Friends!

Amis!


It’s official. We are friends. And I am not the one saying it!

C’est officiel. Nous sommes amis. Et ce n’est pas moi qui le dis!


The younger we are, the easier it is to show our emotions. It is when we grow older that we learn to hide them (for all kinds of reasons) or to minimize them. However expressing our feelings at a young age can be a difficult task. Emotions are felt, where as feelings, to be expressed, imply conceptualisation. That is in itself a complex process.

Plus nous sommes jeunes, plus il nous est facile de montrer nos émotions. C’est quand nous grandissons que nous apprenons à les cacher (pour toutes sortes de raisons) ou à les minimiser. Par contre exprimer nos sentiments à un jeune age peut être difficile. Les émotions sont ressenties, alors que les sentiments, pour être exprimés, doivent être conceptualisés. Ceci est en soit un processus compliqué.


I spent some time in Cathal’s home yesterday. At one stage he and I were taking a well deserved little break from all the playing and “messing around” we had been immersed in. Cathal was sitting on my lap facing me. We were both silent, just quietly looking at each other. And then, very gently, Cathal’s right hand took hold of his left and shook it firmly once – the Lámh sign for “friends”!

J’étais chez Cathal hier. A un certain moment lui et moi faisions une petite pause bien méritée après nous être immergés dans pleins de jeux et de chahutages. Cathal était assis sur mes genoux, tourné vers moi. Nous étions tous les deux silencieux, nous regardant calmement. Et alors, tout doucement, la main droite de Cathal a pris sa main gauche et l’a secouée une fois fermement - en langage par signes qu’il apprend c’est le signe pour «amis»!


The important thing for all communication to be effective is that the message must be received and understood as it is meant when it is transmitted. So I decided to carry out my own check on this. I asked Cathal, refraining from signing to ensure I did not influence him, “Are you and I friends? Are we friends?”

L’important pour que toute communication soit effective est que le message soit reçu et compris comme il est destiné l’être au moment de la transmission. Donc j’ai décidé de faire ma propre vérification. J’ai demandé à Cathal, en faisant bien attention de ne pas faire de gestes pour ne pas l’influencer, « Toi et moi sommes amis ? Nous sommes amis ? »


And there was the sign again, right hand holding left hand, shook firmly once, but this time accompanied with a beautiful wide smile…. We are friends! We are friends! And Cathal has shown me yesterday that he can not only give his opinion on our relationship, but he knows exactly what he is talking about, because it was perfectly in context, as a conclusion of a very nice time spent together.

Et re-voici le signe, main droite tenant main gauche, secouée une fois fermement, mais accompagné cette fois d’un radieux sourire… Nous sommes amis ! Nous sommes amis ! Et Cathal m’a démonté hier que non seulement il peut exprimer son opinion sur notre relation, mais il sait exactement de quoi il parle, parce que c’était parfaitement en contexte, à la fin d’un bon moment passé ensemble.



To come back to the subject of emotions, I am always struck by the speed at which Cathal’s face can change: within a few seconds, every emotion, everything he is thinking can show, and there is no half measure. Here are some examples taken recently, in the order the photos were taken, and all within 2 minutes:

Pour en revenir au sujet des émotions, je suis toujours étonnée de la rapidité avec laquelle les expressions de visage de Cathal peuvent changer : en quelques secondes, chaque émotion, chaque pensée s’y affiche, et il n’y a pas de demi-mesure. Voici quelques exemples pris récemment, dans l’ordre où les photos furent prisent, et tout cela en moins de deux minutes :


Pretending to sulk, yet finding it hard not to let out the fun side of things at the same time (I recognise another family member in this little face…) – Faisant semblant de bouder, mais ayant des difficultés à ne pas laisser échapper le côté drôle de la situation (je reconnais un autre membre de la famille dans ce petit visage…)

Protest – Protestation

Oh, I am so cute! – Oh, je suis si adorable !

Interest – Intérêt

Joy – Joie

Sulking again (When will you ever stop taking those photos?) – Boudant de nouveau (Quand vas-tu arrêter de prendre des photos ?)

