Chancer

Carys loves sleeping in her safety bed tent.

Carys loves sleeping in her safety bed tent. You can guess the level of her excitement by the blur of movement with her hands!

Carys was crying angrily. She had been crying angrily for three days. I had to give her credit for such a consistent sustained campaign. It was certainly wearing me down.

At midnight, I shut down my lap top, and poked my head through the bedroom door. “Should I go in to her?”

Conor was sitting up playing games on his I-phone. Even he,  normally so expert at falling asleep anywhere, at any time, could not doze through that. “You can try,” he replied wearily. “But I’ve just been in. Nothing I do or say seems to make any difference.”

I knew my presence would not have any effect either, but I just wanted to hold her. I crept quietly through the gloom of her room. I could just make out her thick mop of curly black hair in the shadows of her cot. 

Living with a child who has special needs is at best a challenge, at worst, destructive. Most of the time, it is just plain exhausting.

I held her tight and she quieted somewhat, but I was no fool, I knew what was coming. “Night times are for sleeping,” I whispered hopefully, switching on her musical toy, and we started the whole bed-time routine again.

Sing the nursery rhymes, zip her into her sleeping bag, give her a soft blanket to hold, and she falls asleep happily to the gentle sound of her cuddly classical music teddy… that’s what’s supposed to happen.

But not this time. She exploded into a tempest of renewed crying and yelling. She balled her little hands into rock hard fists and pressed them into my throat. At the same time she planted her little feet into my belly and kicked out with her legs.

How the hell do these kids get so strong, I wondered to myself, as I caught her in my well-honed Ironman grip. Must be a side effect of all that physiotherapy.

I lowered her gently to her bed, zipped up the side of her safety tent, and went to bed myself.

But not to sleep. I couldn’t. Not until I knew she had nodded off first.

This time, it didn’t last long. She went quiet at about quarter to one. I know, because I realised I had been listening so hard to the sound of silence. And if you have read my other posts, you’ll know how silence freaks me out! More than anything, I wanted to get up and check that she was asleep, breathing, alive. But I didn’t dare, for fear of waking her up. So I lay there in the dark and oppressive peace of my sleeping household and fretted.

This was the third time in as many months.

Occasion One; long weekend in a hotel on Co Mayo. We made excuses; she was out of her comfort zone, she lost four of her bottom teeth while we were there. So. Two perfectly good reasons to explain her behaviour.

Occasion Two; we were visiting family back home in England. Again, out of her familiar surroundings. And didn’t she only go and lose two of her top teeth this time? Well, that had to be it… didn’t it?

Occasion Three? No idea! Her teeth were all intact. Her crying had started at school, a place she is very familiar and happy with, surrounded by teachers she adores. Nothing untoward had happened there. She had no temperature. There were no signs of pain; I know her well enough by now to recognise a cry of pain. Besides, I sneaked some Calpol into her food when she wasn’t looking, just in case. Of course, I may as well just have given her Smarties for all the good it did.

We could find nothing wrong.

“She’s a chancer,” muttered Conor darkly.

“What d’you mean?” I countered, immediately on the defensive.

“I mean, she’s playing us,” he replied.

I thought about that. Was she? My little girl was one of life’s innocents, her state of development no more than that of a one year old. Was a one year old really capable of such calculating behaviour? I tried to think back to when the boys were that age, but it was no good. My leaky fragile memory had discarded the negatives of babyhood long ago. There was only room in there for the good stuff.

But I knew that Conor had a way of seeing through a situation to its core. He was good like that. Me, I am always blinded by emotion.

If Carys was crying to get her own way, how could she sustain it through three days and nights? If she was angry about something, what was it, and how was she fueling it? I was, still am, dizzy with dissecting. I have over analysed everything so many times, there is nothing left but a pile of mush where my brain should be. And still I find no answers.

I must have slept, because at quarter to three, I awoke to the song of Carys’s crying. We repeated the whole rigmarole again. And then again at five thirty, but this time Conor just got her up for the day. And despite the lack of sleep, she seemed happier. Guiltily, I sent her to school.

Sometimes, I feel desperate. So desperate, that I have to resort to switching on the vacuum cleaner just to drown out the voice of my crying child. Conor coaches our local kids rugby team, and had taken both boys to a tournament in Mullingar. Carys and I were alone. Normally, I would relish this opportunity for girly togetherness, but by lunch time I couldn’t take any more. Imagine your toddler’s worst tantrum. How long did it last? Half an hour? One hour? Two?

Imagine it carrying on for the guts of three days and nights. How would you feel? Well, I’m no saint; I am just an ordinary Irish mammy who has been given the gift and privilege of raising this special child. But sometimes it’s too much. Sometimes it’s hard to go on. Sometimes, I just can’t cope. Perhaps if I could understand the problem, and do something about it, alleviate her unhappiness in some way, it might be more tolerable. And if I could just get some sleep…

That feels like failure. That feels like me.

So I picked her up, put her in her cot where I knew she was safe and comfortable, pulled the door to, and switched on the vacuum cleaner. Just so I didn’t have to hear. I searched out every escaped dog hair and clump of mud (living in the heart of rural Ireland with a Labrador and two sporty boys, the evidence is never far away, despite my best efforts), just so I didn’t have to think. The house got a very thorough clean until my men came back. By which time I felt a little better. And Daddy’s little girl sobbed into Daddy’s chest about how horrible Mama had been.

Carys can’t walk. She can’t talk. She can’t sign or communicate in any way. She can’t use her hands properly. She can’t really do anything for herself. She is totally at the mercy and whim of those around her. We are just imperfect human beings, full of faults and flaws and selfishness. We try to the best of our ability to interpret her needs and wants. We try to teach her ways of communicating, of being independent, but we’re not good at it, we haven’t yet found the way to make her understand. It’s no wonder she gets upset and angry at times; we have to allow her that.

