27 September 2009

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?

13 September 2009

Hi hi hi!

Cathal’s Mammy and the Dad were very busy this Saturday, with a social occasion that required their absence from home until late that night. So Cathal and I decided to have some fun of our own.
La Maman et le Papa de Cathal étaient très occupés hier samedi, avec un évènement entre amis qui a signifié leur absence de chez eux jusqu’à tard dans la nuit. Alors Cathal et moi-même avons décidé de nous amuser aussi.

The best were the swings in the afternoon, Cathal tried them all. So cool!
Le mieux était les balançoires dans l’après-midi. Cathal les a toutes essayées. Trop cool !

But that was hard work, and Cathal fell asleep on the way back.
Mais c’était très fatiguant, et Cathal s’est endormi en revenant.

And when he woke up, his buggy had transformed into a “double-decker”, someone having found refuge in the basket under the seat.
Et quand il s’est réveillé sa poussette était devenue « à l’impériale », quelqu’un ayant trouvé refuge dans le panier sous le siège.

“Hey ! who’s that ?”
« Ben, c’est qui? »

“It’s Marvin my new cat!”
« C’est Marvin mon nouveau chat! »

Cathal must have had a great time, as he gave me one of his most beautiful smiles when I got him up this morning (the Mammy and the Dad where still asleep after a Long Night… !). That totally made up for the Very Early hour.
Cathal a du bien s’amuser, car il m’a donné un de ses plus beaux sourires quand je l’ai levé ce matin (la Maman et le Papa étaient encore endormis après une Longue Nuit … !). Cela a complètement compenser pour une heure Très Matinale.

And when I left to go home, Cathal did something he never did before : he was in his Mammy’s arms as I waved goodbye, but threw himself into mine, and gave me the biggest and strongest of all hugs. When I gave him back to his Mammy, he had a very sad little face, the bottom lip was pouting out as if about to cry. He refused to understand he would see me again in just a few days…. How much I love my Little Prince!
Et quand je l’ai quitté pour rentrer chez moi, Cathal a fait quelque chose qu’il n'avait jamais fait avant: il était dans les bras de sa Maman alors que je faisais au revoir de la main, mais il s’est jeté dans mes bras, et m’a donné le plus gros et le plus fort de tous les câlins. Quand je l’ai rendu à sa Maman, son petit visage était tout triste, la lèvre inférieure poussée en avant comme s’il allait pleurer. Il a refusé de comprendre qu’il va me revoir dans quelques jours… Comme j’aime mon Petit Prince !

Cathal is now 18 months old since last Friday, and it is 6 months since his open heart surgery. Doesn’t he look well?
Cathal a maintenant 18 mois depuis vendredi dernier, et cela fait 6 mois depuis son opération à cœur ouvert. N’est-il pas en pleine forme


08 September 2009

Changing Attitudes

This post is more than anything a personal reflection as I take stock of yet another change in me. Putting emotions and reactions into words and sentences helps me make sense of things, and this is one of those instances. I need to be brutally honest, and look at “me” in all its non-glory to understand what has happened here. So if anyone reading this is into much lighter stuff, or does not feel like delving into Nan P’s self psycho-analysis (or what you may care to call it), I’ll understand if you skip to another blog right now.

And if my choice of words seems insensitive and offends anyone, please bear in mind that it is not intentional, as I am only trying to express very deep and complex feelings here.

I like being in control. In fact, I am a “little bit” of a control freak (and that is putting it mildly!). Just ask Cathal’s Mammy, or Cathal’s Uncle. Over the years I have learnt to let go of both my children, but it has not been easy, and sometimes it is very much still only on-the-surface behaviour. Hopefully, slowly but surely, I get there. I don’t know if it comes from growing up for the first 12 years of my life as an only child, and thus being at the controlling centre of my parents’ circle. I just know I hate not being in control. In any sense. For example, I have never taken drugs, simply because I am terrified of not being in the driving seat of my behaviour, my words, my thoughts. As I was growing up, and until my early teens, I used to suffer from fainting spells on a regular basis (I was finally diagnosed as being hypoglycaemic, e.g. low blood glucose levels, which I thankfully have learn to control very well; the last time I fainted was about 27 years ago, but I was pregnant at the time, so that does not count!). I vividly remember the feeling of loss of control of my body, my mind telling me “here we go again!” and not being able to do anything about it, to tell anyone. I had not learnt to recognise the tell-tale signs then, and being semi-conscious as I could feel my dad or my mum carrying me to the nearest couch or bed before the total darkness took over was truly frightening.

It turns out that as a result I have never been able to get drunk: one glass is fine, two and I am nicely tipsy, the third sends me straight to sleep thanks to the sudden overload of sugar in my body. I sound boring, don’t I? But because of this, I find it very hard to be in the presence of people who might be (even mildly) stoned or drunk. I am still in control, and they are not, and that frightens me.