My favourite of the series – Ma préférée de la série

PS
Cathal has shown enormous progress in the last two weeks, and yesterday I could barely believe my eyes as I was watching him playing by himself or interacting with us. There is no doubt that lately a lot of things have suddenly clicked into place in his little head. Most importantly, I can see that the enormous work, time and energy spend by his Mammy daily (and the Dad) are really bearing fruit. Bravo!

Cathal fait démonstration d’un énorme progrès ces deux dernières semaines, et hier j’avais du mal à croire ce que je voyais en l’observant jouant seul ou communiquant avec nous. Il n’y a pas de doute que récemment beaucoup de choses se sont mises en place dans sa petite tête. Mais le plus important est que je peux constater que le travail énorme accompli, le temps passé et l’énergie dépensée tous les jours par la Maman (et le Papa) portent vraiment des fruits. Bravo !

Precious Moments

Moments précieux


Every Wednesday night Cathal’s Mammy and the Dad go back to school (apparently all to do with Cathal, and communications, and all that…) so Cathal and I can spend some time together, without the parents around… Yeah!

Tous les mercredis soir, la Maman et le Papa de Cathal retournent à l’école (apparemment cela à pour sujet Cathal, la communication, et tout ça…) et Cathal et moi pouvons donc passer des moments ensembles, sans les parents… Youpi !


We take this opportunity to catch up on all the news of the last few days, on all the gossip, on all each other’s exploits. We continue chatting over diner, after which Cathal demonstrates to me his latest discoveries. Then it’s bath time, followed by a story read and commented upon, one or two lullabies (in French), a big hug, and bed… preferably before the parents come back, but this is not always the case! ;-)

Nous en profitons donc pour faire le point des nouvelles depuis les derniers jours, des racontars, des exploits de l’un et de l’autre. Nous continuons la conversation pendant le dîner, après quoi Cathal me fait démonstration de ses dernières découvertes. Puis c’est l’heure du bain, suivi d’une histoire lue et commentée, une berceuse ou deux (en français), un gros câlin, et le lit … de préférence avant que les parents ne reviennent, mais ce n’est pas toujours le cas ! ;-)

Pure pleasure!

Un vrai plaisir !

You talking to me? Tu me parles ?

Reading to Marvin, the cat. Lecture à Marvin, le chat.

So, you listening to me? Alors, tu m'écoutes ?

Pretend sleep. Faire semblant de dormir.

I AM ANGRY, VERY ANGRY!

I am indeed so angry that I have decided to take action. In conscience, I can no longer remain silent. My sense of injustice has reached it’s tolerable limit. I have cried at listening to some of the stories in the last few weeks, or reading about them in the media, or on the Down Syndrome Ireland Forum website.

So today I emailed our Minister for Health and Children, and then forwarded this to my three locally elected representatives (including the “chancer” who assured himself last year that I would never vote for him – click here and then here if you are interested in the details) asking them to acknowledge my correspondence and take action on the strength of it. I have also forwarded it to the editors of four newspapers: the Irish Times, the Irish Independent, the Irish Examiner, and the Harold (simply because this paper seems to have been at the forefront of the campaign against the budget cutbacks in Crumlin).

I am not very hopeful of any feedback, and even less of any action.

But DAM IT, my anger had to be expressed.

I know that different groups have taken and continue to take different types of action to raise awareness of this intolerable situation, and try to bring about change. At the end of the day, the more of us express our concerns, in whichever form suits us best, the more chances we may have to be heard.

Because CHILDREN’S LIVES ARE AT RISK HERE!

I let you all decide for yourself what, if anything, you may wish to do on this topic. But if you can do something, thank you.

Here is an exact copy of my email to Ms Harney:


Dear Minister Harney,

I am writing to you today as a very concerned citizen, regarding the current waiting list for heart surgery in our Lady’s Children’s Hospital, Crumlin.

I expect that you will at a minimum acknowledge receipt of this correspondence, and hopefully confirm to me your position in this regards.

