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.

Can we? ... Of course we can!

Or to borrow a well worn slogan: “YES WE CAN!”


We can do anything we set out to do.

We can develop our abilities to their very limit if we put our minds and hearts to it.

We can change our view of the world to become more inclusive.

We can take little steps every day, and when we look back we will see that we have travelled thousands of miles.

The previous post on this blog was my 100th. A little milestone. One hundred posts on a journey of discovery. Because when this little old granny – sorry but I need to rephrase this to “this little young granny”. Ah, feels much better! – started this blog, she had already realised that all she thought she knew of life was actually very little, and very much one-sided. But her little blog pushed open a door barely ajar before this, and introduced her into a very different world. Not only the world of Down Syndrome, but other worlds, other challenges, other joys.

For example, one day this little young granny received an email from a fellow blogger who shall not remain nameless (Hello Hammie) asking her if she would like to join a working group for an organisation called Kanchi. After a few diary mishaps, she finally got herself free enough to agree and meet with them – going by a very simple principle: if she can do anything at all that may help Cathal directly or indirectly, short term or long term, it is worth doing. On this occasion, and on any othere one after this, she was welcomed with open arms – literally, so many genuine hugs from people she had never met before, she just loved it!

But she kept asking (and still does sometimes): “Are you sure you want me here? Are you sure I qualify?”

Because this working group is made up of people with all sorts of disabilities, or people closely associated with people with all sorts of disabilities. And let’s face it, even though she does not like this phrase, it’s true that her only qualification to this group is the fact that she is “only” the grandmother of a child with Down Syndrome...

Ever since joining this group, her eyes have opened up to aspects of life she had barely heard about before. She has been more enriched since last year than she would have been with several university degrees. For one thing, never before had she sat down for breakfast with three lovely gentlemen who all happened to be blind, and she was in absolute awe at how they navigated through their Full Irish – a big fry up of bacon, eggs, sausages, black pudding, white pudding, mushrooms, tomatoes and beans - in other words: The Works! ;-)

And all this education for the price of only a few hours every so often at weekends, to discuss and tease out the various projects the organisation is involved in.

You can read more about Kanchi here, but let me just tell you that this organisation was founded 10 years ago by visually impaired social entrepreneur Caroline Casey. It works to change the social landscape for people with disabilities by, among other things, targeting the big bad world of business to change their attitudes toward disabilities, and showing them that integration is key to a successful business. Among other projects, Kanchi launched the O2 Ability Awards five years ago, a competition for companies and other organisations to bring themselves up to certain Ability Integration standards, and then have a chance to win an award for their efforts. This concept is catching on, as Kanchi announced recently that the Ability Awards are moving into Spain this year, sponsored by O2’s mothership, Telefonica.

RTE (Irish television) is also part of the initiative, and you can see here the first of two programmes transmitted last Thursday. The Awards Ceremony is on tomorrow evening 12th May and will be shown on RTE1 the following night (Thursday 13th May). It will be presented by our own-grown TV personality Ryan Tubridy and Kanchi founder Caroline Casey, and will have such special guests as none other than former Irish President and UN High Commissioner for Human Rights Mary Robinson.

But watch out carefully in the background, because this little young granny has also been asked to attend, just to cheer on the winners… Her little black dress is all ready, and she just can’t wait...

“The greatest disability is attitude. To change the way society behaves we have to change the way it thinks.”

(borrowed from the Kanchi website)

Normal, Average, and Foxy Business

Or Coming out - Epilogue


February 2010 has started much milder than the end of 2009 and January 2010. I woke up yesterday morning to the sight of a pheasant going about his pheasanty business on the green that my bedroom window overlooks. Spring may be coming.

I often see pheasants there on weekend mornings, and more often than not I actually see several of them together, the most was last spring when seven of them (hens and cocks) were inspecting the green for over an hour. This is one reason I opted to live on the edge of a village rather than in the Big City: I looking at the spread of miles and miles of countryside from my sitting room, I like the sight of greenery, of fields, of trees as I commute morning and evening – during at least 8 months of the year, as in the dead of winter leaving and returning in the dark is unfortunately my lot.

But January did not want to let go of its reputation for coldest month ever. The last weekend of it offered nights with a sharpness that reminded us Winter was not gone or dead and buried yet! Thus Sunday morning found my village encased in a thick crust of frost that did not melt until well after noon.

