Birthdays Galore!

Pleins d’Anniversaires!

The last few weeks have been birthday-celebrations filled in the Cathal & Co household. Late January it was the Mammy’s. On the 25^th February it was Oisín’s first birthday…. I am just wondering where that year has gone! And then exactly 2 weeks later (thanks to the extra day in February). Cathal blew out 4 candles.  Yes! 4!

Ces dernières semaines ont été pleines de célébrations d’anniversaires chez la famille Cathal & Compagnie. Vers la fin janvier c’était celui de la Maman. Le 25 février c’était le premier anniversaire d’Oisín… je me demande où est passée cette année ! Et puis exactement 2 semaines plus tard (grâce au jour supplémentaire en février), Cathal a soufflé 4 bougies. Oui ! 4 !

Here is a little taste of my Little Princes’ celebrations.

Voici un petit goût des célébrations de mes Petits Princes.

Oisín’s was very puzzled as to why he couldn’t touch the flame….

Oisín avait du mal à comprendre pourquoi il ne pouvait pas toucher la flamme…

Yum yum yum….

Miam miam miam…

How old are you Cathal? Four! Who is a big boy? Me!

Quel âge as-tu Cathal ? Quatre ans ! Qui est un grand garçon ? Moi !

The loveliest kiss EVER!

Le meilleur baiser JAMAIS donné !

The brothers relaxing after a hard afternoon of birthday partying

Les frères se relaxant après une long après-midi de fête d’anniversaire.

Sharks, Turtles and… Spiders!

Last Sunday afternoon Cathal and I went to Sealife, an aquarium South of Dublin.

The Sharks were a major hit, we spent a long time watching them and commenting on them.




The turtles were also a favourite, we had to stop and admire them twice. But the second time was the best, as Cathal proved it is possible to play Hide and Seek with sea creatures.



And to finish it all, yesterday evening I got a recital of Incy Bitsy Spider. Lovely!





PS – Cathal’s speech is coming along so much at the moment. He is acquiring many words and expressions so quickly that I do not always understand what he is saying. I am the one who needs to catch up! ;-)

In their own time… whenever that may be

Cathal has never been a crawler, rather a bum-shuffler. He has developed his own very accurate and very fast style in this form of locomotion. Walking has not been that easy for him. Low muscle tones and weak ligaments in his ankles and knees have meant that standing and then walking were difficult for him. In the beginning his little legs simply could not position themselves well enough to carry his weight, and then they could not carry his weight with enough stability to enable him to walk on his own. Confidence to try and launch yourself unaided comes only if stability is there to some degree. Until now it has not been there for Cathal.

But it has not been for lack of trying. Remember this video taken around Christmas last, when Cathal was about 2 and a half months short of his third birthday? It was then such fun trying out this Walking Business.




A couple of weeks ago, after months of practising, and at the great age of 3 years and 6 & half months, encouraged by the Dad, Cathal very bravely took his first steps unaided. And it was all captured by the Mammy:

I am very VERY proud of him. It has been a long and difficult road for him to get there. Since then, as a matter of routine, he still much prefers to bum-shuffle his way around than to walk. But every so often, if in the right frame of mind, and coaxed properly, he may take off for a few steps. All in all, a major milestone for Cathal.


On the other side, Oisín seems to be a great student of his big brother. He may be only barely 7 months old, but sometimes he looks at Cathal with such intensity, you would think he is willing himself to follow him... and he is not that far. Because he is very clearly attempting to emulate the Big Bro in the house. For example, look at this, filmed only a few days ago by the Mammy, when the lure of Cathal’s garage was simply too much to resist, and when sitting still against the green pillow was not an option…




We have been wondering for a while now which of the two will be the first to walk and run around freely. And right now I still would not hazard a guess. But one thing is for sure, they are encouraging each other, and pulling each other along. God help their parents by the time both of them walk and run around!
;-)



One last little thing I wish to share here, two photos I took on Friday evening, after putting Cathal to bed (he fell asleep in my arms as I went through “our” ritual, singing him a French lullaby).

One very tired little boy, one very tired cat...

(hmmmm, no place like Mammy and Daddy's bed!)

... and one very tired big brother.

All so sweet!

Sleepover Snapshots

Snapshot no. 1 – Saturday morning
Cathal is brought over to me by the Mammy. He throws himself into my arms and holds on tight, so tight, for so long.
When the Mammy leaves, he waves at her with a big smile and shouts “Byyyyye”


Snapshot no. 2 – later Saturday morning
Me: “We are going shopping now Cathal. What we will get?”
Cathal: “Milk... Shoes... Apple... Banana”
Total score: 3 out of 4 – His accuracy is very impressive!
Apparently he suggested the first three items to the Mammy the previous day. I got the lone banana as a bonus!


Snapshot no. 3 – Saturday afternoon
Walking to the local playground during the afternoon, Cathal in the buggy, me pushing. Cathal is providing me with a non-stop running commentary on everything he sees:
- Car!... Bike!... Car!
- What colour is that car?
- Red!... Blue!... Red!... Boy!... Man!... Bike!
And all this in between various snippets of “Cathal Babble” which I cannot decipher.
When we turn off along the green that leads us to the playground, the lack of traffic brings a pause… quickly broken by signing. Old McDonald apparently has a tiger, a lion and a snake on his farm, as well as the more traditional cows, pigs, dogs, cats, ducks, horses, etc.

The return walk home is as talkative and musical.


Snapshot no. 4 – Sunday morning
5.40 am
- NaaaaNaaaa

5.45 am (standing against my bed)
- Nana wake.
- No.
- Nana! Wake!
- No.
- NANA! WAKE!
- Nooooo...
But I did! No choice...


Snapshot no. 5 – 30 minutes later – on my bed
Cathal decides to get another book for me to read to him in bed. Positioning himself at the edge of the bed, he is talking to himself in almost a whisper:
“Careful... Careful... Ready, steady, go.”
And he slides down off the bed, ever so slowly, ever so cautiously, obtaining a perfect slow-motion landing.


Snapshot no. 6 – Sunday 8.10 am
Cathal insists that I sit next to him on the couch to watch Cbeebies. As I over bring my bowl of cereal, he asks for the rest of his own cereals he did not want to finish earlier on.
So we sit, side by side, watching TV, eating. Every so often he looks at me and smiles. No words needed.

Snapshot no. 7 – Sunday 8.35 am
I feel sorry for my neighbours: Cathal is in the bath, and exercising his vocal cords to the max, testing the match between the acoustics of the bathroom and his musical talents. And when I tell him he is very noisy he burst laughing.


Snapshot no. 8 – Sunday 9.45 am
We are on the motorway, driving to Imaginosity. The radio is on. Cathal has resumed his singing, adding some very cool dance moves I catch in the rear-view mirror. As quickly as he started singing he falls asleep: no wonder! But I don’t have this luxury, I am driving, aren’t I?


Snapshot no. 9 – Sunday late morning – Imaginosity
Cathal is totally taken by the foam bricks: first we rebuild the wall we have knocked down. As the top rows are out of his reach, he uses the remainder of the bricks to build a series of little walls around the room, each with a different pattern, yet each almost perfectly aligned. Of course, the running commentary has resumed.


Snapshot no. 10 – Sunday lunch time
As we are nearing his house, he suddenly shouts: “Daddy Mammy! Yay!”
Quickly followed by “Oisín! Yay!”