First allow me to tell you a little story: I am the grandmother of Cathal, who was diagnosed at birth in March 2008 with three severe congenital heart defects. I remember thinking at the time that, had he been born in a less developed country, or in Ireland but 20 years earlier, he would not have had any chance to survive pass a few weeks. But this is Ireland in the 21st century, and Our Lady’s Children’s Hospital in Crumlin boasts some of the finest paediatric cardiac surgeons in Europe. So he was lucky! Indeed, he had his first heart surgery in April 2008, but we quickly realised he was not so “lucky”: even though he was considered a high priority case, he had to be put on a waiting list as there was no room in the Cardiac Intensive Care Unit for him to go post surgery. After two weeks of a wait, he deteriorated so much that he became critical, another child who was not as critical as him had to leave ICU, and he had his life saving surgery early one Sunday morning.

This is not the end of the story for Cathal: this surgery was only an intermediate measure, to allow him to grow stronger for his vital open heart surgery. He was finally called for it in March 2009, and until he was actually taken into theatre, there was no assurance the surgery would be carried out – again, a lack of ICU beds was the problem.

In the last few weeks, increasing reports have come into the media of so many children whose open heart surgery has been delayed because of a lack of ICU beds, that I realise, once again, that Cathal was indeed lucky earlier this year! Long term, he may require further surgery. Will his luck hold out then?


As Minister for Health and Children, you are ultimately responsible for ensuring that every person in this country, including every child, has access to the care he or she needs. So how can you justify that life saving operations cannot be performed, when the staff is available and the equipment is in place and waiting?

How can you justify that “luck” decide whether a child lives or dies?

How can you justify that Our Lady’s Children’s Hospital, being the only paediatric cardiac centre in the country and as such a Centre of Excellence – a concept you have been championing so vehemently – cannot do what it is designed to do because of a lack of ICU beds?

How can you justify that, although about 400 heart surgeries are performed there every year, and although every child in the country with a heart condition is referred to this hospital, there are only eight cardiac ICU beds?

I understand that the waiting list for heart surgery is currently over 100. How can you justify putting the life of these 100 or so children at risk? The decision to operate on someone’s heart is never taken lightly, and if the consultants decide on it, it must be done.

How can you justify the mental and emotional anguish this is causing parents and other family members?

And if you wish to bring it back to budgets and financials issues, how can you justify the mismanagement of public finances these delays in treatment are causing the state? Because, in the long term, the financial cost to the state of treating increasingly sick children is going to grow. My taxes are paying for this, and I much prefer them to be used for the funding of surgery of these children now, that the extra funding of additional treatment in the future, should the majority of these children be “lucky” enough to survive.

Minister, you have been in your current position for over five years. You have had the will to effect a lot of changes during this time. Do you now have the will to ensure that the lives of children are preserved? If you have, please communicate to me, as a very concerned citizen and to the country at large that, within the next few weeks, cardiac ICU beds will be made available in Crumlin. Space for these can be found within the hospital itself; Equipment and machinery can be purchased on a priority basis as soon as funds are made available, and the extra staff recruited by simply lifting the embargo on recruitment for this particular instance. If there is a will, there is a way.

I understand that more cardiac ICU beds will be available in 18 months time. This is 18 months too late! So please answer this: do you have the will to effect a change now? If not, your position as Minister for Health and Children is no longer tenable, and you are expected to step down and let someone else, who has the will and competence, take your place.

Finally, consider this: if your own child, or a niece or nephew, was on the waiting list, would you not do all in your power to ensure they live? I am asking nothing less here.

I am sending you a printed copy of this email by registered post. As an elected representative, it is your duty to acknowledge this correspondence and reply to it.

Yours respectfully,


Name and address.


Now let’s wait and see.

UP with Hammie and Boo

Or Racism et al. (part 1)


I was very honoured this week to be asked to join Hammie and her son Boo to go and see the film UP with them yesterday. I love animation movies, I am quite a fan in fact, and have been for a long time. Truth be told, I probably not only never “grew” out of them, but enjoy them more as time goes by: the level of sophistication, on the technical side of course, but also in the way most of these films are so cleverly designed as to appeal to the whole population, irrespective of age, simply gets me.

Up is no different. No, actually, it is different. The 3D effects are simply brilliant, the graphics are superb, and the adult-viewer-destined nods and winks along the way are very subtly but very surely sprinkled throughout.