Though I do not like mornings, I love weekend mornings, when I can laze in bed with a book and a large pot of coffee, leisurely feasting on both. So there I was mid-morning last Sunday when, as I refilled my jumbo cup, I looked out the window to check on the frost, and I saw this:

He took his time, patrolling the green in a seemingly systematic way, probably picking up scents, trails, and proof of various prey’s activities.


Being in the country, this should not have surprised me. Yet it did: though as I said I have often seen pheasants in this same spot, this is the first time I have witnessed a fox there. Because, contrary to what we may think, foxes do not particularly like the country. They much prefer cities. In fact the highest concentration of fox population in Ireland is in Dublin. In particular they are found in the greatest numbers in very specific areas of the city, where there is plenty of food to scavenge and lots of large gardens with hedges and bushes to hide in.

So what we think as “normal” (e.g. foxes live in the countryside, there is no wildlife in the cities) is very much a false premise. How many such thoughts of Normality are erroneous? Do we confuse “Normal” with “Expected”, or do we confuse “Normal” with “Average”?

Some months ago I found myself spending some time with a group of people with various types of disabilities, and we came to discuss the perception of Disability, and then moved on to what is a “normal” person. One man there reported on a simple study that for him had put a lot of things into perspective. I do not have all the precise details of this study, nor who carried it out, etc... So what follows does not purport to be highly scientific. However what I remember is this: the study took 100 “normal” people, e.g. representing a cross-section of society and not claiming to have any disability. They were asked 7 simple questions concerning daily tasks, such as for example “Can you read or drive without the assistance of aids such as glasses or contact lenses?” – meaning: do you have “normal” vision? Anyone who answered NO to any one of the seven questions was directed to one corner of the room, the others who answered YES to all seven questions were sent to another corner. Once all 100 people were thus questioned, the YES corner had an impressive total of... two.

Just two people were “normal”, the other 98 needed the aid or assistance of an implement or a devise of some sort to carrying out at least one daily task we all take for granted. This truly puts the notion of “normality” into perspective. And it brought me to wonder if what we call “normal” shouldn’t be redefined as “average”. Take vision: if we expect most people to have “normal” vision: e.g. to see near and far without the need for any assistance; If on average 50% of people can read without glasses, and if on average 50% of people can drive without them, how many require glasses in neither case? Logically, it could well be 25%. This minority becomes the norm. Our society is constructed on our perception of The Norm, on averages that we conveniently forget to combine.

The over-use of “the average person” has brought us such spread of aberrations as:
- exam marking-schemes (retaining zillions of one-liner facts and figures and regurgitating them at lighting writing-speed can favour only one type of student),
- fashion ideals (in reality, how many people look with those models?),
- slip-screen TV programmes - ask someone who is dyslexic to follow a news report while simultaneously reading the name of the interviewee with all his credentials in one corner of the screen and important facts bearing value to the interview at the bottom of it, both going at different speeds, and his or her reaction you may help you to understand what I am talking about.

I never considered myself “abnormal”. However I no longer consider myself “normal”. I see me as me. I still would not advertise in a working environment my reading / writing / sequencing / retaining-information peculiarities, but I have been much more at ease with them in the last year or so. And when it comes down to it, Dyslexia is only one aspect, along with other facets of myself, of what makes me... me ;-)

As Elbog mentioned in his comment to my last post, Cathal’s diagnostic has certainly shifted my perceptive on what I may view as The Norm, to an extent that I often stop myself, as I am about to utter what I would have previously thought of as the truth, and soften my thought by rephrasing it. In fact, the word “normal” is on the endangered-words list of my vocabulary. When trying to “educate” people around me I never say “normal children do this, or have that, where as children with DS...” Instead I say “Children with DS tend to... and children who do not have DS tend to...”


Shift.

Like foxes thriving in cities.

Coming Out? Chapter Two

I recently learnt that John Chambers, CEO of Cisco, e.g. one of the world top business people, belongs to my club as me, and has apparently been very open about it. This got me thinking. A little research later, and I realised that a large number of business people are also members, such as, but to name a few, Richard Branson (of the Virgin Airline and Virgin TV fame), the Naked Chef himself Jamie Oliver, and Ingvar Kamprad (who?... actually, he is the founder of Ikea). In short, people we would consider to be successful.

