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!

Why Don’t You Trust Me?

It is probably fair to say that I have some life experience behind me: over half a century on this earth teaches you a few things. Among others I can mention:

• Growing up in one country, then adapting to and finally adopting the subtly different ways of another;
• Going through the varying shades of marriage life, from the very highs to the very lows;
• Having two beautiful children, and guiding each for twenty odd years, then learning to let them go and fend for themselves;
• Putting various courses and several academic qualifications under my belt, and moving along a career path with twists and turns that have brought me to touch on many areas.
  

Yes, I might know a thing or two about life…

Or so I thought.

Until a ten-and-a-half-month old child pipes in and gives me a big lesson in Respect, Trust, and Humility.

Since Cathal was born, I have had to make great efforts not to “get in there” and give his mammy my two pence worth of opinion on what she should or should not be doing. It can be difficult to take a step back and keep quiet when you see how any parent interacts with his or her child; it is especially hard when that parent is your own child. The parenting reflex tries to kick in, and I have found myself calling on my willpower time and again not to say anything.

Do not take me wrong, it is not that I do not trust my daughter. On the contrary, I think that she is incredible, and she has truly surprised me and gone beyond any expectations I might have had of her. She has found a way through motherhood that is working for her, and for Cathal. I have full confidence in her. I am not worried about her. It is just my own mothering instinct re-surfacing every now and again, tugging at me to guide and protect.



Lesson One: When I meet up with Cathal, my first reaction is always to take him in my arms, hug him, kiss him, hold him, and then play with him. But Cathal does not like being held and hugged and kissed as soon as I appear in the room. And why should he? Cathal likes to assess the situation first. I imagine his train of thoughts are:
- Who is she?
- Oh yea, I know! Now, do I want to talk to her? Is she interrupting me? Am I in the mood, or do I prefer to keep doing what I am doing now?
- Granted I agree to interact with her, do I want to be touched? Or hugged? And kissed? In short, am I ready, right now, for this level of intimacy?

If this does not suit Cathal, right then, I must respect him. So Lesson One is: even though Cathal is very young, he has his boundaries, the same as anyone else, and I have to RESPECT them. And if I don’t, the whole house hears of it, believe me!



Lesson Two: I generally do not try and assess “how well” Cathal is doing by comparing him to “other” children. I know it is fruitless and could be the source of unjustified and unproductive worry. Generally speaking this is easy enough to do. Except as far as food is concerned. For some reason, I find it hard not to worry about the fact that Cathal can be what I would call “fussy” about food. Obviously, his mammy’s milk is the best for him, and he thoroughly enjoys this. It is also benefiting him well, as his weight keeps going up and he is steadily growing. BUT, and this is my “but” and no one else’s, my mind keeps wandering if he “shouldn’t” be eating more solids.

I keep going back to his own mammy and his uncle, and how well they took to solids very quickly. I keep thinking back only a few months ago to my youngest nephew, only 8 months older than Cathal, and how at ten months of age he was wolfing down one bowl of dessert after a huge plate of mashed up dinner, twice a day, plus a big cereal breakfast, and a mid afternoon snack of fruit puree with a full yogurt!

From what his mammy has told me, from what I have witnessed, depending on his mood, depending on what is happening around him, Cathal might, or might not, eat a few spoons, or a few more. In short, I have been worried.

Last Saturday, I met a friend for lunch and we chatted for several hours: she is a grandmother, several times over, and one of her grandsons has DS. So we were “swapping stories”. I expressed my concerns about Cathal vs. solid food. No matter what she said, even she could not lift the nagging worry. Then I went straight from this long and late lunch to Cathal’s home. And when teatime came, Cathal sat at the table, and the clever boy, proving my concerns are totally unjustified, demonstrated that he could eat ALL his dinner, and ALL his dessert if he wanted to. I went home thinking that this child had a good laugh at my expense.

Conclusion of Lesson Two: on Saturday, Cathal was telling me:

“Nan, mind your own business, this is my life, my way of doing things, it works for me. So but off, stop worrying, and TRUST ME!”



And this brings me to Lesson Three: Humility.

Through this incident on Saturday, I was reminded, yet again, that I do not know everything. Despite my accumulated life experience, I still have a lot to learn. And Cathal’s extra little chromosome brings me into an aspect of life I accept I know nothing about, where everything is put back in its own perspective, must be considered in its own merit, where the bigger picture is lit from a different angle.

A ten-and-half month old is my new teacher. Who would have thought?