23 August 2009


What an experience I have had in the last 3 days as I attended the World Down Syndrome Congress in Dublin! I will not be able to do it justice in one single post, but I wish to convey here the two foremost impressions I have taken home with me.

During the opening ceremony, May Gannon (who works with Down Syndrome Ireland, whom I have had the pleasure to meet several times, and who is the person who rung me and asked me to chair the Grandparents session last Thursday) highlighted a point which made a lot of sense to me. In essence she defined Abilities and Potential as follows:

- Ability is what I can do now
- Potential is what I will be able to do, given the right environment and circumstances

I know that this is true of everyone of us, DS and no DS. But this got me thinking about what is especially important where the extra chromosome 21 is involved, and in particular who has which responsibilities:

- It is Cathal’s responsibility to use his abilities to the full.
- However it is the responsibility of all around him, and in the first instance family members, to ensure that the environment around him, and the circumstances in which he lives his life give him the potential to discover and develop his abilities. This includes me.

Following on this, my second impression is that of a much deeper understanding of what having respect for someone means. Over the three days I have witnessed some very strong and emotionally charged moments, I have met some incredible people, and I found myself feeling very humbled by them. My sense of respect for others has deepened to a level that goes far beyond the appearance, far beyond the knowledge of what people might have done or achieved, but seems to touch on the very essence and beauty of what it is to be a human being. For once, words fail me, I cannot quite express the awareness within me, and the emotions that accompany it. However I know that there were several moments that may qualify as “defining”.

Of all the people I heard and met, I will talk of the family members and the professionals at another time. Those who touched me the most, and brought this new understanding in me, all have Down Syndrome. To mention but a few (and in no particular order):

Emmanuel Bishop, a 12 years old boy, who had the courage to stand on the stage of the Mahony Hall in the Helix, and play the violin in front of an audience of over 900 people.

A young woman (whose name I did not write down and can’t remember now, dam it!), who was one of the ambassadors. The main role of the ambassadors was to stand at the podium in front the same audience, during the plenary lectures every morning, and each would introduce a speaker. This young woman walked to the podium and said “before I do what I am supposed to do, I want to say something” – the last speaker had given an update on research into Hearing and the importance of correction, as well as an outline of the various methods currently available. She went on to state that she agreed with the last speaker, that hearing properly was critical in the life of people with DS, and that we should all remember that one cannot communicate properly if they don’t hear properly. She then thanked her parents for making sure she could hear. And, with an ease that made me very humble indeed, she said: “I thought it was important to say this. Now I’ll go back to what I have to do: my name is --- and I would like to introduce to you Prof ---”.

How many of us would have had the aplomb and the courage to interrupt such official proceedings and give a personal opinion, with as clear and concise language as she did? Respect, indeed!

Karen Gaffney, who was one of two speakers giving the Plenary Lecture dedicated to literacy, and spoke ad lib (yes, without notes, I could not have done that!) of her love for reading, of the enjoyment she gets from reading such diverse authors as JK Rowling, William Shakespeare (Much Ado About Nothing being her favourite play) and most of all her favourite author Jane Austin. As a conclusion to a very structured speech, her last message was to keep an open mind: “Who knows, your child might one day read Hamlet and love it!” (to learn more about her, click here).

I had the honour of meeting young Scottish man, whose name escapes me (my memory of names is very deficient, if I don’t write them down immediately, they are gone for ever!), and we had a great conversation about travelling. We ended up listing and comparing which countries we had visited, and he beat me hands down. It was so enjoyable, he made me dream, and my feet got all itchy. He reminded me that I often wish I had enough financial independence to quit work, hop on a plane, and go where ever the fancy would take me. But he also made me see that discovering the diversity of our planet starts at home, by discovering the diversity of humanity around us, something we often forget.

I also had the honour of meeting Dylan Kuehl, from Washington State in the US. Cheri had posted about him some months back, I had gone on his website before (click here) and loved his paintings, one in particular – and yes, I did purchase a print of it! Dylan claims to be unique, like every one of us, and indeed the conversation we had about his art proved that. Again, I was so humbled, as I cannot for the life of me draw or paint – my hand writing is so bad that I am the only one who can read it, and if I take notes for someone else, I type them to make sure they can be understood. So Major Respect here!