But this club is not only for business people. “Great” thinkers, writers and painters can also be found: Hans Christian Anderson, Leonardo Da Vinci, Pablo Picasso. Quite a lot of artists and media people of all types as well – ok, I’ll drop names again, all in a tumble: Anthony Hopkins, John Irving, John de Lancie, Cher, Whoopi Goldberg, Noel Gallagher, Jay Leno, Ozzy Osbourne, Keanu Reeves, Guy Ritchie. And sports people as well, for example Jackie Stewart (had to slip in someone connected with Formula One here, could not resist). And I remember hearing a couple of years ago an interview with one of our Boyz, namely Shane Lynch, where he said he is one of us too.

I am not saying that I feel proud to be associated with every one of these people, some I would certainly not describe myself as a fan of. However this list is interesting as it shows that our club encompasses all walks of life, all levels of intellect, both genders, and overall between 5 to 7% of the population. Our club is Dyslexia.



The Dyslexia Association of Ireland defines dyslexia as follows:

Dyslexia is manifested in a continuum of specific learning difficulties related to the acquisition of basic skills in reading, spelling and/or writing, such difficulties being unexplained in relation to an individual's other abilities and educational experiences. Dyslexia can be described at the neurological, cognitive and behavioural levels. It is typically characterised by inefficient information processing, including difficulties in phonological processing, working memory, rapid naming and automaticity of basic skills. Difficulties in organisation, sequencing and motor skills may also be present.


Another definition I found states:

Specific developmental dyslexia is a disorder manifested by difficulty learning to read despite conventional instruction, adequate intelligence, and adequate sociocultural opportunity... Dyslexia is diagnosed in people of all levels of intelligence.



So how did it manifest itself for me?

As a child learning to read and write, the first problem I remember (I may have encountered others before this, but I simply do not remember) was not understanding why my teacher kept giving out to me while pointing out mistakes in my spelling: I simply could not see them. Even though I knew the difference between b and d, between m and n, between p and q, when I read them as part of a printed word, each pair got all mixed up when it came to writing them down, and then reading back what I had written. I simply could not see the difference. Similarly, I could correctly write a c or an s, a g or a j, but could not “speak” the difference within each pair when spelling out aloud – this is still with me now, I always have to stop and think; the fact that the sounds of the letters g and j are inverted between English and French makes it even harder for me. The other thing that caused me major difficulties was reading aloud. Even though I remember learning to read fairly quickly, it was fine as long as it was “in my head”. This to a point that by the age of 8 I used to go down to the public library several times a week, and take out the maximum number of books allowed, all the while reading my own books at home over and over again. But once asked to do read aloud, stumbling or coming up with different words than those on paper were the norm. I remember my frustration as I knew I could read but could not prove it, and the sense of ridicule as I was forced to struggle in front of the class in school.

Apart from my appallingly bad hand writing (described as “spider-feet” while in primary school, and it is still pretty awful), my spelling remained incredibly messy, and uneven; by this I mean that I would rarely repeat the same mistake twice, it just seemed to strike at random. While I was growing up, the French education system had a great scoring system for spelling: the children were given a dictation, marked over 20 points, and either one point or half a point was deducted for every mistake, depending on its “severity” (I kid you not!). I remember my mother being told by a teacher, in front of me – I was by then in secondary school so probably about 11 or 12 – that I had achieved her overall record of minus 25 over 20! How about that for confidence-building? Would not consistently reaching zero have been enough to show there was a problem?

Retaining information, learning texts by heart, or dates, or names, or simply learning my “tables” (multiplication, etc...) were particularly difficult – there goes the sequencing bit. The written and the oral did not connect. A link was missing somewhere. When I was 12 or 13 years old, I was finally diagnosed and directed toward a lovely woman who taught me to read, to write, to spell, to manage numbers, from scratch. She gave me little tricks, so simple yet so valuable that I have totally integrated them. She did her job so well that I could not actually explain now what most of these tricks are or how they work, because they have become part of my way of thinking and of handling written language. What I know is that reading aloud has been, and still is, a major problem, especially if I have not seen the text before – and by this I mean not seen EVER, or not seen in the last 10 minutes, depending on the day. This can be a great source of anxiety, striking at the most unexpected time. Yet I know that, if I slow down, if I breathe in and out as I read, if I focus on each word instead of the whole sentence, I’ll do it, and no one will ever know. And if I trip, well, I trip and that is that!