It was a very pleasurable afternoon, made all the more pleasurable by the hug I received from and gave back to Boo when we parted ways – Ok, hugs exchanged with Hammie as well, of course! I had started the day by shopping in Dundrum for a pair of blue shoes, to go with one of my “work” suits, had ended up finding them,… plus a pair of mauve shoes,… plus a mauve bag – mauve sounds so much posher than purple, doesn’t it? And I ended the day going back into the shops and buying a cream jacket… Oh my poor credit card was overactive on Saturday!

What has this got to do with Racism et al. as per the (sub) title above, I hear you ask. Well now, let me explain.

On Friday, I was having one of those coffee-break chitchats one has with colleagues on a regular basis. You know the type:
- So, anything planed for the weekend?
- Couple of things. But what I am really looking forward to is seeing UP.
- UP?
- Yeah, you know the film coming out this weekend.
- ????
- Look here (pointing to a newspaper on the table, open on the very page showing an ad for the film), it’s a new animation film, just out, and it’s supposed to be brilliant.
- …But, it’s a kids movie…?
- If you want to call it that. But I’m really looking forward to it!
- And you’re bringing a kid to it?
- Actually, I am accompanying a friend and her son.
- And you don’t mind going to a kids’ movie?
- Mind? What do you mean mind? I love them…
The look on my colleague’s face had gone from surprise, to scepticism, to pure and simple incomprehension. So I ploughed in:
- Animation films can truly be Art. Some of what comes out sometimes borders on pure genius. Take Wall-E…
- Wall-what?
- Wall-E. Surely you have heard of Wall-E!
- ???
- Well, I did not see Wall-E in the cinema, unfortunately. But I was given the DVD by my son…
- He is an adult, right?
- Right! And when he gave it to me, he said it contained the best non-dialogue 20 minutes to be shown on film in years… and he was right, it’s simply, simply, brilliant!

Look of total blankness on my colleague’s face. He just simply did not know what I was talking about. And I thought “Pity the kids he might have one day!”

So, to drive the final stake into the heart of the matter, I simply said before taking up my mug and going back into the office:
- UP is made by the same people who made Monster Inc. If it’s half as good, I will enjoy it. Because you don’t need to be a kid to enjoy animation films. They are just simply for everyone.


This conversation got me thinking, as it echoed several conversations I had in the last few months. And all have a common theme: Attitudes to labels.


In this first part of my reflection, three of these labels just up at me, Ageism, Racism, and Abilitism – I made up that last one, and quite like! ;-)


As I see it, putting forward the idea that, just because we are adults, we are not supposed to enjoy so called “kiddies” movies, is in my opinion a clear example of Ageism.

Here is another one: Only a few days before, I found myself drawn into a discussion where one person was arguing that some women should watch what they wear, because, let’s face it, they are ridiculous, like sheep trying to pass off as lamb. I listened patiently while (younger) women around me argued that age has nothing to do with what we wear, that the important thing is that the cloths we wear suit us and we feel comfortable in them. Notably, the only man at the table kept very, oh so very quite! I eventually had to butt in and asked exactly what she was referring to. She hesitated and eventually she said could not understand how someone who is a mother with teenage daughters could go in those “trendy” shops for cloths for herself, and dare to wear them! I answered that I am not sure what “trendy” shops she was referring to, but I am in my early 50’s, a mother AND grandmother, and I shop in River Island, Next, Sasha, etc… and somehow I don’t think I look like a sheep in lamb’s clothing. At least I would hope to be told if that was the case. As all eyes fixed on the poor woman (I felt for her then), she just shrugged her shoulders and kept chewing on her lunch. I wonder what she will make of my new mauve shoes?

Or the blue ones?

(Could not resist it, had to show them!)

Ageism, or the perception that age means dressing a particular way.




In the same vein, I have been at the receiving end of Racism during my time on Ireland. In fairness, the incidents in question were not numerous. But they each left a deep mark, mainly because they came in series, and from people I became close to, or had to work closely with. In the first one, I eventually had to threaten to involve the Managing Director and put through a formal complaint, as the remarks had gone too far. This was a long time ago, at a time when “immigration” was a fairly new concept in Ireland. But being called “froggy” and told on a daily basis to go back “home” was not pleasant. Arguments that over the years my taxes had paid for this young arrogant pup’s education and enabled him to become an engineer did not have any weight. The threat did, fortunately.