I was privileged to witness the very slick presentation of an extraordinary young man, Sujeet Desai - slides, videos, talk, and live examples of his talents. Sujeet is an accomplished and professional musician (violin, piano, clarinet, sax, and drums, as well as a composer), a Special Olympics medallist (he is involved in swimming, skiing, and Taekwon-do), he draws and writes poetry, he is about to do his driving test, he is married… listening to him, and meeting him later on, I wondered what the word “disability” actually meant??? Go on his website and see for yourself.

Last but not least, Luan (again, I can’t remember his surname. Sorry!) who addressed participants during the closing ceremony. Luan is a Self-Advocate. As a member of the Board of Down Syndrome South Africa, he invited all present to join him at the next World Congress in Cape Town in 2012. Considering his mother tongue is Afrikaans, his presentation in English was absolutely superb, and the event so tempting.

My birthday fell right in the middle of the Congress, and the people I mentioned above have given me a great gift to start another year: a better understanding of what true, unconditional Respect is all about.

Right now, I feel all “congressed” out, and am very glad I am flying off tomorrow for a week in the sun. If anything, I need to reflect on all I heard and saw.

PS: if you are wandering why I do not have any photos on this post, the reason is very basic: it would be very disrespectful of me to put on the net photos of people without their agreement, wouldn’t it?
See? Respect!

19 August 2009

D is for…

D is for Donkey,

and for Ducks,

and apparently for Chickens,

and for Tricks!

En anglais, D est pour « Donkey » = âne

Et pour « Ducks » = canards

Mais apparemment aussi pour poules, et pour performance !

And also for Hugs, of course!

Et aussi pour Câlins, bien sur !

Sorry for the sound: today was warm, but oh so windy!
Désolée pour le son, il faisait bon aujourd’hui, mais avec beaucoup de vent !

18 August 2009

Sleep Over

Cathal came over this weekend to spend a night, away from his Mammy and his Daddy who where otherwise occupied. It was the first time he had been away from them for more than a few hours, and he was very good. Need I say that we had fun? But he was very, very happy to see them again, 24 hours is a long time for a little one.

I am not sure if he thought he was going camping, but he had bought his portable seat, and his bubble bed.

Hummm! Rice cakes!

A good night sleep is all I need

Sunday morning, and after breakfast (a Very Early breakfast!) I got him to discover a very special set: a desk and chair that were used by his uncle when he was small,

and Cathal’s Mammy before that,

and Cathal’s Mammy’s aunt before that (e.g. my little sister),

... and

... me before that!

Yes, this desk and this chair were mine when I was very small, and I still have them. I brought them over from France years ago when my children were small, so they could use them.

And now it’s Cathal’s turn. How cool is that?

03 August 2009

August is here… and Dublin is It!

Apparently, August is here. Looking out, you would not think it. The summer seems to have been here for a few days in, when was it? May or early June, may be... and then truly gone. Where is the sun? And I mean lasting sun, not just a few minutes to tease you outdoors and then reward your courage with a magnificent and powerful rain shower. I mean, come on! Third rotten summer in a row... enough is enough!

Anyway, the calendar tells us that August is here, and Dublin is indeed it this month. A lot of people will experience our beautiful “Irish” weather the third week of this month, as they come from all over the world to the 10th World Down Syndrome Congress 2009.

I do believe that they are no coincidences, but rather “god incidences”. I do believe that things happen for a reason, though most of the time we, little humans, with our limited intelligence, cannot start to phantom the reasons why. I do believe that my agnostic god, whom I chose to call “Mother” (we all need a mother, and they have been times in my life when I needed a Mammy very, very badly...) guides me to what I need. So when I discovered last year, only a few months after Cathal’s birth and his diagnosis, that this world event was going to happen almost on my door step, I did feel Her power.

