Acceptance: Skin-Deep and Empty Words

Today is a significant one in world history. No matter which side of the fence we stand on, we have no choice but to accept. Around the world, governments are also preparing to show acceptance. And yet, there seems to be a global sense of uncertainty, and fear.

I fear for the minorities. I fear for acceptance. For tolerance. And I am reminded of something I wrote a few years ago for 1000 voices speak for compassion, which I think is as relevant today as it was then, if not more so.


I don’t like moths. I don’t like how they enter my house uninvited, fluttering blindly about, and cluster in a seething panic around any available light source. The frenzied flapping of their dull, tattered wings gives me the creeps.

But I love butterflies. When they gate-crash, I feel privileged, blessed, and patiently herd them out to freedom for fear their short, beautiful lives might meet an untimely end within my four walls.

When I found a glorious creature with stunning red and black markings walking determinedly across my doormat one spring morning, I assumed he was a newly hatched butterfly ready to test his wings. I opened the door respectfully, and watched him take flight.

Imagine my surprise when I discovered he was actually a day-flying cinnabar moth. Who knew that moths could be so gorgeous, or that some of them flew by day and not in the shadow of night?

I was struck, then, by my own superficiality. Me, who should know better. I know how it feels to be judged on appearance, and to be found lacking. I know how it feels to be probed skin-deep, and rejected. Is the sum of our worth truly wrapped up in the symmetry of our faces  and the slender lines of our bodies?

I suspect it’s a primeval thing, some kind of survival skill buried deep within that well of instinctual behaviour we no longer understand or need. Perhaps surrounding ourselves with beauty masks something ugly inside that we try to suppress. Perhaps associating with the beautiful makes us feel good about ourselves. Maybe it ‘rubs off on us’.

Of course, we’re in denial. We say brave words, like ‘Beauty is skin-deep’, or ‘Beauty is in the eye of the beholder’, or ‘Sticks and stones may break our bones but words will never hurt us.’ Admit it; they’re just empty words. We don’t live by them. And words hold enormous power. Too many young people have ended their lives after being bullied. Abused with words. They didn’t feel accepted.

Acceptance, whether it’s social or personal, requires approval and a non-judgmental state of mind. Being accepted gives us a sense of belonging. Ultimately, that’s what we all want. It’s what we’re all searching for in our own convoluted ways. But does being beautiful increase the chances of being accepted?

I was bullied at school, for many reasons; I wore thick glasses with National Health frames (definitely not beautiful), I didn’t speak with the local accent, nor was I a local girl, and I arrived in school only six weeks before the end of the school year. Bonds and social groups had already been formed. There was no peer pressure to try and ‘fit in’; I was a stranger, I looked and sounded different, and I simply wasn’t wanted. Boy, did they let me know it.

When I left school, I rebelled against this unfriendly society which had not found it possible to accept me. I defied their traditional, conservative, insular attitude.

It was the 80s: electronic music, big hair, frilly clothes and wild makeup which looked more like art. These young people were different. The disguise made us all look and feel beautiful. We were connected, united. I hid behind this flamboyant façade: it was an acceptance of sorts.

But I had to grow up. I didn’t want to work in an office or in a factory, so I joined the RAF instead. The RAF didn’t want us to be different, individual, unique; they wanted us all to be the same, their kind of same. Thrown into what seemed like chaos to us, a disparate band of females learned to pull together, accept one another, and become a team. Then the RAF split us up and sent us reeling in different directions, but it didn’t matter, because by then we were part of the machine. Acceptance was built in.

The tides of time washed me in its waters, sometimes soothing, sometimes stormy, but always eventful. I drifted, adding the roles of wife and mother to life’s CV. That’s when I ran aground, the meaning of acceptance suddenly rocketing to a whole new level.

Carys came into our lives. She was born with a rare syndrome, but we counted ourselves lucky, for she was never expected to live at all. Two days later, a tangle of blood vessels began to bloom on her forehead. It was the beginnings of a birthmark, a haemangioma, and it grew with a speed and virulence which astounded me.

Day by day it expanded, turning a deep, shiny red, a sinister parasite claiming its place on my daughter’s face. The surface began to wrinkle and pucker, forming little hills and valleys, a menacing roseate island in the soft smooth sea of her forehead.