I am aware that people with Down Syndrome are said to be very affectionate and always happy. I pay no heed to such generalisations. Every single person has his or her own individual personality. If this includes a penchant for affection and positivity, as with any one else all the better, as it makes everyone’s life more pleasant.

But I must say that having Cathal for a sleepover is always a pleasure, not just because of the fun we have, but mainly because of his own, and very personal, cheerfulness, his almost constant joy, his easy excitement at everything that is proposed to him. As with many 3 year olds trying to affirm their own individuality, his favourite word is “NO!” - always delivered in a forceful manner. Yet his face usually lights up again within seconds of expressing this negativity.

If we all took a leaf out of Cathal’s Happy Book, we would have a much more pleasant day. Every day.

Phone Conversation

Since Cathal has been about 4 months old, I have often spoken to him on the phone. It’s a nice way to keep in contact between the times I can see him, and can hold him, hug him, kiss him, and play with him.

In the very beginnings, Cathal heard my voice but had no idea where it was coming from and generally ignored it. Then came several stages when:
- he licked the phone - must have tasted nice!
- played with it - pressing the difference buttons is such fun
- eventually listened attentively, without a sound
- listened and answered with little baby gurgling sounds
- gave the phone a broad smile - though I could not see him, but his intentions where in the right place.

Until Cathal started giggling after every sentence I said, every question I asked. Obviously, this was highly entertaining.

And this giggling communication went on for quite some time. About a year and a half in fact.

Until last Friday lunch time.

I needed to make a quick call to the Mammy. And during our conversation I could hear Cathal in the background so I suggested that she gives him the phone once we had finished our own conversation. It went like something like this:

- Hello Cathal!
- . . . NANA!
- How are you Cathal?
- Nana!
- Are you well?
- Yeshhh!
- Are you good?
- Yeshhh!
- Did you have your lunch?
- Yeshhh!
- What did you have?
- . . . .
- Was it a nice lunch?
- Yeshhh!
- Did you go to school this morning?
- NO!
- Did you go swimming?
- Yeshhh!
- Was it nice?
- Yeshhh!
- Cathal, I must go now. Will you give me a kiss?
- *sound of kissing coming down the line*
- And here is a kiss for you Cathal.
*sound of kissing on my side, echoed by Cathal*
- Bye Bye Cathal
- BYE NANA!

And the Mammy came back on the phone.

Nearly three years on, and I had just had my first two-way phone conversation with Cathal.

Score!


Signed: A Nana who got very emotional after this phone call.

Where is...?

“Where is?” is a great game, with so many levels of complexity.

As for any child, Cathal started playing it when he was very small. In the first version, we would ask him: “Where – is – yourrrr... NOSE?” and then point at it. And then we would repeat the question about an increasing number of body parts. After a while he did all the pointing himself.

As Cathal got a little older, we moved on to the next level and started asking about objects around us, and people. And then he took the game into his own hands, adding a sprinkle of imagination to spice it up. His favourite version works like this:

- Take a small object (one of his socks freshly pulled from his foot is a favourite) and put it behind your back, look around with a bewildered expression and shout “Oh! Oh! Where!”
- The adult / older child present pretends to look around, querying if the sock is here or there, underneath this or inside that.
- Then pull the object from behind your back, shout as loud as you can “THERE!” and burst laughing.

NB: for added fun, before taking the object from behind your back, do a “roly-poly” motion with your hands pretending this is a magic trick. Adults find this irresistible.



Such fun!

No matter how old we are, we all love games. They entertain us, they make us feel good, they absorb our attention. And we often forget that they are the best medium of education and learning ever devised. “Where is?” is not only fun, it helps with visualising the concept of what is missing.



Last week I was looking after Cathal in his own home for a few hours. During the afternoon Cathal asked me “Mammy! Where?” I explained she was gone to a wedding. He repeated “Eddin” and seemed satisfied with this.

After a while he asked “Daddy! Where?” So I explained he was gone with Mammy to a wedding. Again he repeated the word “Eddin” and continued his activities.

During the course of the afternoon he talked a few times about Mammy and then Daddy, always happy with the explanations.

But when we were having dinner (pasta, his favourite!) disaster struck. He suddenly became very quiet. I asked him if he was alright. He looked around, then at me, and with a panic look on his face said: “Oishhhin! Where?” I told him that Oisín was with Mammy and Daddy at the wedding.

“Noooo! Oishhhin!” followed by uncontrollable heavy sobbing. Forget about pasta dinners, this was serious. Cathal had just realised that his little brother was not there. And that he was missing him.

And I suddenly understood that, though Cathal is well used to doing things without his brother (he goes to Montessori every morning), though he is well used to being on his own with me (he is no stranger to sleepovers in my house), this was the first time that, since the birth of his little brother three and a half months ago, he was in his own home without his parents AND Oisín. I witnessed the strength of love he has for his brother, the importance his sibling has taken in his life.


I hope that in the future, when Cathal asks the question “Oisín! Where?” he is always able to then shout with delight “There!”And that when in his own time Oisín asks the same question, he too can count on his big brother to be there for him.

As easy as putting one foot in front of the other

It seems simple doesn’t it? At age 16, I found myself standing holding the hands of the physiotherapist who was in front of me, and wondering “how in the name of God did I do this before?” Following an accident, several months of immobilisation, and eventually extensive knee surgery, I simply did not know how to walk. My brain could not tell my wasted muscles to move. I had managed to stand up with a lot of pulling and prompting, I had enough balance to remain standing on my own, but the mechanics of “lift foot - move forward – put down foot” had become alien to me. It took several sessions to reconnect the brain-nerves-muscle communication flow and eventually walk again. And several months before I could run again – which I eventually did with the help of my father who held my hand and pulled me along a beach every day of a month summer vacation… Oh the teenage embarrassment of this!

I was reminded of this recently watching a video of Mark Pollock on the internet, and then again during his recent interview on the Late Late Show, where in the Project Walk Gym he is on a treadmill, held up right but a strange contraption, and two people, one on each side, are lifting his feet and mimicking the walking movement. Of course, in Mark’s case, paralysis is the issue, and his condition is severe. But this goes to show that for some people putting one foot in front of the other is not as easy as it seems.

A couple of weeks ago, I witnessed for the first time Cathal’s attempt at a “one-hand-holding-only” walk. His knees and ankles joints have weak ligaments, and at 3 years of age walking is still a major challenge for him. Standing up if fine, walking holding with 2 hands for a short distance is just alright, but any thing else is a major effort of balance, and requires great focus. And courage: I would not like to find myself attempting a room-crossing feeling all wobbly. It must be similar to trying to walk on a tight rope, even if only a few inches from the floor. So when I saw him holding on to his dad’s hand, and slowly, gingerly, purposefully, crossing the sitting room, going down the hall, negotiating the length of the front garden, crossing the road and finally reaching the car, I felt quite emotional.

Because in those few minutes I was reminded of Cathal’s difference: Nothing is simple for him, nothing is easy, nothing can be taken for granted. But I was also struck by his determination and that of his parents. It may take time, but with therapy, love and hard work, Cathal will walk, and run, on his own, like any other child. He just needs a little more time.

Ironically I took up walking after Cathal’s birth, and because of him will do my third Mini Marathon on June 6th. Unlike Cathal, my training this year has gone haywire through a series of uncontrollable circumstances. But, like Cathal, I am determined to do it and pass the finish line. I will not beat my own personal World Record this year, but I will get that medal. And the Down Syndrome Centre will get a few Euros as a result. All I need to do on the day is put one foot in front of the other.