The other thing is that the advent of computers, word processors, spell-check, etc… has greatly helped my writing. I am not sure how or why, but I know that I find it much easier to type than to write long-hand, and that it easier for me to spot where things go wrong when it’s on a screen or a printout than my long hand. To a point where I came to wonder if I was “still” dyslexic. Until I took a very simple (even simplistic) little test I found on the Dyslexia Association of Ireland website, a test directed at adults. Here it is, with my answers:


“The following is a list of questions for any adult who thinks she/he may be dyslexic.

• Do you dislike reading aloud? YES, YES, YES.
• Is reading new material difficult? YES.
• Does it take you a long time to read a book? YES, though I do read a lot.
• Do you sometimes pronounce words incorrectly? YES, YES, YES. In both languages!
• Do you have problems with spelling? YES, though it’s not as bad for me in English as it is in French. But when one word is similar in both languages but not quite, I struggle, big time, and can end up with a new word combining both spellings.
• Did you have difficulty at school and did you do less well in written exams than you feel you should have? OH YES, oral exams were always so much easier... as long as I did not have to read aloud, of course!
• Do you find it hard to write letters, reports, or even to take phone messages clearly? LETTERS AND REPORTS NO, BUT PHONE MESSAGES: YES! If given a name or phone number, I always need to get the person to slow down, I repeat the letters or digits as they are given to me, to buy me time to process (one of my little tricks, apparently). But if someone leaves a message on my voice mail with a number, I have found myself listening 6, 7 or even 8 times to ensure I have it, and have it right, because I can take down only a couple of digits at a time… bloody nuisance!
• Do you have problems with sentence construction and punctuation? NO! Hmmm! ;-)
• Do you get phone numbers wrong? YES, YES, YES.
• Do you confuse 'left' and 'right'? YES, AND TUESDAY WITH THURSDAY, AND WEDNESDAY WITH FRIDAY, ETC… (Different days in French!)
• Is your handwriting hard to read? That is an understatement. If I do not focus on my writing, not only others can’t read me, but I can barely read myself at times!
• Do you find it hard to see the mistakes you have made in written work? OH YES, especially if hand-written!
• Do you have 'good' days and 'bad' days? DEFINITELY! Some days are a real struggle. And tiredness makes it worse because of lack of focus.
• Do you find it hard to remember things in sequence? YES!
• Do you find it hard to remember new facts, names, etc? YES, YES, YES.
• Do you get confused with times and dates? BIG TIME! ;-)
• Did you find it hard to learn by 'ordinary' teaching methods? NOT SURE WHAT IS MEANT HERE. What I know is that I must write down EVERY THING, every scrap of information that I know I need to retain. Then I know where I have filed the document it’s rewritten on (hard or soft copy), and can retrieve it easily when needed, again and again until it sinks in – another little trick!
• Do you forget quickly rather than learn slowly? ABSOLUTELY! This is probably why I could never cram for any exam I took, and God knows I sat quite a few over the years! Learning has always been a long haul process, with a lot of repetition, a lot of going over things, until things do sink in and stay there. And I am taking about facts to be learnt and retained here, rather than logical processes or cause-and-consequence type of information (these have never been a problem). Last minute of scanning through something has always been useless, as the information is gone almost as soon as it came in. To this day, I prepare for important things like meetings, presentations, etc... as far in advance as I can, to go back over as much as possible.
• Does someone else in your family have similar learning problems? APPARENTLY YES.

Many people will say yes to some of these questions. Some people will say yes to many of them. Counting up, my answers are “YES” to 18 out of 19 questions. I am not saying this is an absolute diagnostic, but… I would call it confirmation of an earlier one. Any doubt I may have harboured has been dispelled, I “still” am!



I have generally not publicised my dyslexia. Since my bag of tricks has enabled me to function pretty well for years, there is no need to highlight it. I get by very well without revealing it, especially in a work situation. It is probably also due to the fact that I feel I would appear “different”, that people may not understand that I can do every thing I am supposed to do, that it does not “handicap” me. Down to the point, I feel that the perception others have of me would change if they knew. In short, I am probably prejudiced against myself.