People love to look at babies, have you noticed? A brief dip into Facebook or Pinterest throws up endless rounds of cute or amusing baby pictures with associated entertaining quotes. When my two sons were babies, I received many smiles and compliments from strangers, who looked into the stroller upon my boys’ perfect faces.

That didn’t happen with Carys. Oh, they gawped eagerly enough. Sometimes, they raised their eyes to mine in shock. Mostly, they just craned their necks and stared at my little girl as if she was something they had just scraped off the bottom of their shoe.

I can’t describe the pain that ripped through me. She was so innocent, had done nothing to anyone, just fought fiercely against all the odds to cling to the dirty, ragged scrap of life tossed her way.

When she was only four months old, she endured a long surgery to remove this ugly complex lump in the hope of saving her sight. With the haemangioma gone, I thought we would simply disappear into the masses, nothing worth seeing here. But I was wrong.

The wound developed a thick black crust. The edges were loose, and constantly seeped, but the doctors were happy, it was progressing exactly as they wanted. Now when people stared at Carys, their gaze quickly shifted to us, her parents, and I could see what they were thinking; were we simply neglectful parents, or abusive ones?

Carys, and other children like her, fall into a minority group which society as a whole has not yet found itself able to fully accept. True acceptance would, by definition, require the majority to allow the full integration and participation of the minority in all aspects of society. Even in these enlightened times, that doesn’t happen.

For example, Carys must go to a ‘special school’, which is tucked well away from the community where she lives. There is no other option. I resent that. Although the school is excellent, I would like her to attend our local school, which ideally should have an attached special care unit for disabled children.

How wonderful if Carys could be visited by her brothers during her day at school; how wonderful if the children from the mainstream school could integrate with the disabled children, help them, play with them at break, grow up never being afraid of them or developing ignorance and prejudice against them.

It’s as if society doesn’t want to be affronted by the sight, or blight, of disabled people. We hide them away and pretend they don’t exist. Perhaps their physical deformity reminds us of our own inner ugliness, something we’d rather ignore.

When participation in society is confined to only certain areas, then the majority is only practicing tolerance, not true acceptance. Tolerance and acceptance are not the same.

A decade later, Carys’s haemangioma is just a shadow of its former self; the scar has faded, but she still looks obviously ‘different’. The dangers of her syndrome are hidden within, where they can’t be seen and gawked at. People still stare, but not as much. I am less inclined to accept rudeness, but am also better able to let it go; I have grown, learned to tolerate and yes, accept these episodes of weakness from strangers.

Being Carys’s parent has broken my heart many times over, and filled and refilled it with more love and hope than I ever thought possible. She has taught me so much about what’s really important.

I want many things out of life for my sons. I work hard to set their feet on the path to achieving them. For Carys, the list is much shorter and simpler; happiness, love and a life as free from pain as possible.

And most of all, acceptance. Not just for Carys, and other children like her, but for all living beings.

Conor Kelly and The Fenian King | An Excerpt

So sorry if anyone just received a blank post notification from me… somehow in the seconds between finishing this post and hitting the publish button, wordpress managed to lose my entire content. There have been some weird things going on at wordpress lately,,, gremlins in the machine?

Ali Isaac - Conor Kelly and the Fenian King

Hugh from Hugh’s Views and News has very kindly featured my book, Conor Kelly and the Fenian King as his Book of the Month… cue sparkly lights and glitter! Yaaay! Thanks, Hugh! In tandem with this, you can find the book at only 99c/ 99p on Amazon, and completely FREE on Smashwords and associated retailers. And now, here is an excerpt…


Chapter Forty Two – The Disappeared

the present day…

 

Conor coughed and spluttered as the dust rose in clouds around him, then admonished himself; his body and lungs were safe in his aunt’s little Micra at the bottom of the hill. As a free roaming spirit, he couldn’t be harmed by clouds of dust, or collapsing masonry, or landslides, or whatever it was that had caused Sidhe Finn to cave in.

But Ciara could. What if she was killed, crushed beneath a fallen orthostat? What if…

Conor felt waves of panic swell inexorably through him like the tides of the sea. He couldn’t find her. He couldn’t see her. Even with his spirit eyes and his supernatural senses, he couldn’t detect any sign of her presence. It was as if she had simply vanished.