I decided earlier this year to attend this Congress. After all I felt as entitled as anyone touched by the grace of Down Syndrome to do so. I have been saying for years and years that I want to live to celebrate my 100th birthday, because life is so rich that I want to experience as much as possible. I have spend the first half going through childhood, teens, early adulthood with marriage and motherhood, studies, professional development. The second half started with the announcement of my promotion to grand-motherhood. And, as it turned out, to the world of Special Needs. The possibility of this had never entered my mind. Never ever! Shows how little I know of life! One way or the other, DS is going to colour my next 50 years or so. Better know more about it.

The other reason for my registering was that I need the contact with others who have been there, done that, and are wearing the T-shirt. As Cheri has put it in her most recent post, it’s being with people who “get it” that is important to me. Not only to gather information, but most importantly to share the feelings, the emotions, the reactions. Also I need the reassurance. Meeting other children with DS, meeting adults with DS, is something I know I need, deep down, to reinforce the feeling that Cathal will be “alright”. Because, of course, I do worry for him. And I do worry for his parents. It’s a normal reaction, but anything I can find to sustain my positive attitude, my hope for a rich and fulfilling life for him, anything at all is welcome. That is the reason I love meeting with Cathal’s friends, just to know that, like any other child of his age, he has that little circle around him. The theme of the Congress is Lifelong Living and Learning! It says it all.

So I am looking forward to those three days from the 20th to the 22nd August. It is also important for me to know that, apart from the main programme, there is one for the medical people, those who, long term, can make a difference to the quality of Cathal’s life. And then there is, for the first time ever, the 1st International Synod of People with Down Syndrome. As the website puts it: “The purpose of the Synod is to give adults and young people with Down syndrome an opportunity to meet their peers from across the globe and to discuss issues that affect their daily lives”. I find this so encouraging!

But then, there is another aspect to the congress that is of particular interest to me. If you look carefully at the programme, you will see that on Thursday 20th, in the afternoon, there is a session specifically for... that’s right! Grandparents! And guess what...? I recently got a call from the “powers that be” (e.g. organisers in DSI) asking me if I would host this session… Me! Host it! I reminded the person who rung me that, by then, the height of my experience of DS will be all of, let’s see, just over 17 months! I was told that the length makes no difference, it’s what we feel that is important. As I understand it, my role will be more of a facilitator than a speaker. Good! Because I want to hear from others. I need to hear from others.

We have no idea how many will attend this session. If they are only 3 of us in the room, we will have plenty to talk about I am sure, and plenty of time to do so. And if they are more, all the better! But if you are reading this and you are a grandparent, or you know of a grandparent who would be interested in this particular session, spread the word around. As a matter of interest, Irish DSI members can register just for one day of the congress if they do not want to attend the full 3 days - details here.

I am so looking forward to this Congress! And I do not expect anything special from it, but to meet with people and talk, listen, talk some more, listen some more! Hope to see a lot of you there!
And let’s not worry about the weather. All those travelling to Ireland for the Congress can be assured of a very WARM welcome – aren’t the Irish most famous for it?

Months ago, I had booked my holidays with work for the last 2 weeks of August. I thought: “ a couple of days to laze around the house, the three intensive days of the Congress as the highlight of my holidays, and then the following week to laze some more and recover”. Hmmm... Then the “beautiful and warm” summer faded and I realised I need Heat, I need Sun. So I started looking for a cheap holiday for that last August week. I did find a good value flight, direct from Dublin to Alghero in Sardinia. I have completed all my bookings this weekend. It’s turning out not so cheap after all: I am not one for sitting in the sun on the beach or by the pool: I LOVE the sun, but it has a very stormy relationship with my skin, as I turn a magnificent bright crisp vermilion red after a short time, and even after thickly coating Factor 50 Sun Block! So I have opted for a week of discovery of some of this Mediterranean island: natural sights and wonders (sea and mountains), nature parks, a bit of culture and archaeological sites, and gastronomy sampling. All in all, 7 days and 7 nights, 3 different hotels, a hired car, a guide book (I swear by Lonely Planet, never let me down), a detailed map, and my own company… so not that cheap, but at least a total break from day to day life. Quality “me” time to recharge the batteries and face the winter...