NB: If you would like to sponsor me as I attempt to jog-walk-crawl the Women’s Mini Marathon on the 6th June, and give some much needed fund to the the wonderful organisation that is the Down Syndrome Centre, you can do so here.

Thank you.

So Little and So Huge

Up to three years ago, I was living in a very cosy little life. Of course I knew that my environment was going to change because grand-motherhood was approaching, but how different could that be from the “same-old same-old” habitat I had known for so long. I had lived through many experiences, acquired a wide ranging knowledge, seen and heard a lot, taking on board some ideas and putting others aside. In my mind, I thought I was “wise” and all I now needed to do was enjoy this wisdom.


And then, on the 10th March 2008, Cathal joined our family. On that day, our lives took a little boat trip, but we did not reach the shores we had anticipated. Instead, we stumbled onto a new world, stepping on shaky ground, in total shock, in tears, in pain, in anguish. To say that Cathal’s diagnosis of Down Syndrome and of Congenital Heart Defects took us totally by surprise would be an understatement.


Personally I knew next to nothing about Down Syndrome. My initial reaction was more of concern regarding the immediacy of Cathal’s heart condition. And the following 16 months had many traumatic moments that I will never forget. But the under-lying presence of Down Syndrome gave me the springboard for a shift in my life priorities.


Yes, Cathal has Down Syndrome. So? He may take more time than other children his age to understand some things. His little body may not be ready at the same time as other children’s to acquire some skills. But he will understand them, he will acquire them, in his own time, at his own pace.

Cathal is teaching me patience, because I cannot rush him.


Yes, Cathal has Down Syndrome. So? He has it in him to do whatever he is capable of doing. I is simply a question of giving him extra opportunities to discover his abilities than with other children: creating an environment, promoting a potential to allow him to grow as far as he can.

Cathal is teaching me faith, faith in him as an individual, faith in his own, personal, abilities.


Yes, Cathal has Down Syndrome. So? He may need to work a little harder than most to achieve, but when he does achieve, no matter how small this achievement may be, the joy we feel is all the greater.

Cathal is teaching me appreciation, of simple joy in the smallest things.


Yes, Cathal has Down Syndrome. So? He has his own strong personality, full of goodness, full of love, full of tenderness and gentleness, full of strong opinions, full of courage, perseverance and determination.

Cathal has taught me that he IS not Down Syndrome, he IS himself, and just happens to have Down Syndrome, just as I have green-brown eyes. He is him, as much as I am me.


Before Cathal joined our family, I thought that I did respect all people. I have since realised this was very much a generalisation, on the surface. The way his parents faced the events following his birth, the courage and determination they showed so quickly to do everything in their power to fight for him, courage and determination that is now manifest daily in all the small but necessary gestures they do for him, make me feel very proud of my daughter and the Dad.

And because of Cathal, I have in the last three years come to know so many people from the wonderful world of Special Needs and Disability, some of whom I now call my friends. Every one of them is Special in his or her own way, but most of all they are special to me because I can in confidence accept them and respect them simply for who they are.

Cathal has taught me the true sense of Respect for others.


3 - 21: On this World Down Syndrome Day, I am celebrating the huge and fundamental changes an extra little chromosome made to my life. I am celebrating my love for a most wonderful human being. Cathal, I would not change you in anyway, you are the most perfect grandson I could have ever wished for. Thank you for being you.

5 Words Make Such a Difference

Our lives descended into emotional turmoil following Cathal’s birth. This new member of our family burst onto the scene with five little words:

Down

Syndrome

Congenital

Heart

Defects

And nothing was the same again.

Huge sadness. Gripping fear. Unbearable pain. Sense of Loss. Un-comprehension. Overwhelming powerlessness. Most of all, for the days and weeks that followed his arrival, the constant worry, relentlessly occupying the mind, physically gripping the body during the day, invading dreams during troubled sleep.

I first saw Cathal in the Intensive Care Unit of the maternity hospital. He was only a few hours old, waiting for his transfer to the Neonate Cardiac Unit of Our Lady’s Children’s Hospital. I was standing by the incubator with the Mammy, and we both agreed he looked perfect. Simply perfect. Yet by then we knew our lives had taken a turn onto a road so less than perfect! And the following 18 months indeed turned out to be so tough!

A few hours after meeting my first grandchild, once back home and talking to my sister on the phone very late that night, I remember saying to her: “He is going to need a lot of love, so much love.... All I can do is love him so much... I can’t do anything else....”


Down
Syndrome
Congenital
Heart
Defects

These words were absent from our vocabulary last Friday morning when Oisín joined our family. When I asked the Mammy “What is he like?” she said “He is perfect!” With a laugh I reminded her that Cathal was perfect too when he was born. “Of course he was. But Oisín IS PERFECT!” Joke aside, I knew what she meant.

Strangely, I did not have any sense of relief at the confirmation that Oisín was as we had been told to expect. Somehow, I was not worried, and even though all the signs pointed to a “no diagnostic needed here”, the shock of Cathal’s own diagnostic had prepared me for accepting anything that may come our way. All I felt was joy. Joy of the anticipation of loving and spoiling another little being, joy for the joy my own daughter was experiencing.

Oisín and his Mammy went home the next day. I had been looking after Cathal and we waited another 24 hours to allow parents and new baby some time on their own before introducing Big Brother to Little Brother. This introduction went very well, and all signs are that Cathal is very accepting, and mindful, of Oisín. I am so proud of him!

But two things struck me on that day: The first was the atmosphere of serenity and joyous contentment in the house. Relaxed faces. Happy voices. Ease of interaction, where no one was afraid of saying the wrong thing, or letting their own angst spill out. Also the ease of looking after a newborn who is in good health, who can feed so easily, who does not have weak muscle tone hampering his sucking, who is not exhausted after a few seconds because his little heart cannot keep up the pace. It all felt ordinary, even (dare I say it?) “normal”.

And then, I noticed how grown up Cathal suddenly seemed. Even though he was the same child as the little boy who had been playing in my house earlier that day, or cuddling up to me in bed that morning, he was no longer the baby. Rather he simply looked older, responsible. He radiated with knowledge, ideas and imagination.

Oisín has no idea yet of how lucky he is to have a big bother like Cathal. Deep inside me is the certainty that I will truly enjoy watching the two of them growing up together.

Do not tell the Mammy and the Dad this, but I secretly hope that the two of them will quickly gang up together and drive their parents demented... You know: “grandchildren are parents’ revenge over their own children”.... ;-)

Oh! The fun they will have!

A second Little Prince!

Un deuxième Petit Prince!

Meet Oisín, Cathal’s little brother, born this morning. Isn’t he beautiful?

Voici Oisín, le petit frère de Cathal, né ce matin. N’est-il pas beau?

Because of restrictions on visits in maternity hospitals at the moment (related to Swine Flu) neither Cathal nor myself have seen him yet “Face to Cuddles”, but Cathal is not too impressed by the photos.... Though to be fair he asked to look at the “baby” again this evening.... Small steps....

A cause des restrictions des visites en maternité en ce moment (à cause de la grippe A) ni Cathal ni moi n’avons encore pu le voir « pour de vrai avec câlins », mais Cathal n’est pas trop sur de ce qu’il en pense en voyant les photos.... Mais pour être juste, il a demandé à regarder de nouveau le « bébé » ce soir.... A petits pas....

