Perception

Coffee cup

“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.

11 Comments on “Perception

  1. Ali, I love reading your Carys related blogs, and always panic when you refer to something a friend has said, however having said that, I see Carys as a gorgeous integral part of your family, the Isaacs*aren’t the Isaacs* without every part of the Isaacs* !! I feel that is no less feasible that you know what Carys will like or not like, respond or not respond too, than any other parent. I know that Harry would not like to spend the day at a garden centre, I know he likes chocolate …. It’s easy for me because he tells me, but we learn our children’s behaviours and reactions and make decisions for them all the time, you and Carys communicate in the same way. I am sorry for all the crass insensitive things people say, someone once told me that losing a child is like losing a cat, so I get it! But what I know about you Ali is ‘what doesn’t kill you makes you stronger’ much love Jo xx

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    • Ah my lovely lovely friend! Thank you for joining me on my blog! I never knew you read it… Did you have to join WP to leave a comment? You may as well start a blog of your own then, cos you definitely have a story wirth telling! Lol! But not all those mad stories of me in our youth!!! Thanks Jo for your lovely words, I miss you! And losing a child is like losing a cat? Who the hell said that? I’ll take my fencing sword to them if I ever find out… The one with the blunt end!!! Xxx

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  2. An upsetting incident indeed! What a terrible word to use, and so unnecessary. Any child no matter age, ability, race, gender etc, explores things such as their voice and movement. It’s part of growing up!

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      • Language barrier? Porter is a dark beer. Guinness is the most popular one in the world. (Port is a type of wine.) you can swap it for whatever you like. I’m a speculative fiction author, you can have ambrosia if you like.

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        • Think Ambrosia might be a bit too sweet for me lol! Didnt know porter was a beer! And dont tell anyone, but I cant stand Guinness…

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  3. I hate the “r” word. It’s as bad as the “n” word in my book. It appalls me the way kids toss it around like the sack of turds it is. I know nothing about your daughter, but I like what you said about emphasizing the special! We do that for kids who don’t have obstacles in their life path and why not for all kids. I love reading your stories about Carys, and I think you and other people shedding light on a part of life that was once considered shameful (oh their child isn’t normal) makes us all see things from a different POV. Thank you.

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    • Thank you Jennifer! You are absolutely right… I’m not writing these stories for pity, but for people to see how these kids are normal just like them, that we all want the same things out of life. They live extraordinary lives by default, not by choice, but all they want is to be ordinary like ‘normal’ people. Let’s not make their lives any harder…

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  4. Ali, I have 2 comments to make on your blog today. 1. A close friend would NEVER have labeled Carts with that terrible word. 2. I have a different reference for Carts. I see her totally as Special. Period. I love looking st the pictures you post of her. And when I read your poem about her, I cried. I could see her in every description, I personally, can’t wait to meet her and hopefully get one big hug! You & your family have been so blessed,by her. Relish the time you have with her, no matter how rude & inconsiderate others are. I am still praying daily that you have,more time to spend with that gorgeous blur eyed, curly haired Angel!

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