly in pretty words, that you can’t make a silk purse out of a pig’s ear. In a way, I kind of agree; what Carys is won’t change whether you callously caller her a retard, or go all pc and politely say she is developmentally delayed. 

But when I look at Carys, I don’t see something ugly. I see a gorgeous little girl, truly filled with love and light. She accepts everyone at face value. She doesn’t judge anyone, or find them lacking. She bestows her love and attention freely every day. And she will love you for the tiniest thing; making a funny sound, singing her a song, a tickle. She doesn’t deserve thoughtless labels and derogatory comments. She has enough challenges to cope with.

It is strange to see how some people perceive those with special needs. I once had a friend who always compared Carys to her dog. Whenever I mentioned something Carys had done, she would immediately say, “Yes, my dog does that!” She took all the silly little songs my boys and I had made up for Carys and sang them to her dog, substituting Carys’s name for that of her dog.

Carys may be developmentally delayed, but she is a happy, beautiful, smiley little human being. You don’t need to look at her through my eyes to see that. How could anyone equate her with their family pet?

When my hyper-sensitivity finally threatened to explode, my husband said, “Is it really worth putting your friendship on the line for the sake of a little thoughtlessness?”

I double-checked at that. Sometimes, I just get so exhausted with all the biting of my tongue I have to do; with always being the considerate, understanding forgiving half of a friendship. Why did that become my role? Why did I have to learn to be better than human? And if the friendship ran so deep, how could she not know what she was doing to me? 

Conor said I didn’t always have to burden myself with perceived insults on Carys’s behalf, but I knew he was wrong. I was her first line of defence, it all had to be filtered through me first.

You would think I could relax in the company of other mothers who have special needs kids, but sadly, this is not always the case. All syndromes are not the same. Delayed development is as unique as each child labelled with it. Some other mothers, whose children suffer from more well known syndromes, seem to assume that my child would benefit from the same treatments as did their child, and cheerfully coerce me into inflicting them on Carys. Call it a mother’s intuition, but I can see what will or won’t work for her, I can sense how she will react… or not. Her lack of achievement is reflected back on me, my negativity is noted, I can see it in their eyes and fixed smiles, and suddenly the tables are turned and this time it’s not Carys they have perceived as inadequate, but me.

The sad thing is, I often feel it in myself. But perception is, by its very nature a subjective and therefore unreliable thing. How I see myself and my daughter, how others see us, is in the end, quite irrelevant; it changes nothing.

All that matters, is that we keep on going; we can’t ever stop, we can’t ever give in. That’s what others need to see, the hard work, the good work, the love, the fun and the joy. Maybe then, people like Carys won’t be perceived as retards any more.

#raresyndrome #specialneeds #retarded #retard #mothering #stress #disability #disabled #CardiofaciocutaneousSyndrome #Downsyndrome #ugly

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About Ali

I recently graduated from Maynooth University with a First Class Honours Bachelor of Arts degree in English and History with a Special Interest in Irish Cultural Heritage. Here is where I write about my passions...

 

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