One Two Three… Five!

Our Little Genius!

The Wheel of Life

It ended almost the same way it started, very cold, and very white. Almost right up to the last few days of December, snow paralysed our little isle, just as it did at the start of the previous January. Never had we seen the likes of it before. Down to minus 17.5 Celsius! Unheard of in our usually very tempered Atlantic climate.

Also unheard of were the events that brought us where the country now is: in such an economic and financial Arctic winter that my great-great-grand-children might have to pay the final cost it!

I got very angry during the year. The revelations kept coming, some criminal in my view, but who am I to judge, when I am only a taxpayer? An invisible fog kept lifting on the increasing ineptitude of a government which was found to have as much back-bone as an over-cooked spaghetti. Being the person I am, I tried to rationalise the situation, to understand how it all came to pass: I read the articles, I listened to the experts, I watched the documentaries, I followed the debates. And then I sat back and to paraphrase the great Miley Byrne, all I could say was: “Well Holy God!”

I don’t know what 2011 will bring us. But there is one thing I am certain of: I am not going to be bored. The mess has been made, we just have to accept it, and then find new ways not only to clean it up, but to improve, to progress. It is always in times of crises that ideas germinate best. History has taught us this, it’s in our nature, as human beings, to go around in cycles. The Wheel of Life is such a good analogy: it turns and turns, everything is repeated, going up, and down, and up... and yet humanity moves forward, with each turn. On a personnel point, if what is afoot comes to fruition in the next few weeks, I will really look forward to the challenge of doing my little part in the mess-clearing and improvement-setting. Fingers crossed...

And yes, the wheel is turning, on every level. Our own family is moving at its own pace. My own boy has “grown up” a little more in 2010 – though he will probably hate me for saying this. But he has chosen well, she is so nice! My own girl is “growing”, literally, and I can’t wait for this second grandchild to arrive in about 7 weeks’ time. Cathal is an absolute charmer: I was on the phone to him only yesterday, and, as always, he did not say much, but kept chuckling every time I spoke, and then sending me kisses... Major melt on this side, as always.

All in all, 2010 finished on a few good notes, all brought about by very simple pleasures.

Pleasures like Santa Claus bringing Cathal the third character in a series that is now complete for him. He was so thrilled.

Pleasures like ripping open lots of presents on Christmas morning:

NB: Cathal’s Mammy – who has never been much of a morning person – was the one most anxious to get up to see what had been delivered, and had the whole household downstairs around the tree by 7.30 am!

Pleasures like having Daddy pulling you up the hill in an ingeniously-thought-of-by-Mammy sleigh to make sure we could all have a scrumptious family Christmas dinner:

I'm ready, let's go!

Here we come...

Ho ho ho!

Pleasures like teaching Daddy how to use your very first laptop:

NB: You may need to turn the sound up on your pc

And finally the very simple pleasure of walking-walking-walking, especially when Mammy is there for stability and Nana is there to record it all:

Wishing you all the best you can have in 2011.

Playschool?

My oh My! It has been a while since I blogged. Two months in fact! I have never before been so silent, and this is not like me… In truth it has been a mixture of over-busyness (most of the time) and lapses into deep laziness (temporary but so rejuvenating). It is not that there is nothing to report. It is more that too many fingers into too many pies don’t do much for Reflection.

The main event, the one that I have wanted to post about for a while but did not get around to, started a few weeks ago. In itself, it is one of those “little things” we take for granted. One of these steps that occurs as part of life with a young child, that parents (and grand-parents) celebrate but don’t make that much of a big fuss about, because it is expected, it is the norm. In Cathal’s case, of course, it is much more.


When Cathal’s Mammy was very small, she liked playing on her own in the house, but came to a stage when it became obvious she needed more. Also her little brother was on the way, and I needed more time for me. So at age 2 ½ she went to playschool. She was the youngest there, and started as a shy but observant little girl, not saying nor doing much for the first few weeks, just watching thoughtfully. Until one morning the teacher asked, in Irish, what colour was the object she was holding… perfect silence around the circle of children. And then Cathal’s Mammy timidly puts up her hand. You see, from birth her dad spoke Irish to her, and her mum spoke French to her, and she heard English all around… so colours in Irish were no problem to her, even at 2 ½! From that day on, there was no stopping her.

When her brother reached the grand old age of 2 years minus 1 week, something had to be done: he could not understand why his big sister was going to school and he was not. He would go around the house feeling sorry for himself, sighing, and generally looking so bored it broke my heart: I could recognise myself in him, having grown up as an only child until I was twelve, and having hated so much the loneliness and boredom due to lack of siblings around me. So the week of his 2nd birthday, he was farmed out to playschool a couple of mornings a week, and he loved it!

My children may have gone to playschool a little earlier than most, at least by Irish standards at the time, but it was inevitable that they would go, it was expected, it was part of the curriculum every child goes through.

Cathal took his turn to starting playschool a few weeks ago. In itself, nothing major about it. Except that it is a Montessori school. Not special needs. Not Early Intervention. Not Skip. Just good old-fashion, run-of-the-mill, ordinary Montessori school. And THAT is major for Cathal.

Finding such a school was not that easy. The fact that Cathal does not walk, and that he is still in nappies, meant a few “no’s” were expressed in what would have been his parents’ first choices. And then this one came on the radar. It is also a crèche, and the Montessori sessions (e.g. the school part of it) are also available to all the children in the crèche from 12 months of age. So bum-shuffling nappy-wearing little ones are not an issue there. Cathal was more than welcome.

The first time, he was there for just one hour. His Mammy reported that he was happy to see her, but not over enthusiastic at going home. The second time, he was there for two hours, and almost ignored her when she came back. Since then he does not want to come home, and is now staying a full three hours once a week. After Christmas, he will go twice a week, giving his Mammy a well-deserved break and quality me-time (especially before the new baby arrives!) Most importantly, Cathal gets right in the middle of things, follows the other children, gets involved in all the activities, has his 11 o’clock break like anyone else. The other children do not know any different. He does not know any different.

In short, total integration. More than anything else he has experienced in his life so far, that is the first true step towards independence. No matter what kind of education system he follows later on, mainstream or special, this little school is contributing to giving him his own space in society.

I am very proud of him for willingly accepting this new challenge, and very proud of his parents for ensuring he is given this chance. I am also very thankful to the playschool for saying “yes, no problem”. And I am wishing all educational places that come along his path in the future will have the same attitude towards him.

It’s the little things

Ce sont les petites choses


It is so easy to go along life taking things for granted, and then despairing that progress is not taking the more conventional route. Cathal is constantly reminding me that Little Things matter much more than I would have given them credit for.

Il est si facile de voyager dans notre vie en prenant les choses comme des événements naturels, et en se désespérant quand les progrès attendus ne suivent pas la route espérée. Cathal me rappelle constamment que les Petites Choses ont beaucoup plus d’importance que je ne suis prête à leur donner.



Little things like standing:
Most children start standing around 8 to 10 months, to start walking around 12 to 16 months. When a 10 months old child pulls himself standing for the first time, we naturally marvel at this new acquisition, yet we expect it. It’s the way it should be.