But that was impossible. Maybe she had got up and wandered outside, dazed and confused. Maybe she had a head injury, and didn’t know where she was. She could be out there, floundering about in a state of bewilderment.

Oh my God! She could fall off the cliff and plunge to an untimely death in the quarry…

He had to get out, had to find her. He took another quick look around. Many of the orthostats had fallen inward, held up from the floor only by the central pedestal which supported the coffin. A couple of the ancient stones had cracked in two. The coffin had been smashed into matchwood, but Conor saw no evidence of bones. Fortunately, much of the loose rubble which traditionally comprised the infill between the chamber ceiling and the mound had been removed by Aylmer’s builders, and replaced with blocks and mortar, thus forming a secure foundation for the tower. The old mortar had cracked and crumbled in places, releasing some of its bricks, but had mostly held firm. The devastation was not as terrible as he had expected.

But his heart jumped into his mouth when he realised that one huge, carved orthostat had collapsed directly onto the spot where Ciara had crouched the last time he had seen her. Its fall had not been halted by the softness of a body beneath it; no pool of blood lay spreading on the ground around it. The relief Conor felt on observing that was short-lived. Where was she?

Beside the stone, the flagstone with the Ogham symbol lay smashed into several pieces. It had been lifted from its resting place, and placed beside a small pit. Which, Conor noted with disappointment, was completely empty. Had Ciara found the missing mouthpiece and removed it? Or had she lifted the flagstone to find only an empty space and a sense of despair? He had to find her. Where was she?

Convinced at last that the chamber was completely empty, Conor allowed himself to drift up through the ceiling and into the circular chamber above. The stairs leading down from the entrance had collapsed into nothing more than an unstable pile of rock. He floated over it and out through the devastated doorway.

It was dark. The weak wash of moon and stars showed Conor that the hillside was deserted. After the explosions and collapse of the tower, it was eerily silent, almost as if nature itself was shocked at this traumatic turn of events.

He wandered around the remains of the tower, dejected and overwhelmed with guilt. There was no sign of Ciara.

Am I to blame? Did I cause this with the ferocity of my lightning attack on the tower? Or was it the quarry? I’m surprised the hill didn’t collapse years ago after such extensive mining. Surely it was an accident just waiting to happen; we were just in the wrong place at the wrong time…weren’t we?

Pushing his way carefully between the yellow gorse bushes, Conor stood on the edge of the cliff and contemplated the drop. Was Ciara down there, broken and battered and bleeding? Far beneath him, a tear trailed down his face as, in the car, his inert body responded to his desolation.

The only way to find out was to leap down after her. Even knowing that he could not fall or be hurt, it took Conor a good few moments to find the courage to jump over the edge. He found it much easier to control his descent this time around. As the ground rushed up to meet him, he saw that the quarry men were running about in a panic. Alarms were sounding, people were shouting, but the drills were silent, and the trucks which transported rock and rubble lay abandoned.

Hmmm…looks like there’s been a bit of a disaster down here.

Conor levelled out a couple of metres from the ground and glided slowly along the base of the cliff, searching for Ciara. Eventually, elated, he had to conclude she had not fallen. His only other option was to search the path on his way back to the car. Perhaps she was already waiting there for him. With his spirits lifting, Conor retraced his journey. But Ciara was not there.

For what felt like the hundredth time, he wondered where on earth she was.

The car was waiting on the far side of the car park, just as they’d left it. Conor felt anxious now; for Ciara, and also for himself. His body was lying in wait for him on the back seat, but what if he couldn’t get back into it? He hadn’t stopped to contemplate how that part of the process was achieved. He might not be able to do it. What then? He had been outside of his body for quite a long time. He might not be able to readjust to its rhythms and limitations.

He went first to the front of the car, half expecting to see Ciara sitting there, impatiently waiting for him. She wasn’t.

What do I do now? Do I re-join my body, and wait? Or do I go out looking for her again? I’m really tied by my mobility if I re-enter my body at this stage. But the longer I leave it, the harder it’s going to get.

Conor wavered between his choices. Then the decision was snatched from him. When he looked in at the rear window, his body was gone.

smashwords-button  kindle-button


allen-collageAylmer’s Folly and Sidhe Fionn are real places. I visited them when I was researching for this book. You can read about them in my post, Almu | Home of Irish Legendary Hero Fionn mac Cumhall.