Carys had no behavioural issues then. I clearly remember her psychologist saying, “I can tell Carys lives in a family where she is sometimes told ‘No’.”

“Really?” I spluttered, surprised but pleased, because I knew how easy it is to spoil a special needs child, to always make allowances and excuses for bad behaviour when in fact, there are none. “How do you know?”

“Because,” he replied solemnly, “she has no behavioural problems.”

I clung gratefully to that small statement. It was evidence that somehow, amid all the chaos, heartbreak and joy of rearing this strange, mysterious little being with whom we shared our lives, I, we, must be doing something right.

I doubt he ever knew the impact his words had on me, but I think I grew a couple of inches that day.

15 Comments on “Chancer

  1. Ali you are a heroine. Really. I have only ever had to cope with an attention seeker with a tremendous chip on her shoulder since she became aware she had a big sister and no matter how many more brothers and sisters she had she was always going to be number two child. It started when she was three which makes nineteen years of yelling and screaming. I haven’t your patience. I get furious. Maybe it would be different if I didn’t think so much of it was conscious mischief-making. Maybe not. You have my deepest admiration anyway.

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    • Thank you, but I still get cross too. I feel anger welling up inside and know I have to get out and release it some other way than at Carys. She wouldnt understand. It wouldnt help or change anything. I wouldnt want to frighten or undermine her trust in me… that would be awful, if she was afraid of me! Its a difficult situation to deal with, as is 2nd child syndrome!!! Sometimes Mal throws that at me too, but mostly hes pretty chilled… thankfully!

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      • It isn’t always easy to control those gut reactions. I wonder if it’s because there’s so much emotion involved in relationships with our children that when we are pushed over the limit by them it can get violent. Don’t talk to me about second child syndrome! You’re lucky if your Mal only hits you with it occasionally!

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  2. Hi Ali,
    once again you have made my head spin with your writing about bringing up Carys – you are so down to earth and realistic in the way you write this.
    The way you explain your trials 🙂 and error experience of learning to communicate with Carys and learning to interpret her expression of likes/dislikes makes me realise that mums of kids with special needs don’t just have to be mums they have to be detectives as well.
    Have you thought of writing a book about this? It would be so inspiring for other families…
    Bye for now, detective Ali
    Best wishes,
    Grace

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    • Thanks Grace! I am indeed trying to write a book about it. I’ve started it so many times but to be honest, I dont think I’ve yet reached the right place emotionally from which to start… what I mean is, I feel I’m still a bit negative, a bit sorry for myself, and still searching for complete acceptance. Until I find that, I dont think I can write in a way that’s properly entertaining AND meaningful enough to make people want to buy a whole book of it lol!!! It does have a title though… Unique.

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  3. It feels counter intuitive clicking the ‘like’ button for this post. I understand the sleepless nights, although ours are only on the odd occasion now. Me and my partner have both agreed that walking away, closing the door and taking some (very) deep breaths is not only okay, but essential at times. There should be a manual for this!

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  4. Oh so sorry Ali. That sounds absolutely miserable, and frustrating. Many, many hugs. Seriously if I lived near you I’d take over for a night so you could sleep. I wish Carys had a way to communicate, too. I’m not sure if one-year-olds are even old enough yet to get the concept of language, or at least of the fact that sounds and symbols can mean something.

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    • Well not having a means of deliberate meaningful communication is frustrating for both of us. Something so simple as understanding say, the meaning of the word hurt, so if she’s crying I could ask where does it hurt and she could point at her head or her belly, or whatever. How lifechanging that would be! Or that she could say or sign bed when shes tired, or hungry when she needs to eat. Its all so much guesswork. Recently I discovered that theres a particular song on her dvd that she doesnt like. Now I know to watch for it and skip past it when it comes on, but can you imagine the amount of detective work it took to figure that one out lol!!!

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  5. It must be very frustrating for you since you are unable to communicate with Carys to find out what she needs or what she is upset about. Three days IS a very long time to cry about something.

    What about increasing the amount of her physical activities during the day – such as walking or some other form of movement – to help her to burn off energy so she will be more tired at night? Is there an indoor pool nearby where she could practice kicking her feet and moving her arms – maybe even playing with water toys? I think I remember you saying that she really likes the water when you take her on vacation. I’m just trying to think of things that might help her relax and sleep better at night. I know that I sleep better and more soundly at night if I have done some form of exercise during the day.

    Maybe she needs or wants more mental stimulation, more mental challenges. I know she has a tablet and she loves it. Does she play learning games on it? I’m just trying to help you brainstorm ideas of things to try so all of you can get some sleep! I’m here for you if you need to talk. Just send me an email.

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    • Thanks Rachele! Actually, I’m starting to think it may be something to do with the way her brain is ‘wired’. I dont know if that’s possible. She shows ‘abnormal ‘ activity in her EEG’s, and suffers from epilepsy, I’m wondering if it is linked, that sometimes the brain cant shut down to allow sleep. I know of other parents with special needs children who’ve had similar episodes. Her doc is arranging a new EEG so maybe we’ll get some answers… not counting on it lol! The other thing I’ve noticed is that it often seems to happen when she is perhaps over stimulated, like on a trip or holiday. It happened a lot when we first moved into this house… maybe its stress.

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  6. Wow mom! You’re really doing an exceptional job with her. Her love for you is deeper than most can fathom. There is no failure in that 🙂

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    • Thank you! I guess I always feel that I could/ should be doing more. I think all parents feel that way at times. But you’re right, she has so much love, for everyone.

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