Des petites choses comme se tenir debout :
La plupart des enfants commencent à se tenir debout vers 8 à 10 mois, et commencent à marcher vers 12 à 16 mois. Quand un enfant de 10 mois se met debout de lui-même pour la première fois, naturellement nous émerveillons de ce nouvel acquis, mais en fait nous nous y attendons. C’est dans la nature des choses.


Cathal is 2 ½ years old and he does not walk. In fact he does not pull him to stand up on his own… Or does he? A couple of weeks ago, he was in my home and I was preparing a bath for him (he had asked me for it). There I was, getting it ready. There he was, sitting on the bathroom floor, flinging toys over the side into the tub. I turn around to take his sponge and bath gel, turn back – Cathal is standing up all by himself, holding on to the side of the tub, looking in with delight at the floating toys. Progress – Little Thing – Big Joy.

Cathal a 2 ans et demi et ne marche pas. En fait, il ne se met pas debout tout seul… Mais cela est-il bien vrai ? Il y a deux semaines, il était chez moi et je lui préparais un bain (il me l’avait demandé). Donc je préparais le bain. Il était assis par terre dans la salle de bain, lançant les jouets par dessus le rebord et dans la baignoire. Je ne tourne pour prendre son éponge et le produit de bain, me retourne – Cathal est debout comme un grand, se tenant au rebord de la baignoire, regardant avec plaisir ses jouets qui flottent. Progrès – Petite Chose – Grande Joie.



Little things like eating sweet food:
We expect all children to like sweet food, to be inquisitive enough to want to try everything, and develop a taste for what we perceive as “nice”. And Chocolate being a favourite for most people, we expect all children to like it. And most do.

Des petites choses comme manger des aliments sucrés :
Nous pensons que tous les enfants aiment les aliments sucrés, sont assez curieux pour vouloir tout essayer, and développent un goût pour ce que nous pensons être « bon ». Et comme le chocolat est un aliment aimé par la majorité des gens, nous pensons que tous les enfants l’aiment. C’est le cas pour la plupart.


Cathal is very particular about food. He used to eat very varied types at one stage, but at one point decided to eat only his favourites and nothing else. And his answer to the suggestion to anything outside of the list is “NO”, or more often a very teenage-sounding “Noooooo”!… Or is it? Lately he has been very interested in some biscuits that he takes out of the packet himself, when he thinks that we did not know what he was doing. But always staying well away from the chocolate ones. This until a few days ago, where one was devoured with great satisfaction, and then the proof was shown to us with mischief. Another Progress – Another Little Thing – Another Big Joy.

Cathal est très difficile en ce qui concerne la nourriture. Il fut un temps où il avait l’habitude de manger toutes sortes de choses, mais il a finit par décider qu’il ne voulait manger que ses aliments préférés et rien d’autre. Et sa réponse quand on lui suggère quelque chose qui n’est pas sur la liste est « NON », ou plus souvent un « Noooooon » aux accents d’adolescence !... Mais cela est-il bien vrai ? Ces derniers temps il est très intéressé par certains biscuits qu’il sort lui-même du paquet, quand il pense que nous ne savons pas ce qu’il fait. Mais il évite toujours ceux au chocolat. Ceci jusqu’à il y quelques jours, quand un fut dévoré avec beaucoup de satisfaction, puis la preuve nous fut montré avec beaucoup de malice. Un autre Progrès – Une autre Petite Chose - Une haute Grande Joie.

But the best little thing lately has been that Cathal, unlike most 2 ½ year olds, recognises letters, knows their sounds, and associates them with other concept. This clip gives a flavour – though of course as any true star he was more interested in watching himself on the camera screen that being recorded! This is more than just Progress, this Big Thing – Big Joy.

Mais récemment la meilleure petite chose est que Cathal, comme peu d’enfants de 2 ans et demi, reconnaît les lettres de l’alphabet, connais leur son, et les associe à d’autres idées. Ce clip vidéo donne une idée – bien que, évidemment comme toute star, il était plus intéressé à se regarder sur l’écran de l’appareil plutôt que d’être filmé ! Ceci est plus que du Progrès, c’est une Grande Chose – une Grand Joie.
(Petite explication qui ceux qui ne connaissent pas l’anglais : dans cette langue, le son de la lettre « i » est aussi le son du mot pour « œil »)

Little things make all the difference, show us that progress is happening, even though we might not believe so. Instead of thinking of what is not happening, we should always focus on what is.

Les petites choses font toute la différence, nous montrent qu’il y a progrès, même quand nous n’y croyons pas. Au lieu de penser à ce qui ne se passe pas, nous devrions toujours nous concentrer sur ce qui se passe.

Never Too Young to Start Reading James Joyce

Books have always been part of my life. I do not know when I was given my first book, but I know they are always there. My earliest memory is of a brightly illustrated version of Goldilocks and the Three Bears. There was also at some point an Atlas of the World with illustrations of animals. I remember going over it, page by page, for years. So when my first child was born, I passed this love of books on to her. And the same with her brother three years later. They were barely a few weeks old and they would get to listen to stories, and hold the books and play with them. Meg and Mog were favourites. So were the Billy Goats Gruff. As they got older I was given the chance to catch up on the classics of English language children’s literature (having missed out of them as a child since I was brought up in the French language): the original Winnie the Poo (not the sanitized Disney version), the genius of Roald Dahl, the fabulous Narnia Chronicles (I have been slowly savouring those again in the last few months) but to name of few.

So when Cathal was born, the magic was passed on by his parents, and myself, and books appeared around him within a very short time. In a way, they became quite important for him, especially when he was very sick in hospital after his open-heart surgery. I noticed that reading to him a short book, pointing out to the picture, getting him to “touch & feel” were ideally suited to him at that time: easy activities as they required little physical effort, and just enough to get his mind off the pain for a while.

I have kept one of the books his mother and uncle particularly liked. I consider it a little treasure. We read it every time Cathal comes to my home for a sleep-over (this is our thing, just the two of us, with no one else involved). It is the Cat and the Devil, originally a letter written by James Joyce himself to his grand-son Stephen in 1936 and put into book form, with wonderful illustrations, with Stephen Joyce’s blessing.

As I read it to Cathal, he listens with great attention, as if enraptured by the rhythm of the long and musical sentences, and by the sounds of the language, or languages, as French appears in the end, spoken by the Devil himself. I am not sure if he understands the story, or if he gets the wonderful humour present at every page – as any good story, humour is as much at the level of the 4 year old to whom the letter was addressed, as at the level of the adults who must have read it out loud to him. I mean the Lord Mayor of a little French town is called Alfred Byrne (true, just like a very famous Dublin Lord Mayor), and the Devil when very angry “can speak quite bad French very well… with a strong Dublin accent”. Wonderful.

And then, once I am finished reading, Cathal invariably takes the book and reads it back to me.

This has reminded me of the inspiring Karen Gaffney, a young woman who just happens to have DS. Last year, at the World Down Syndrome Congress in Dublin I heard her say that her favourite reads were Macbeth and Harry Potter. And I then thought, nothing is impossible for Cathal, all it takes is encouragement. So there it is:

Didn’t I tell you? Never too young to start reading James Joyce.



And have you noticed that at the end he says “more” as he wants another book? Just like me, can’t put them down.

The Biggest News of the Year (so far)!

Or “In Line for a 2nd Stripe”



Yes indeed. I must have done something right in my position of Grandmother, and proven that I can fulfil all duties and responsibilities as per the Job Spec. Otherwise, I am sure Cathal’s Mammy and the Dad would not be offering me a 2nd stripe to pin on my shoulder by early next year!