Also I think I operate on two very strong levels: an emotional one (anyone who has met me face-to-face will probably attest that I easily wear my feelings on my sleeve) and a logical one. I like things to “make sense”. As a result, I find it hard dealing with people whose behaviour may be described as erratic, simply because I can’t make sense of it. I then get very uncomfortable, my frame of reference having vanished, and I become at a total loss as to what I should do next.

Now for the brutal honesty: I think I have looked upon “intellectual disability” in the same vein. Again in my teenage years, I used to help my dad every Sunday morning with a group of old people, some of them whose mind was not “all there”. I found myself very awkward around them. I have not had much experience of contact with people with learning difficulties until now, and I must say, deep down, it kind of scared me. The not understanding the other person, why they would behave in the illogical way they do, if they would understand what I’d say to them, what I can say to them, if they are “in control” and can’t show it, or are actually and truly not in control and what I am supposed to do with that. A raft of stupid questions, but they all crossed my mind at one stage or the other over the years. So, yes, “intellectual disability” unnerved me, even scared me.

Strangely, these thoughts did not in anyway cross my mind following Cathal’s diagnosis. It’s as if Cathal has never been in any way part of this picture. Cathal is Cathal, that’s it. I do worry about the future for him, of course, but that’s it. These feelings of awkwardness and discomfort, all these questions, never came in. And as I think of it now, neither when I met any of his little friends – and I have posted before how much I enjoy meeting them! Is it simply because they are so young, and we never expect any special type of behaviour from young children? It is that, with babies and toddlers, all behaviours are “normal”, are expected? I am not sure. The fact is, my issue with “intellectual disability behaviour” – I can’t find another, better, label to put on it – is non-existent as far as Cathal is concerned.

Yet – Brutal Honesty, step forward again please – going to the World DS Congress, I had some apprehensions, especially about my own reactions toward the people I was going to meet there. Actually, a lot of apprehension, which brought me to practice the Ostrich Strategy for the few weeks leading up to it. You know, stick your head in, ignore what is bothering you, and hope for the best.

Well, the best happened, as soon as I stepped inside the entrance to collect my badge and bits and pieces: these apprehensions totally disappeared. Gone! The rest, as they say, is history, as per a previous post.

So much happened over those few days of the Congress, and then I went off on a week’s holiday, so much so that I did not realise the extent of my journey and of my changed attitudes until last Friday. I have hinted a few times on this blog that my work takes me around various hospitals on a regular basis. Last Friday, I happened to be part of a group visiting Peamount Hospital, near Dublin. One of the areas that Peamount is known for is the number of long term patients (they call them “clients” which I think is nice) with intellectual disability. Some of them have lived there most of their lives. Thankfully it is an aging population, showing how things have improved and are improving over generations so that more and more people have a chance towards a community-integrated life. And these are not empty words, I do mean “thankfully” because I do believe this is the way forward.

I have been in Peamount several times before, but this was the first time I was taken around almost every nook and cranny of the place, and visited all the wards and supervised living bungalows. As a group, we were “warned” that some clients might be over friendly, but not to worry, the staff is always close by. I do not know if it is because I was so focussed on the purpose of the visit, but I just did not “think” ahead, no fear, no apprehension. In the first and second place we visited, some clients approached us, said hello, we all said hello back. All very natural. Then we entered the third ward.

At the door was this gentle looking little old lady who nodded as we went in, and then joined our group, taking her place next to me as we walked around. She followed us in various rooms without making a sound. And when we stopped to examine some equipment, I felt my left hand being gently taken in a silky soft and warm little hand. I looked at her. She was looking at me and smiling. Then she turned her attention to the person who was then speaking and ignored me totally for the rest of the visit, yet still holding my hand all along, as we continued moving through the building. The strange thing, what totally floored me, was how natural this felt, how utterly normal. So human to seek, to give and to receive this physical contact. I was also acutely aware at that time of a sense of peace and well-being which is hard to describe.

I am not too sure of the conversation exchanged during the visit of this particular ward, but it is so irrelevant. What this lovely lady gave me is far more valuable. When we made our way back toward the exit, she started to pull on my hand as if to take me in the other direction. One nurse who had been in the background all along (and had thankfully and tactfully not intervened before this) started to move towards me. But I told her it was ok. You see, this lady and myself were in control, together. I turned to her, told her I was sorry but I could not stay, I had to go away, but it was lovely having met her, and I hoped that she would have a very nice day. She looked at my face, released my hand, and took a step back. And as I moved towards the front door saying goodbye to her, she smiled.

Now! How is that for not being in control? How is that for illogical behaviour? How is that for unfounded apprehensions, fears, and stupid thinking based on ignorance? Unfortunately I do not know this lady’s name, but she has made a great impression on me, because she has enabled me to see the road I have travelled lately. And she has given my mind a sense of peace I still feel. I would even dare call this a spiritual encounter.

