30 July 2010

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.

21 July 2010

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!

15 July 2010

“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 !

04 July 2010

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” ;-)