Want more mythology straight to your inbox? Sign up to my mailing list.

COMING SOON: Conor Kelly’s Guide to Ireland’s Ancient Places, an exclusive free gift for all newsletter subscribers, featuring all the sites and locations upon which The Tir na Nog Trilogy is based. WANT ONE? It’s FREE, and coming to a newsletter near you soon! All you have to do is sign up to my Marvellous Myths newsletter.

Or try one of these…

The Joy of Walking and Making Sense of the Senses

Sometimes, things happen in our lives that fill us with deep joy; we can feel it swelling and expanding within us until it is so great, we think we might just burst, because we can’t possibly contain it. Have you ever had that feeling?

But it carries on growing regardless, because it’s not something bound by our physical limitations; it exists within our  soul. And quite often its caused by the little things in life, not that lottery win, or a new car, or a designer handbag that cost more than a house.

It’s climbing a mountain, admiring a beautiful view, inhaling the fragrance of a beautiful flower, feeling the sun on your face, the impromptu hug from a child.

Two weekends ago, I had this feeling walking through the Burren. I tried to capture it in my pictures. I don’t know if I did, but it doesn’t really matter. My senses still remember.

My walking enabled me to be in the Burren, and my senses enabled me to experience it. And it was truly an unforgettable gift.

Imagine if you can’t walk. Imagine if your senses interpret everything around you all wrong. Your life is limited already by being immobile; just think for a moment how that would impact everything you do in your normal daily life.

You wake up. You need to go to the toilet for your morning pee, but you can’t get out of bed. You can’t drive to work. You can’t walk down to the park at lunchtime to eat your sandwich in the sun. You can’t get into the bank because there is a step. The lift is out of order in the department store, so you can’t shop. You can’t cross the road because the curb is too high. There’s only one disabled trolley at the supermarket, and it’s already in use, so you can only buy what you can fit on your lap. The Burren? Forget it!

Now imagine how it would be if your senses gave you all the wrong information. The sound of the shower is like a roaring waterfall. The chink of keys is like a church bell ringing in your head. The kiss of a loved one feels like the unbearable tickling of a feather. Someone stroking your hair feels like they’ve just yanked a handful out of your head. The gentle blowing of the breeze in your face feels like it’s stolen your breath away and you’re suffocating. The tiled floor feels like razor blades beneath your feet.

Imagine you’re taken out to dinner in a restaurant. Firstly, everything is unfamiliar, and that’s enough to feel like the carpet has been tugged from under you. The chair is strange and uncomfortable. You’re hungry, but you have to wait till someone brings your food, then it’s so hot it feels like flames swilling around your mouth. It’s too lumpy, and feels like trying to swallow rocks. There are too many people, too many strangers, and the swirling of their voices all around you sounds like the roaring of lions. The powerful smells of so many different foods feels like trying to inhale pungent soup and makes you gag. Then the waitress, who you don’t know, tries to touch your curls, because they’re so cute, and it feels like claws raking through your hair. And all this when it’s nearly your bed time. It’s overwhelming.

That’s what it has been like for Carys all her life, and I never fully understood. No one did. We just wanted to try and have a normal life and include her in everything. She reacted with tantrums and crying. What else could she do?

But what a difference a year makes. Especially when you have the right people in your life who understand, and can help you.

This time last year, Carys couldn’t walk. Look at her now. See the joy in her face? Imagine the joy in mine. I know you can hear it in my voice. Carys loves walking. It’s not easy for her, but she enjoys it and wants to do it. It will never be as natural for her as it is for you and I, she will never be able to spend a weekend hiking in the Burren, but when she gets on her feet, she pulls her hands free so she can go it alone. She stumbles often. She loses her balance. But she walks. And walking makes her smile.

Not only that, but she is practising walking bare-foot over lots of different textures. She likes walking on grass. She likes walking on sand. She doesn’t like tiles, she goes back onto tip toes then. She can walk up steps so long as she has a hand to hold, but not down them yet. She can walk up and down ramps, but struggles with uneven surfaces. Now, we are working on transitioning; that means getting up from the floor, and getting down safely. I have a feeling when she has mastered transitioning, we will see a huge leap in her confidence and ability… I’ll need eyes in the back of my head, lol!