Learning of the numerous members of my club as I listed above, some of whom I do truly admire (but I won’t name them, that would be telling too much for today!), showed me it is one diagnostic, like another, it does not reflect on me as a person, or on what I can or cannot do. So reading and spelling may be a difficulty for me? This does not stop me from having a love of words, a love of the written form of language. So remembering names and numbers, facts and figures may cause me a little hassle? This does not stop me from being pretty good at what I do, no matter what it is, if I may say so myself (blowing my own trumpet, etc...). So reading aloud is not my forte? Ah, but a lot of other things are...! The big question is: How do people see Dyslexia? How would an employer consider a prospective employee if it is written on the CV as one of the “talents” or “achievements”? Because I consider my adapting to a world so dominated by the written word, and adapting so well, as one of my biggest achievements. Do we talk enough about it, dispel the myths? I am very conscious that my own silence has been contributing to maintaining them all these years.

Having said this, I find reassuring the fact that it is a spectrum, it confirms they are variations between people, and even within me from day to day. Strangely enough, doing the little test above, researching Dyslexia in the last while, has actually got me thinking that someone working with me may also be on this spectrum, as some signs are unquestionably and repeatedly showing. So I have been wondering if I should start stepping out a little, at least with this person. You know, recognition and all that. Something to ponder upon...

Because every one of us is different. We each have our own way of processing information, of processing our thoughts, and of using the talents we have and the skills we have acquired. As long as we can communicate, in an effective manner (e.g. the message I send is received as intended, and vis-versa), then the way we do it is in essence not relevant.



Just one thing in conclusion: if I leave a comment on a blog every now and then, as I know I have done, where the words don’t seem to make much sense, where “typos” go a little over the top, please do not think that I was typing while under the influence of some alcoholic beverage or some funny pills. No! No such luck!

Just be patient with me. It simply means that I am having a bad day, or a bad hour, and that I did not use my “safety net”: I rushed in and typed the comment straight into the comment box, instead of taking time to draft it on a Word document first, checking it out thoroughly, and then copying and pasting... Goodness! All my secrets are out now!

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?

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!

RESPECT!

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!

Where did it all go?

From my first hand – and first time – experience of the Women’s Mini Marathon a week ago, I have been mulling over an impression I got on the day. I remarked on it to Cathal’s Mammy as we were making our way through the crowds, passing some, being passed over by others. And it is this: baring two exceptions, all the women I saw on the day were wearing T-shirts of organisations that provide support and care for what I would describe as “vulnerable” people. And all these are based in Ireland.

I did see two women walking for Amnesty International, and two others walking for an African aid organisation. But every other woman I saw was walking, jogging or running for:
either anyone of the three main paediatric hospitals in Dublin,
- or a specialised ward in a regional hospital (usually cancer),
- or Cancer research,
- or Breast Cancer – or a number of other organisations associated with this
- or their local hospice,
- or Heart Children
- or the Irish Heart Foundation
- or various Alzheimer foundations
- or Down Syndrome (DS Ireland and the Dublin branch seemed to be well represented),
- or special schools for Autism (Saplings and ABA in particular),
- or schools for other special needs
- or…

Do you get the picture? Basic needs, such as health, such as education, where the state should be providing in full. Basic needs that are in fact provided to the bare minimum, and for which ordinary people feel they have to take the matter into their own hands and ensure everyone gets the level of service they are entitled to. It is worth looking at the event website, and in particular at the list of charities that have used the marathon in previous years to raise funds. The numbers are staggering.

I was watching a programme on Setanta Sport last week, all about this mini-marathon (in fact I did not get to watch it all, but most of it at least) and my unease was confirmed when one of the event organisers said that they estimated over € 14 m was raised last year by charities through this one afternoon alone. Personally, I think I could be more. Quick maths: 40,374 women completed the race this year. If everyone of them raises an average of € 500 each (it’s do-able, I am pleased to say that I am well over this figure by now) this bring us to over € 20 m ! ! !

But my unease is heightened by the fact that women felt the need to raise € 14m LAST YEAR, when the going was good, when the economy had only barely starting to slip, when we were still enjoying the roar of our Celtic Tiger. And they also did it throughout the previous years, when the money was flowing around, when for several years the tax intake far exceeded the state spending needs, giving our nation a budgetary surplus for the first time in its history.

For god sake’s, for two years running, Grafton Street in Dublin had the privilege of boasting the highest retail rent rates IN THE WORD, after 5th Avenue, New York! Is this being rich, or is this being “rich”? Ireland was no longer the poor relation at the edge of Europe.

Where did the money go? Where did this surplus end up? Like the huge downpour of a thunderstorm, has it been sucked away into the bowels of the earth? Or into the sewers of our insolvent banking system?