That’s right: Cathal will be a Big Bro in February. Wooohoooo is what I say to this. I thought I was excited when I first heard about Cathal, but this is different, and so much better. Because this time I am more prepared for what’s coming. I know what it’s all about. And I am really, truly, totally looking forward to it. It’s like having a sweet tooth and being offered a very nice desert: while you know it’s going to be a pleasurable experience, you don’t know how scrumptious it is until you taste it. Then it’s this big “Whoa” taste and you can’t get enough. And while you are taking your time savouring it, you are told that another different desert from the same chef is on the way to you…! How much better can this get? Heaven!

I do like these kinds of promotions. Keep them coming is what I say! Though other thoughts have crossed my mind as well.

The thought that it will be nice for Cathal’s Mammy and the Dad to have a more “typical” experience of parenthood, without all the trauma and drama of the diagnostic, of the hospitalization, of all the watching and extra care. I know having and raising any child is a full-time job. But I have realised that raising a Special Needs child is like a “double-time full-time” job. So it will be a change for them and I welcome it for them.

Also the thought that it will be brilliant for Cathal, getting him to take on Big Brother’s responsibilities will help him grow. And I am counting on the new little one to challenge him, and pull him and push him, just as any younger brother or sister would do, but even more so this case.

The only thing is that, at the back of my mind, I am thinking that even before he or she is born, there is this added responsibility looming in the distant future, responsibility for a special bigger brother that may need a little help with life every so often. I have already heard this sentiment about siblings expressed by a few parents, so I know my thinking is part of a normal process. In the end it’s nothing else than life and what it gives us. The natural order of things means that Cathal’s little brother or sister should be around, keeping an eye on him, long after their Mammy or their Dad are gone. But this is on the cards for him or her already!


Having said all this, I can’t wait for the Love Elastic to expand and stretch, and welcome this new arrival. More love to feel, and give, and receive. More opportunities for cuddles and hugs and kisses and fun. Bring it on!

Imagine… Imagine… Imaginosity!

Our power of imagination is probably one of the best intellectual activities humans have developed over the last few millennia.

Our imagination helps us extract reality from day-to-day routine, conceptualise it, and then escape. It can be very rewarding letting rip it in fantasy-land. It can be a pressure-release mechanism. I remember some years back in another “life” feeling under dreadful pressure at work, as my boss (who happened to own the business) was a bully: as his demands and tantrums got steadily worse, and as I knew I could not afford to come home to my two teenage children and disintegrate once inside the door, I found a nice way to deal with the situation: I started “talking” to my boss as I drove home, on a regular basis. After some particularly rough incidents earlier in the day, I would tell him exactly what I thought of him, why his behaviour was unacceptable, how he needed to change to get back some respect from his employees, how I deserved respect from him... and so on, and so on... and with some choice words to boot, just for the right effect. By the time I got home, I always felt better. This went on for months... until I finally was able to handle my letter of resignation, and finally, finally, oh joy! see him do a major psychological u-turn, sing my praise, and beg me to stay. But no way Jose, I was out of there and I never looked back.

Though this story might sound as if I have serious psychic issues, but my imagination actually saved my sanity in this instance.

Our imagination also helps us to learn. The conceptualisation process it involves means we can transfer situations to a different environment, and toy with them while staying in control, testing various options. Children do it all the time. The “pretend” play is just that, learning to cope with, and behave in, various events and settings. And it starts very young. And the majority of us (could I say 99.9%?) continue to play, for the rest of our lives.

The beauty of Imagination and its younger brother Play is that they can make us forget what we think we can and cannot do, what our perceived limitations may be. Once we play, anything is possible.

I took Cathal to Imaginosity a couple of weeks back, just quality time for him and me alone. It was my first time there, and I found it a great place, with everything needed to let Imagination rip from small baby to 9 year olds. It has little farms, a puppet theatre, a stage, story times, a building site with a working crane, a tv studio, a bank, a post office, a restaurant, a shop, a library, train sets, a dolls house, a doctor’s surgery, an activity room, a garage, and much much more...

Cathal became very engrossed in some of the games. He totally got the “play restaurant” thing, and pretended to eat and drink for ages... though when I saw him repeatedly putting the plastic cutlery and cups in his mouth, after probably lots of other kids who did the same thing, I had to remind myself that this is good for him, helping him built his immune system...? Yikes!

But most of all, what I enjoyed the most, apart from the excitement of the two of us going from one game to another, was the fact that Cathal, who is now 2 years and 4 months, who does not walk, who doesn’t stand much, nor for any long period of time, who is an expert at spreading his legs at a right angle to land on his bum when we put him down and he thinks there is the slightest possibility we might try and get him to stand... this clever little boy totally forgot all this, not just on one, but on two occasions.

First when he was by the Builders Site. There is a wall to be built with foam blocks, just big enough and light enough for toddlers to handle easily. He saw a little girl placing the green and purple blocks, immediately understood what was required, and joined in the construction. It was fine when working on the base while sitting on the floor, but as the blocks got higher, Cathal had to stretch more and more. When he came to a stage where, despite all his stretching, he could not reach any more, I did not say anything, just put hands on his hips, gently pushed him up, and there he was standing, and bending to pick another block, and straightening to place it, and bending again. With no idea that he was standing and bearing his own weight, needing my hands only for balance... once built, the wall was knocked down, and the process repeated from sitting position to stretching to standing at least four times! I was amazed...!

Then we moved on to the dolls’ house. He became fascinated with opening the doors to see into each room, with the little wooden dolls and their cloths, arranging and re-arranging all their furniture into the rooms, placing the dolls around, making sure the one he put in bed had a pillow and a blanket. Yet again, the “ground floor” could be reached while sitting down, but he could access the first floor only by standing up. And again I helped prop him up. And again magic happened... he never knew the physical impact of his playing... he just, simply... played. His Imagination was indeed ripping!

I took very few photos that day, because:
a. I was too engrossed myself in the experience to bother with the camera,
and b. it’s not easy propping up a toddler and taking a photo of said action at the same time – I may be a great granny, but I am not a super-granny... yet!

However, here are a couple of examples of his concentration:

The only draw back of Imaginosity is that it is a Strickly No Buggie place. They spell it out very clearly on their website. I can understand why, as if it gets busy, here would be little room for the children to move around safely. Cathal had been there before with his mammy and his buggie was not let in.

My problem was: he is getting big and heavy, and I did not fancy carrying him around for the best of 2 hours or so. So I decided to braze it out, and for the first time (for me) play the Special Needs card. When you get there, you need to give the age of the child to be charged the appropriate rate. So the young lady at the reception knew he was two. I asked, very innocently if I could bring in the buggie. The answer was as predicted. So I said: “Then, I have a problem. He may be 2 and a few months, but he does not walk. He has Special Needs, he has Down Syndrome.” The effect was immediate. The poor girl became very apologetic, saying that she “did not see” (it’s true, he was in his buggy, and below the edge of the desk, so below her normal range of vision), and then confirming that of course I could take the buggie in. The only thing is that the lift between floors is only for disable access so must be unlocked by a member of staff at each level. But to be fair to them, every one of them was most helpful at all times. And the fact that it was early a Sunday morning must have help...

I just felt strange having to “play that card”. But then, it was the first time, it had to be done, and I have to get used to such situations...