Teaching Carys to walk has been hard enough. But the senses, how on earth do we retrain them? With a lot of hard work, dedication, determination, consistency, and some therapies that seem totally weird. It’s not about exposure, like you might expect. It’s about re-directing the sensory input into the right pathway so the brain can interpret it correctly. Not everyone is convinced it works. But it is working for Carys. She is like a different child. In a good way!

We started with the Wilbarger brushing and joint compressions. Every 90 minutes during Carys’s waking hours. After a couple of months, we dropped down to five times a day followed by 10 minutes of sensory activities, such as walking, lateral swinging in a cocoon swing, deep pressure massage, back presses, wrapping her tightly in a blanket.

A couple of months later, we started vibratory work. Carys has something called a Z-vibe. It’s a little vibrating tube, roughly the size of a pen, which you can add different textured ends to. We started introducing this to her hands and feet, eventually working closer to her head and face. Then we tried putting it in her mouth. Now she has a spoon which goes on the end, and eats her food with it. From her teacher; she refuses it from me!

The idea is that this desensitizes her mouth, and wakes up her taste-buds, her chewing, and her swallowing reflex. This is all about getting her to feed herself. We are a loooong way from achieving that goal yet, but she has already improved significantly.

The latest therapies involve bathing, which takes three people as it requires applying deep pressure massage to the head while trying to wash her hair. Carys is very protective of her head, and hates water going anywhere near her head. Also, her weighted vest just arrived, which she must wear for half hour intervals throughout the day.

It sounds like a lot of work, and it is, for Carys as well as me and her carers and teachers at school. Is it worth it? Definitely! Carys is much calmer, confident and more settled. She has far fewer tantrums. In fact, when she has a tantrum now, I sit her on my lap and hold her  very very tightly, and she will stop within five minutes! It’s the deep pressure of being held so tightly which calms her. Previously, her tantrums could go on for hours.

You might think that this would spoil her, that she would throw a tantrum to get attention and cuddles. But it doesn’t seem to work like that. Carys gives and receives hugs and cuddles all day long, she knows how to get me to cuddle her, and the tantrums have lessened, not increased.

I can take her out to the shops, even to the hospital, and she is relaxed and not stressed. In fact, when we are out, she likes to hold my hand and walk about, instead of sit in the safety of her buggy.

In the past, Carys would only tolerate restaurants sitting on mine or Daddy’s knee (preferably Daddy’s), cuddling her soft familiar blanket for comfort, with her headphones on to block out all the noise, and a Peppa Pig DVD to focus on and distract her from all the activity and commotion. Sometimes, we would get disapproving looks; people like to see children interacting with their families around the dinner table, not glued to their phones or tablets. But these were Carys’s survival techniques.

We haven’t taken her out to dinner yet since we started this process… that’s planned for this weekend. So wish us luck!


NB: I don’t know for sure how all this feels to Carys, as she is non-verbal, and can’t tell me. I have based this on how I imagine it must feel having observed her reactions and beghaviours, and after having talked to her occupational therapist. 😊

A Mother’s Thoughts and Fears

It’s 630 in the morning, and outside, the sky is dark, but not so black as my mood. Carys is on her way to the children’s hospital in Dublin, and I’m sitting here, chain-drinking coffee while my heart breaks.

It’s only dental work, but it’s never ‘only’ something for children like Carys. There’s no way she’s going to let a dentist look in her mouth, or go anywhere near her, thank you very much.

A year ago, it took five of us to hold her down while a dentist gave her some temporary fillings. No needles or drills involved. It was a traumatic experience for everyone involved, not least poor Carys herself, who has absolutely no comprehension of why we’re doing that to her, except that it’s bound to be something she’s not going to like. Or hurt her.

So today, she will be having a general anaesthetic, and I’m scared, really scared. GA always carries a risk, but for Carys, with her bloated fragile heart, it’s a very serious risk, and I’m terrified she won’t wake up.

I know she will have an excellent anaesthetist. I know he will have read her file. I suspect her cardiologist will have been consulted. I know she is in good hands.

But she’s out of mine. My hands have always held her, but not today. I am home with my boys, and Carys is with her Daddy, and I am riddled with guilt. I can’t leave the boys here on their own, but I should be with Carys and Conor.

Yesterday, I was in such a state with this hanging over me, that my youngest son asked me why I was so angry and doing so much cleaning. Sounds funny, right? Conor said it would probably be best if he took her to the hospital.