Another incident came from someone I had come to call a friend. I held this person’s opinion quite high, and as a result had increasingly started doubting my judgment on some things as, over time, she seemed to colour my views and how they were perceived by others in an increasingly negative light. My eyes opened, painfully, when one day she eventually said: “you know, people like X and Y say that they appreciate your view points and tell you that you have good ideas, but at the end of the day, what they really mean is that they are quite taken by the way you can express yourself so clearly in English. After all, it’s not your mother tongue!”… Needless to say, that was that of this “friendship”. Strangely, to this day, I am still on excellent terms with X and Y, and do consider them amongst my closest friends!...


What about Abilitism?

Let me give you two examples: during a conversation sometime ago, where someone was describing some new skill her baby had just discovered, and I was exchanging similar prowess about Cathal (as I do, so proudly, worst than any new parent with his or her new child! Grandparents can be fierce in this way), saying he does this but not that yet. The third person present piped in: “Ah but sure, that is to be expected, he is delayed!”

I felt myself getting very angry: what right has anyone, who has not met Cathal, who knows of him only what I tell them, to pass such judgment on his abilities, or lack of, just because of his diagnosis of DS?

But this person surprised me even more since: during a discussion centering on the lack of facilities for Speech and Language Therapy, the question was asked by the same person:
- Why does Cathal need Speech and Language Therapy? He is deaf?
- No, he is not.

Ok, to be honest, when I first heard of signing and Lámh, I did ask Cathal’s Mammy why it was necessary since we knew that he could hear – in my defence, it was only a few months after his birth and I was still catching up on basic information. So one could understand the reaction? Please read on. Because what came next is priceless:

- So, if he is not deaf, why does he need S&L therapy? Has he a cleft palate?

… And this from a trained nurse… who worked for years in Ireland’s leading paediatric hospital (in Crumlin)… in the Cardiac wards where half the patients have DS … in the cardiac ICU where a lot of the patients have DS!

Abilitism in full swing!

This is for part 1 of this post. Centering on what I have witnessed in others.

But what about what I witnessed in myself? See you in Part 2!

Independent Living

We all take independent living for granted. At least where we ourselves are concerned. We grow up thinking that “when we are big” we will have our own home, a job, drive a car, have our own family. This is the natural order of things, and we usually do not see any other way for our lives to be.

Shortly after Cathal was born I became acutely aware that he might not achieve this independence of living. One part of me refused to think that he would not. But the other part of me was all too conscious that the odds were not favourably stacked towards full independence. To this effect, and after discussing it with both his mammy and his uncle, I took some measures so that, when eventually I depart (may it be in no less than half a century away…!) at least something will be there for Cathal to insure some kind of financial independence. But that is in the long term.

What about the shorter term? What about in say 15 or 20 years from now? Very honestly, I do not think much about this. I am too busy enjoying myself with him, soaking up the joys and the fun he is offering me every time I am with him. Yet there is this thing about Abilities and Potential, isn’t there? And how he can be helped along the way, every day, to reach those that are his, and his alone.


And the possible result? Two examples have crossed my path this week - thanks in part to Blogland, and Mel in NZ, and thanks in part to DS Ireland Forum.

Check out “The Specials”, an internet mini reality-TV series about 5 young people sharing a house in Brighton, UK. The fact that they all have a learning disability is only a by-the-way. It is funny, happy, sad, heart-warming, but above all else it is honest. I think my favourite is Sam, I love his energy and his sense of fun! He is my kind of person.

Be sure to watch all episodes in order – as of today, they are 4 of them, all about 10-12 minutes long. Grab yourself a cuppa of your favourite brew, sit back and enjoy.

If this is not independent living (even with their carers around them), what is?




And check out Kelly from New Zealand, a woman leading the kind of life we should expect for anyone. So simple!



I am slowly but very surely learning that Disability is very much a relative concept! And who said Independent Living was not for everyone?