• Ali Isaac


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.

#screaming #CFC #raresyndrome #specialneeds #spoiledchild #frustration #crying #insomnia #badbehaviour #mothering #tantrum #disability #disabled #lackofsleep #CardiofaciocutaneousSyndrome #behaviouralproblems #desperation

Recent Posts

See All