And now that the Tiger is only tiny little kittie, what is going to happen? How will all these organisations that CARE for the less healthy, the less able, the less strong, find their funding? In fact, why do these organisations exist? Should not the surplus share of tax euros over the last few years have been used to eliminate the need for them, and enable the state to do its job and CARE?

Ireland as a nation is well used to survive hardship. The Great Famine and its long felt consequences made sure of that. The Irish have the reputation of being the most generous people in the world, contributing more per capita to charitable organisations than any other nation. But are we being taken for granted, simply because this is what we do?

And the irony is that women will walk, jog and run for charities again next year, and I already know I want to be with them.

I do love this country, I have been here for over 30 years, by choice, I have made my nest here. I have adopted it and I think it has adopted me. But sometimes, things just don’t make sense.




Having said all this, you too can contribute to a local charity, all to do with Autism, if you need to change your phone and are in the market for a “smart” one. Check out Autism Action: for the month of June only € 10 of your purchase could help make a difference. Mean corporations giving money away…? Yes, it’s true!

Update on this post:

I had not meant for this post to be “party” political. And our local and European Elections last weekend had no influence on it. However, it is political, of course!

In a weird coincidence, a few minutes after reading Lisa’s comment, I heard a song on the radio, one I particularly like. But today it just seemed so appropriate! Replace Lily Allen by the Irish Nation, and “her man” by the current government, and what do you get?


“ It’s not fair, I think you’re really mean, I think you’re really mean…

Oh it’s not fair, it’s really not ok, it’s really not ok, it’s really not ok…
Oh you’re suppose to care, but all you do is take, yea all you do is take…”

;-)

PROMOTION TO GRAND-MOTHERHOOD

This “grand-motherhood” business is not as easy as it seems. I certainly was not prepared for the emotional, intellectual and (dare I say it?) spiritual implications of this new position in life.

In my innocence, I simply thought that I would have a new family member to love, cherish and spoil, that he probably would be “just a little bit special”, e.g. dearer to me than say my little nephews - as this new child would be “closer” in linage than they are. In other words, my thinking was all logic, and I did not have a bloody clue! Nothing to prepare me, no one told me otherwise – though I have friends who are already grand-parents, but I was not pointed in the right direction. . . BY THE WAY, thanks for that guys, you could have warmed me!

Of course, when Cathal’s parents told me he was on the way, I have overjoyed, so excited, I could not wait for the birth! I wanted everybody to know, I told whoever would stop long enough to listen that my daughter was expecting MY first grand-child – don’t mind that this was HER first child, the important thing was that this was a new adventure FOR ME. Selfish, I know, but what can you do? That should have been a clue to what was to come, but I did not really see it, did I?

I put a couple of conditions to the “Promotion to the Granny Club” (as I called it). The main one (and I sent an email to this effect to Cathal’s Mammy to make the whole thing official) was that I was not going to change, and would not be your “bespectacled-white-hair-in-a-bun, sit-by-the-fire-knitting” type of granny (not that there is anything wrong with bespectacled-white-hair-in-a-bun, sitting-by-the-fire-knitting grannies, just not my type). I was not going to change and “grown up”, “slow down”, stop enjoying life and going on little adventures anytime I can.

LITTLE DID I KNOW!

The promotion brought with it changes that I never imagined, so subtle, yet so powerful! I have changed my perspective on so many things - to name just a few:


- Grandchildren – they are not just new family members! They are so much more, as important as your own children.


- “Mental Disability” – I had never thought about it, never had to. A new world has been opened up to me by that little extra chromosome.


- The relativity of what is “Normal” – bringing such metaphysic question as “What is Normal?” and “Am I normal?” etc. . . etc. .. etc. . . Head-wrecking!


- Love as an un-exhaustible resource - I had not realised I still had so much of it in me!


- The miracle workers that keep our children’s hospitals going.


And so much more, I better stop here, I could be typing this entry all night!

Over the next entries on my blog I aim to explore what I have lived through in the last 5 months since Cathal’s birth, and update it with any new event.

I hope that it might be interesting to any grand-parent who reads it, but also to parents, as it might give them an insight into their own parents’ reaction (…. Am I being very presumptuous here? For you to tell me). And if Cathal ever comes across it, he will see how much I love him, how special he is to me. . . . Dam you, Little Prince, you have changed my life!