And talking about Imagination and Play, Cathal has an Aquadraw mat, which is absolutely brilliant. See for yourselves – filmed last Saturday morning, early, just after breakfast...

That child has bettter powers of concentration in the morning than I have, what do his parents give him? My own brain was still asleep at that time.

Run Forest, Run…

Not so sure about Forest, but this Little Granny has upped the ante. She is on fire, and already planning the next move…


Let’s put things into perspective:

Fact no. 1: This Little Granny can be very lazy if she puts her mind to it, and has no problem slouching on the sofa all evening, as well as most of a wet and windy weekend.

Fact no. 2: She likes exercising a bit, and actually really and truly enjoys the gym once she gets there, but need major motivation to just to… GET there!

Fact no. 3: Unless she is on a holiday in some weird and wonderful and exotic place where she will walk miles and kms and more miles to savour scenery, fauna, flora, and other such natural beauties, this Little Granny will find any excuse to use her car. In short, by choice, she does not walk much.



Now for the events:

Event no. 1: Last year, prompted to participate and raise some much needed funds for the Dublin Branch of Down Syndrome Ireland, she walked the 2009 Dublin Women’s Mini-Marathon with Cathal’s Mammy.

Statistical Results: 10 kilometres in 1h 50 m = average of 1 kilometre in 11 minutes
Emotional Results: Quite happy with herself, for a first time doing something like this!



Event no. 2: This year, boosted by last year’s performance (in her words at the time: “it’s doable”), she not only decided to take part again, but to pick up the pace somewhat, and she power-walked the 2010 Dublin Women’s Mini-Marathon on her own for Heart Children Ireland.

Statistical Results: 10 kilometres in 1h 35 m = average of 1 kilometre in 9 ½ minutes
Emotional Results: Very happy with herself! In fact, quite proud!



Boosted by the Statistical Results of Event no. 2, she went home, had a good think, made some enquiries, researched and bought adequate footwear (very, very important!), went back into training, and signed up for the next event - with only five weeks to get up to some kind of “speed” both on the treadmill in the gym and on country roads around her village. Which brings us to:



Event no. 3: Combining power-walking (going up hills and on some of the flat) and lifting off to a nice jog (going down hills and on as much of the flat as her energy would allow her) last Saturday she not only Started, but Passed the finish line of the Irish Runner Race Series – 5 Mile Race in the Phoenix Park. Her first chipped race ever!!! She even got the T-shirt and goody bag to prove it. But most importantly:

Statistical Results: 5 miles or 8 kilometres in 1h 3 m 40 s = average 1 kilometre in 8 minutes
Emotional Results: Amazed first at the time showing up on her phone stopwatch. Once time confirmed by the official results from the chip, Very Very Proud indeed!

And all this in freezing temperatures – well, almost, but only 14 degrees last Saturday morning, it’s July for goodness sake! – wind, and half way through a drizzle that turned into a absolute downpour for the last 800 metres.


And this Little Granny got even prouder when she realised that, though she finished 40 minutes behind the winner, though she finished 4745th, she was still 30 minutes faster that the 4875th and last participant to cross the line.


So now her eyes and her newly found jogging legs have their sight on an even faster 2011 Women’s Mini-Marathon. Because she has realised that she really, yes really enjoys this jogging business.

So Run, Little Granny, Run…

PS: Do not let the title of this post fool you. I did not particularly like the film, probably because of Hanks: somehow I can’t “click” with him!

“Whaza?”... Progress, that’s what it is!

« Kèssè? » ... Du Progrès, voilà ce que c’est !



I was very impressed a couple of weeks ago to hear Cathal saying to me “bi-KKKK”. It took me a few seconds to realise that instead of signing “biscuit” he was saying the word. In fact, Cathal is making incredible progress in with his communication. Every time I see him I need to catch up with his latest acquisitions. It seems that as he masters one sign, he wants to move on to the verbal expression of it. Which is exactly the intention of using signs as a support and as a facilitating tool for verbal communication.

Il y a environ deux semaines, j’ai été très contente d’entendre Cathal me dire « bi-KKKK ». Il m’a fallut quelques secondes pour réaliser qu’au lieu de faire le signe pour « biscuit » il disait le mot. En effet, Cathal fait de grands progrès en terme de communication. Chaque fois que je le vois je dois me mettre à jour de ses dernières acquisitions. Il semble que dès qu’il a acquis un signe, il veut passer à l’expression verbal du mot. Ce qui est exactement la raison d’utiliser les signes comme moyen de support pour aider la communication verbale.

Among his latest words:
- “Whaza?” = “What is that?” Obviously he must be asked this question so often that he is now asking it back.
- “Where” followed by pointing at the object or the person with a triumphant “there!”
- some colours, though he can mix the signs for one or the other. But in the next 2 videos, we can clearly hear “oooo” for “blue”, “eeee” for green, “ed” for “red”
- “NO” if he disagrees (and he does, a lot... typical 2 year old!) or “Nooooo” with a smile when we are playing a game, like pointing at lots of different animals and saying “is that the cat?”

Parmi ses derniers mots:
- “Whaza?” = “What is that?” qui pourrait se traduire par « Kèssè? »Apparemment on lui pose cette question tellement souvent qu’il la pose à son tour.
- “Where” (c’est à dire: « où ») suivi d’un triomphant “there!” « là! »
- certaines couleurs, entre le bleu, le vert, le rouge, bien qu’il mélange un peu les signes pour ces couleurs, mais les sons correspondent. Dans les deux vidéos qui suivent, on entend bien ces sons en anglais.
- l’équivalent de « NON » quand il n’est pas du même avis que nous (et c’est souvent... typique d’un enfant de 2 ans !) ou « Nooooon » avec un sourire quand on joue, par exemple en montrant du doigt plusieurs animaux différent et demandant : « c’est le chat ? »


(I apologise for the sound of the 1st video, it was very windy that day. But what we can hear show how good he is! And shows how good his Mammy is at signing!)

(Je m’excuse pour la qualité du son de la 1ère vidéo, il y avait beaucoup de vent ce jour là. Mais on peut entendre comme il communique bien ! Et comme sa Maman sait bien utiliser le langage par signes !)









Little explanation for those who may be interested: Verbal communication is one of the human activities most difficult to learn. The whole purpose of signing is to enable the child with learning difficulties to express himself/herself in a way that is easier to master than verbal communication. It is used as reinforcement to verbal communication, and a stepping stone towards the spoken word. The Irish sign language taught to young children with learning difficulties (Lámh, which means “hands” in Irish) has about 400 words.

Petite explication pour ceux qui peuvent être intéressés: La communication verbale est une des activités humaine les plus difficiles à apprendre. Le rôle du langage par signes est de donner à l’enfant ayant des difficultés d’apprentissage un moyen de s’exprimer qui est plus facile à apprendre que la communication verbale. C’est utilisé comme soutien à la communication verbale, et comme point de départ vers le mot parlé. Le langage par signes enseigné aux jeunes enfants en Irlande (Lámh, ce qui veut dire « mains » en irlandais) a environ 400 mots.



There was a time, was Cathal was about 11 months old, when I got somewhat worried about the fact that he was not a bit interested in solid food, his mammy’s milk being so much nicer. Cathal demonstrated to me at the time that I should trust him. I can officially confirm that he was right, I needn’t have worried. And one of his favourite foods is... “patttt” = pasta! To a point that when asked in the morning if he wants his breakfast, he has been known to answer: “No! Pattttt”. And later on if he wants lunch, his answer is often: “No! Pattttt”. And finally when told in the evening that dinner is ready: “No! Pattttt”. And sometimes, all these answers for each meal of the same day! Why do so many children like pasta so much?