Carys is always calmer with her Daddy. She’s a Daddy’s girl. She sleeps in his arms. I do the feeding and the nappies and the hair-washing and the therapies. I do the activities, the work and the fun stuff. With him, she feels safe and relaxed. I am in a stressed and emotional state. Today, I am not Carys’s best advocate.

I know this, but still I feel guilty. Not only am I not there for Carys, but I am not there for Conor. He will have to make that long walk down the corridor to the operating theatre with Carys in his arms, alone. I have condemned him to hold Carys while they administer the first drug which puts her to sleep.

If you have ever had to hold your child while this is done, you will know it feels like watching them die.

And then, while you are still in this extreme condition of terror and bemusement, they snatch her out of your arms and manhandle you out the room too quickly for your mind to register what just happened.

To wait, while some butcher takes a knife, or in this case a drill, to your precious baby.

Of course, they’re not butchers, they are life-saving angels, and two of my children are alive and well thanks to these very special people. Words can never convey such gratitude. ‘Just doing my job, ma’am.’ They really think it’s just a job.

Last time we went through this, Carys was only four months old, and she had a complex surgery to remove her haemangioma. It took four hours, and I remember sitting on her hospital bed, waiting, holding her blanket to my face and breathing in her baby scent. I remember how helpless and desolate I felt.

Today’s procedure is only a short one in comparison. But I’ll still feel the same. The risks are just as great. Conor is on his own in Dublin, and I am alone here. And we’re waiting. Just waiting. And hoping. And while Conor is being a good parent, I’m feeling like a bad one, because I’m too weak and too selfish to be there in his place.

And I’m so afraid that she won’t wake up. That her weak heart can’t cope. That after everything we have been through together in the last ten years, we could still lose her.

I’ll let you know how it goes.

And please, if you want to leave a comment, say anything at all but not what a good mother I am. I can’t handle that today.

No Nativity and an Update on Brushing

Carys dressed as an angel for her school nativity a couple of years back.
Carys dressed as an angel for her school nativity a couple of years back.

We have no nativity to attend this year. It is the first year in a decade that we have not attended a nativity. Our little Carys is now too grown up to be in a nativity. She will be ten years old in one week. How the time has flown! Double figures, and no nativity.

I loved watching Carys in her school nativity. She was usually dressed as an angel, sitting in her wheelchair, holding a shaker with bells on it. She would shake her bells throughout the play, totally oblivious to everything going on around her, except the songs; she adores music.

Seeing her on a stage, taking part… well, being included might be a more accurate description, lol… always gave me pause for thought; it made me see her differently, not as just my little girl, but a person with her own life, if not independence, making her own friendships and bonds, on her own terms. And it filled me with a flutter of mixed feelings; gladness, sadness, pride and probably others that were so intertwined and mangled, I couldn’t put words to them.

An update on the Willbargar Brushing and Compressions; we’ve been brushing for six weeks now. At the time it was introduced, I felt quite perturbed; why had no one ever suggested this for Carys before? Surely that is what having experts like OT’s in her life is for, to recognise what Carys’s requirements are and match them with treatments?

One week in, and I quickly realised that there was no way I could have committed to it in the past. I don’t know how receptive Carys would have been when she was younger, but believe it or not, it’s not just about her; it’s about the parents and caregivers, too.

Life was bitten into 90 minute segments. Although the actual technique only takes five or ten minutes to complete, there is all the organisation, the dressing and undressing etc that it involves. Which means that realistically you only have about 70/ 75 minutes till the next one.

That’s an hour and fifteen minutes. Just enough time to cook dinner. make a start on the ironing, make a start on the hoovering, make a start on most things and then abandon them halfway through, not enough time to do the food shopping, go out for lunch, or in fact do anything outside of the home.

This process is one that needs consistency and routine. If you don’t commit to it, it wont be effective. I suspect that half of the time it fails, it is because the adults providing this care are unable to commit to it. When you have work and other children, it is hard to stick to.

I admit that in the past, I wasn’t always in a happy headspace over Carys. I believe this would have been barrier enough. I would not have been able to commit to it. I know that. I also firmly believe that things happen in our lives when they need to.