Loss or absence of “control” is so relative!

06 September 2009

Sardinia Unspoiled

Holidays are over, I came back very late last Monday night, full of heat, and sun, and nice food, smells and images to last me quite a while. Landing in Dublin to a temperature of 13 degrees (Celsius) after anything from 36 to 40 in the afternoon shade on the coast and just under 30 in the mountains was to be expected, but still a shock to the body! I do love heat, and I still think that, though I love living in Ireland, it could be hotter… But then it wouldn’t be Ireland, would it?

This is a quick post on Sardinia, a Mediterranean island that does deserve to be visited. My main impression is that, generally speaking, it is very unspoiled. The North West coast I travelled on and the Northern interior I explored boast some incredible scenery. Hard to do justice to such an intricate place in just one week (I did not have time to venture into what is supposed to be the most stunning mountainous parts according to the Lonely Planet guidebook), and then just a short post! I just want to state a few things here:

- We all have a responsibility to sustain and protect our planet, and the beauties it compasses. I have been privileged to witness a few in the last few years, and though I am all too aware that my carbon footprint goes quite high when I fly off to these places, I am so grateful to be allowed to experience such beauties.

- On my last day there, I made a last minute detour of about 80km to take what turned out to be the second most beautiful and scenic coastal drive I have ever been on, from Bosa to Alghero (my no. 1 favourite is the Great Ocean Road west of Melbourne, Australia).

- The sea so clear and warm. The countryside so burn in this late summer. The mountains so rugged and wild. Little lakes hidden away among the pine forests or the cork-oak forest (and I do mean cork tree, the bark stripped to make… corks!)

- I saw the famous and very unique wild Albino donkeys of the Parco Nazionale dell’Asinara (asinara is the Italian for donkey… dictionaries are great!) as well as eagles and pelegrine falcons in full flight, and met a wild boar who was quietly crossing the road as I was carefully driving down the top of a mountain – my driving skills pushed to the ultimate test on Monti Limbara, with a 10% incline over 9 km, hairpins all the way and no safety barrier for the last third of the climb… and back down! But what a view at the top! Breath-taking.
- The food, the food, the incredible food! I tried every thing, though I can say I do not particularly like baby octopus… but I tried. Roasted Suckling Pig is typical of Sardinia and is just delicious. So is Seadas, a dessert made of a light deep-fried pastry wrapped aroung some soft and mild cheese, served hot and totally covered with honey… aaaah….! As for fish and prawns, I gorged on them, and I am not ashamed to say it!

- The history of the island is so rich, and I was lucky enough to find and visit such sights as a 5,000 years old Necropolis (I was very moved by the carvings over the doors, evidence of faith and hope of a deeply religious people), two of the most subtential Nuraghe sites on the island, dating from about 3,500 years ago, one being the Nuraghe village of Palmavera, made up of the remains of a main tower, of an assembly hall, and of some 50 dwellings (near Alghero if you fly there); the other was inland near Tempio, the magnificent tower of Nuraghe Maiori, shouldering on a rock in the middle of a cork forest. Just to put things into perspective, there are still over 7,000 Nuraghe towers scattered around the island. Then they were the little churches and chapels dotting the countryside. I happened on one by chance, driving by slowing enough to see the door was opened: I stopped, went in, was taken aback by the sheer beauty of the simple architecture, only to realise as I was coming out that a date was inscribed in the stone over the door: MII. Yes this is over 1,000 years old! How many people stop and go in? I also spend an all too short evening walking the twisty streets of the old city of Alghero, ending with dinner on the old sea-walls while watching the sun setting over the bay.

As for my non existent Italian, a combination of English, French and the help of my dictionary got me by. Also I was fortunate to meet Paola during my day trip to the natural reserve of Isola Dell’Asinara. Paola is an English teacher and was a god-sent, she spent the day translating for me the guide’s information and gave me such an insight into this wonderful place.

God! How beautiful is our planet! Here is just but a taste if you are ever tempted to go there. And let me know, I would gladly join you there!

Cathal loves this photo. When I explained they were albino donkeys, he looked at me with a very serious face and said his famous "a dddd!" :-)

Taken by the side of a mountain road, in the heat of the afternoon. Even when the sun seems to burn everything, delicate beauty emerges...

2 views from the top of Monti Limbara:

A cork oak tree:

The interior of the 1,000 year old chapel called (according to the map) San Pietro di Ruda. It is at least 10km from any village!

A 12th century church, Nostra Signora di Castro, again in the middle of nowhere. I was so taken by the colour of the stones, each one is a different shade. The inside is equally beautiful.

One of the many views on the last coastal drive:

So, what do you think? Isn't it tempting?