Il fut un temps, quand Cathal avait environ 11 mois, où j’étais un peu inquiète du fait qu’il n’était pas du tout intéressé par la nourriture solide, le lait de sa maman étant si bon. Cathal m’a démontré à ce moment là que je devais lui faire confiance. Je peux officiellement confirmer qu’il avait raison, que je n’avais aucune raison de m’inquiéter. Et un de ses aliments préféré est... « pattttt » = les pâtes ! Au point que quand on lui demande le matin s’il veut son petit déjeuner, il lui arrive de répondre : « No ! Patttt ». Et plus tard s’il veut déjeuner, sa réponse est souvent : « No ! Patttt ». Et finalement le soir quand on lui dit que le dîner est prêt : « No ! Patttt ». Et souvent toutes ces réponses pour chaque repas de la même journée ! Pourquoi tant d’enfants aiment-ils ainsi les pâtes ?


And when pasta is on the menu, he now eats all of it and on his own, with virtually no help.

Et quand les pâtes sont au menu, il mange maintenant tout et tout seul, avec presque pas d’aide.





The result is a belly full of homemade lasagna (his mammy’s cooking) and a very happy little boy!

Le résultat est un estomac plein de lasagne faite-maison (par sa maman) et un petit garçon très heureux !

Marriage? Did you say Marriage?

Or Racism et al – Part 2


Some time ago I posted on “Ageism, Racism and Abilitism” in a general way, on what I had witnessed in others. And I did write that I would come back to the topic on a more personal basis. Then I got busy with this, that, the other, months passed… and Part 2 got pushed aside. But this week some event reminded me of my intention, so here goes. Put on your sun lotion, shield your eyes with dark glasses, and hold on to your sun hat, this may be a bit “hot”… (after all, it is summer!)


Once upon a time, once upon several centuries in fact, in places quite close to us, marriage outside of one’s class was not even thought of. One could not look at another human “beneath” one.

Once upon a time, in places quite close to us, marriage outside of one’s race could not be considered. Whites married whites, blacks married blacks. That was the only order of things.

Once upon a time, once upon countries, marriage outside of one’s cast or one’s religion was taboo. The Big No-No!

And then, in some countries, in some times, slowly things changed. People who fell in love were increasingly allowed to pledge themselves to each other, irrespective of class, race, cast, or religion. Some parts of our little planet were “growing up”, becoming more tolerant, less bigoted.

And once upon this week, Ireland grew up a little. A few days ago I heard it said that Ireland came of age, albeit in a small way. The Civil Partnership Bill was passed in Dáil Éireann (the Irish Parliament) with such a majority that no vote needed to be taken. It was unanimous - makes a change after the previous bill earlier in the week, all about some stags, and dogs… and other such crucially important piece of legislation for the recovery of our economy! Some circus this was! Sorry for the digression, but sometimes I really wonder about our politicians!

So the Civil Partnership bill was passed. It does not allow same-sex marriage per se, it does not recognise the children of same-sex unions. BUT, to some extent, it does recognise that such long term relationships exist, such unions are facts, and it does recognise the rights of same-sex partners. It’s a start.

To put things into perspective, sexual acts between men stopped being a criminal offence only 18 years ago! (Interestingly, the possibility of sexual acts between two women had not even been thought of by the authors of this law! More bigotry). It took David Norris 5 years of legal battles in the Irish High Court, then in the Irish Supreme Court, and finally in the European Court of Human Rights, before Ireland was shamed and forced to repeal an antiquated law dating back to the old British rule, and pass its own legislation. That in itself took another 5 years, just for the government of the time to think of an appropriate wording that simply would state: if you are an adult and gay, and engage in consensual sexual acts with someone of the same sex as you, in the privacy of your own home, you are not a criminal.

The road travelled is slow, but it’s is travelled.

And to think that the same David Norris could be running for the Irish Presidency next year. That would be something!


Now, let’s shift time and space. And come to once upon last summer, in Dublin, with yours truly attending the World Down Syndrome Congress.

So I walked in the Helix building in DCU on the first morning. Being a little early before the start of the first plenary session, I took a wander around the various stands outside the auditorium: they were about books, various educational aids, research, celebration of athletes, various DS organisations, paintings and other art forms by people with DS, life testimonies, including the marriage of a young woman with DS and a man without DS… did I see right? Marriage? To my own surprise, I am ashamed to say I did a double take. Me, the liberal, the person who gets so wound up so quickly about what I perceive as basic human rights – a certain group of people who know me well have a saying: “here she goes again!” and they almost do it on purpose to push my button, so sure are they of my reaction! – indeed, I was taken aback.

I did not have much time to think about what was happening, as the bell rung for the first plenary session, so I went in to take my seat. And there, what did I hear, but the second speaker, David Hingsburger, addressing the congress on the topic of Self Concept, and telling the story of two people he had worked with, one of whom had DS, who had been shun by their community for being in love and for wanting to get married.

And all through the three days of the congress, the word “marriage” kept coming back. It took me a few days for me to understand my reaction that first morning. I had simply never thought of relationships outside of the family, and by this I mean romantic relationships, as a probability, even as a possibility, for someone with DS. For some reason, what I would consider as the normal way of life, did not apply in this case. What I would wish for anybody else did not cross my mind in the case of someone with DS. Shame on me!

I have since come back from this. I had read and heard testimonies, and seen marriage videos on the net and on some blogs that have quite moved me. But the liberal Nan P realised she was not “that” liberal up to last summer.

The thing is, she is not the only one! In fact, the law as it currently stands in Ireland is not a bit liberal for people with an intellectual disability. Over the last few months, it has come to my attention that people with an intellectual disability, under the law:

- can be refused opening a bank account, taking out a loan, owning property,

- do not need to be asked for their consent for medical treatments,

- can be refused the right to vote if the returning officer of their polling station decides they do not have the “capacity” to vote.
- can be denied access to justice because of their disability, especially in case of assaults, as the judge has the right to decide they do not have the “capacity” to testify.
- can be considered as criminals if they engage in a sexual relationship with another person with an intellectual disability. The extent of this is that the right of people with an intellectual disability to have consenting relationships is in doubt under law, and this implies the right to get married.

The last point refers to the Criminal Law (Sexual Offences) Act 1993, a recent enough piece of legislation.

But the essence the other points above refers to, wait for it, wait for it… the Lunacy Act of 1871.

Don’t you love the language of choice? Don’t you love the fact that yet another antiquated law, passed during “British Rule”, decides on what a person with DS, or a person with Autism, can or cannot do?

The law need to be changed. Interestingly, Ireland was among the first countries to sign the Convention on the Rights of Persons with Disabilities in March 2007. The then Justice Minister Michael McDowell had said it would be ratified “as soon as possible”. However, before it can be ratified, modern legislation must be introduced to remove all the “anomalies” listed above.

Three years later we are still waiting… Nothing is moving, nothing is stirring…

Ireland may have come of age somewhat this week. But it certainly is not fully mature yet. Forms of racism and abilitism are not only still rampant in our society, they are enshrined in our laws.

As for this post, please accept it as my “mea culpa”, and proof of my own “growing up” ;-)