There is no point in being aggrieved over the fact that no one suggested brushing to us five years ago. Carys may not have been ready for it; I was definitely not. I am so grateful that all the right circumstances are in place now; the right OT, my attitude and willingness, and a teacher at school who is equally willing and passionate about helping Carys to achieve her full potential.

Now we are entering Phase Two; the frequency has reduced to five brushings and compressions a day, but now we have something called a Sensory Diet to accompany them. This is nothing to do with food; it is a series of deep pressure sensory activities tailored to Carys’s needs and abilities, such as lateral swinging, deep massage, rocking, back pressing, being rolled tightly in a duvet etc. It takes no more than 15 minutes to carry out, and is fun to do, more like play than therapy, parent-child bonding time. We like doing it, and that makes it so much easier to stick to.

There will be other aspects to it in the near future; vibratory tools and exercises for desensitising Carys’s mouth, and the use of weighted vests and blankets. But for now, I won’t think of them.

If you are about to embark on this program, be warned that it takes a LOT of commitment from everyone involved, and it will change your life. Like me, you will become a slave to that alarm on your phone, how you will grow to hate that ring tone! But the rewards will transform your life!

Already, the results are good; Carys is more relaxed, even in situations outside of the home. She has become more curious, more willing to reach out and touch things. She allows me to wash her hair, without even a murmur… whoever would have believed that could happen? She is reacting with less sensitivity to touch, although she still wriggles and squeals when I brush the soles of her feet, but then, who wouldn’t? She doesn’t pull away when I kiss her face, and that’s nice. She opens her mouth for her toothbrush and allows me to brush, you have no idea the battles that used to cause! Carys has the strength of Hercules when she wants!

We have a long way to go, but we’re getting there.

My Daughter is NOT Disabled!

Disabled.

I hate that word. Not that there’s anything particularly wrong with it as a word in itself. It’s just that, when applied to people, it’s so negative and judgemental. I mean, is it just me? When did it become good and proper and acceptable to define people by what they can’t do, by what they’re not? We don’t apply that concept to any other section of society.

Here is a definition of the word ‘disabled’ according to the Oxford Dictionary;

(Of a person) having a physical or mental condition that limits their movements, senses, or activities.

Really? Is that all they are, persons limited by their conditions?

Ok, we know that children and adults like Carys are different from the majority, and we have to have a way of referring to them. Don’t we? Because we like labels; they make things nice and clear, and everyone knows where they stand.

Well, this may come as a bit of a surprise to some, but my daughter Carys is NOT disabled. I don’t define her by labels, especially not negative ones. She’s not a cripple because she’s in a wheelchair. She’s not a mute because she doesn’t talk. And she’s certainly not ‘slow’, or a retard because of her mental abilities.

The first time I heard the R-word applied to Carys, I was shocked. I had honestly never perceived her in that way since the day she was born. It shocked me even more that said assessment came from the mouth of a friend. The second time I heard it, I was better able to handle it. (In a firm but polite manner.) The R-word has been denounced and rejected by society, and rightly so.

I don’t like the term ‘special needs’ either. Her needs are not special, they are the same as everyone else’s, to love and be loved, to be nurtured, kept safe, have access to food and toys, a roof over her head, education, to be accepted.

I have heard people saying of her to their children, ‘We have to take care of Carys, she’s special.’ Well yes, she is, but no more special than all our children. I know this is meant well, but have you ever had to explain to your five year old why its Ok for a certain person in his class to pull his hair, because teacher said she (the person who did it) is ‘special’? I have. Not only is that wrong on the teacher’s part, but it is not an excuse for bad behaviour.

I define Carys by what she CAN do; in spite of all her challenges, she has overcome great suffering. She has learned to crawl and walk. She loves music and singing and dancing, and can actively partake. She has the most brilliant smile. She is cheeky and feisty, demanding at times. She laughs… a LOT. And oh, she has an infinite capacity to love.

She doesn’t judge people by the colour of their skin, how they look, what car they drive, or how big their house is. She doesn’t care about any of that. She willingly shares her food and toys. All she asks is a bit of attention, a full tummy, somewhere comfy to sleep, and as many hugs as you can spare.

What she has, is a rare syndrome. It’s called Cardiofaciocutaneous Syndrome. That is label enough. It’s completely true. It’s not insulting. It is a fact. It doesn’t make her special, just different. She’s not a victim of this syndrome, or a sufferer of it, or a patient. She is not impaired. She is not handicapped. It is simply something which is a part of her.

Here is a great quote;

The most appropriate label to use is usually the one given by  the parents.

In our case, that would be Carys. Carys is a Welsh name which comes from the word ‘love’ (cara’). I believe it is also very similar to a Greek word meaning ‘happy’ or ‘joy’ (περιχαρής / pericharí̱s). You can’t get more appropriate than that!

Carys, like all people with syndromes, is a human being, just like you and me. I think there are many so-called ‘normal’ people out there in the community who are far more disabled and non-functioning than Carys will ever be.

Brushing’s not just for Teeth and Hair!

Carys on holiday 2013
Carys on holiday 2013

I bawled in public again on Friday. I don’t know why I can’t seem to keep my emotions in check these days. I had gone to Carys’s school to meet her new Occupational Therapist. Halfway through the session, and the tears started to fall.

“Why are you crying?” she asked, handing me a wad of tissues. I couldn’t really explain. It was a whole crazy confused bunch of things I had absolutely no ability to extract and define at that point. Having had time to think about it, it has become a little clearer.

As a result of that meeting, today we started the Wilbargar Therapressure and Compressions Protocol. It’s a pretty intensive treatment for Carys’s multiple sensory defensiveness. It involves performing a particular treatment every ninety minutes between waking and sleeping for the next three weeks, after which she will be re-assessed. If the treatment has been successful, we will hopefully then be able to reduce the frequency.

So what does it involve? Well, we have a special brush with which we have to brush Carys’s arms back, legs, hands and feet. It requires deep pressure. This is followed by compressions of the joints. All told, it only takes about five or ten minutes.

But how does this help? It’s kinda complicated. From my understanding, there are two basic pathways feeding information to the brain. One is just for general info, the other is for ‘flight or fight’. In children with sensory defensiveness, all the info they receive, even that which is harmless and benign, gets fed into the wrong pathway, the ‘flight or fight’ one. It’s sensory overload.

This is what got to me. Imagine walking all alone down a strange dark alley in the middle of the night. Every sound, every shadow feels like a threat. There’s no one to help you. It’s unfamiliar and terrifying. Your body is on high alert, anticipating that something bad will happen.

We’ve all been in a situation like that at some point in our lives. Can you remember how it felt? Imagine if that happened to you every day. If you lived your life in a constant state of high alert and fear.

You’d be exhausted. You’d be nervous. You might react inappropriately. You might lash out aggressively at a perceived threat. You might not be able to eat or sleep. You’d be distracted, anxious, emotional. And you’d be misunderstood.

Well, this is how it often feels to suffer from sensory defensiveness. We know this because, although Carys can’t talk, other children can, and have. And that is one of the reasons why I cried. Carys will be ten years old in a few weeks, and all this time I never realised how she was feeling.

It’s no wonder she never wanted to leave the safety and familiarity of her room; why she played up so badly last year on holiday; why we have had so many issues trying to take her out to restaurants and on family days out. And the more we tried to familiarise her with these places, the worse it got, not better.

As I sat there, listening to all this with tears and snot streaming down my face… yes, sadly, I’m not a pretty, film star style crybaby… I realised that what this woman was proposing could work for Carys.

When she was a baby, I had taken her to a baby-massage class which had significantly improved her defensiveness against touch, particularly around her chest, shoulders, neck and head. She still enjoys massage now. She enjoys Reiki, and she loves nothing more than a full on cuddle!

And then I felt hopeful, that no matter how intense, time consuming and temporarily debilitating it might be for me personally, here was something which might actually make a significant improvement to Carys’s life. My hopes and dreams for Carys had been renewed. And that was another reason why I cried.

How lucky we are!

I left feeling humbled and grateful for the events and people who had brought this young woman into our lives; grateful for her knowledge, and grateful for the research which had created this procedure in the first place. I’m also grateful for Carys’s teacher, who is willingly sharing in the burden of all of Carys’s care, from her education and development, to physio, and now this. And that was also why I cried.

You can read about the Wilbargar Therapressure Protocol here. You can read about sensory defensiveness here (Carys has most of them). Finally, you can read a really touching blog post by author and blogger Rachel Carrerra who describes what it feels like very movingly.