Something very freaky here!

Last week, I noticed that the Christmas cactus on my bedroom windowsill was... budding. Surely this could not be right.

It usually starts showing little signs mid to late November, and is in full bloom (and by this I mean totally covered, like a perfect soft ball of pink) by early December, then it goes back to sleep for another year. I have another larger one, with differently shaped flowers, and that one is always about 2 weeks behind.

But no mistake, it is flowering alright. Not very many flowers, but they are there none the less. See for yourselves:

I have had it over 10 years, it has never ever flowered mor than once a year before.



If you think this is strange, there is more – if you live in Ireland, you know what is coming, but if you don’t... suspense, suspense!

Last week I definitely started smelling Spring in the air. And last weekend was quite nice. This, and the millions of daffodils showing their rays of sunshine, and the change to summer time gave me great hope. Summer was on its way (if you want proof, let Clive tell you all about it). Bye bye horrible winter, the worst, wettest, flooddiest, coldest we have had in years and years.

Then I woke up yesterday morning to a snow storm. Ok, it did not stick, but still...! And this morning my car was covered with a crust of snow. And I do mean crust: the wind-chill factor had hardened the thin blanket into a lovely crusty icing. Thankfully the roads were clear, but it makes me wonder: what the hell?

And did my cactus know what was coming? Freaky!

T’is me, t’is me...

Last Friday evening, and Cathal and I are playing a fun game: “Where is…?”




So I ask and sign “Where… is… Mamma?”

And Cathal’s face brightens up, he looks left, right, left again, then points to the kitchen and signs Mamma.

And yes, Mamma is indeed in the kitchen.




So I ask and sign “Where… is… Dadda?”

And Cathal’s face brightens up again, he looks all around, then points up and signs Dadda.

And guest what? The Dad is upstairs…!




On we continue with our game, and I ask and sign “Where… is… Cathal?”

Now a big smile appears on the little face, an index points to his torso, and then the hand shapes itself into a horizontal curve… Hold on a sec, did you sign “Cathal”? I repeat the question, and he repeats his answer with the two clear signs.


Ok, the “C” curve for Cathal should be vertical, but hey, what is important here? He told me his name, and I understood. Similarly he signs Mamma and Dadda the same way at the moment, and it’s for us to work out the context. But as long as it’s all about his parents… it’s for his Dad to say how he feels about being signed as a mammy…

The thing is that this was the first time Cathal was signing his name, first time ever, ever! And he did it for me! Yea!




So we moved on the last part of the game, me asking and signing “Where… is… Nana?” and Cathal’s pointing at me, and then his hand rising to touch the back of his hair (his version of Nana).




We then excitedly went to tell Mammy that Cathal could sign his name. She did not quite believe us, but we demonstrated. When the Dad came downstairs we also told him, but our attention had shifted to more interesting things, so we did not demonstrate again. However I have it from reliable sources that Cathal has shown both his parents throughout the weekend that he not only knows his name, but can produce proof of his identity at any time.

But I was shown first. He trusted me enough to try out the sign with me. I feel very privileged. And kind of chuffed.

Another simple yet precious moment between my little prince and I.

3 * 21 – But Where Are They?

Today, 21st of March, is World Down Syndrome Day, a day that:

aims to promote awareness and understanding of Down syndrome and related issues: and to mobilise support and recognition of the dignity, rights and well being of persons with Down syndrome.

3 * 21. 3 of chromosome 21. Who ever thought of using this date was quite clever. And it is only right to raise awareness of what is Down Syndrome, or Trisomy 21. To demystify it, to put forward facts, to show that people with DS are just that before anything else: people.



But then, why are they so invisible?

Last January I was prompted about a series of 3 programmes on the UK Channel 4 that stepped outside the norm: “How to look good naked – with a difference”.

Now, I am not much of a fan of Gok Wan: though I like his ideas, I find them simple and quite interesting, the man simply annoys me tremendously. For some reason he gets on my nerves, and until that particular series came on I had never been able to watch a full programme.

In this case, I not only stuck it through the first episode, but found myself waiting for the next two. He applied the formula of his tried and tested show “How to look good naked” to a woman in a wheelchair, a woman with a prosthesis leg, and then most interestingly a blind lady. This last episode was obviously a real challenge, for how do you “show” a blind person what she looks like, and not only give her a sense of how people see her, but also of how to present herself? I must say I found the programme very moving, and was almost cheering at the end when the woman walked down the catwalk in full knowledge of her appearance and thoroughly enjoying the applause she was getting.

Apart from the theme of each episode, and the fabulous results in terms of regaining self-esteem that each woman obviously achieved, there was a secondary theme running through: why do High Street shops and brands never show people with disability in their advertising campaigns? The argument put forward was this: it is a fact of life that people with disability exist, that they form part of the customer population. Not showing them is a form of discrimination. So he engaged the help of 2 women in wheelchair to design a poster campaign and prove that a disable person can be a model and represent a brand as much as an able bodied one.

And to be fair to Gok Wan, or the producers of the series, one of the models travelling the catwalk with each of the participants was a stunningly beautiful woman with an amputated arm, in full view. Hence the man does acts on what he preaches.

Following on this he launched a petition destined to high street retailers in the UK to engage disable models in their advertising campaign.

This is interesting of course. Any thing that can move anyone towards inclusion of the “different” is welcome. But the whole emphasis seemed to be on the physical disability. What about the intellectual?


Has anyone seen an advert for any product or service featuring a person with Down Syndrome? Apart from the posters for the Special Olympics, or the current TV campaign for the AIB Better Ireland sponsorships, I personally have never seen any such person in what I would call mainstream advertising.

Why is this? Down Syndrome by the very nature of its manifestation is the most easily recognised form of intellectual disability. So, where are these people? If one in about 750 has DS, shouldn’t they be more visible?

I am not so naïve as to ignore the fact that people being portrayed in any advertising campaign, because they are “the face” of a product or a service, need to look beautiful and healthy. But, as an example, my little prince Cathal is beautiful. And right now he is very healthy. Having Down Syndrome does not negate health. Having Down Syndrome does not negate beauty. In fact I have often been moved by the incredible beauty I have found in some of the photos of people with DS I have had the pleasure of seeing over the last two years. Yet, before this, would I have stopped and looked? Would I have allowed myself the chance to be moved thus? Probably not.

Having said this, I am as guilty as anyone else for keeping DS invisible. Last year there was a campaign launched by Calpol for finding a new face for the product. I fleetingly thought that it might be a good idea to enter Cathal – ok, I am biased, and I am repeating myself, but he is a beautiful child! I even briefly mentioned it to his mammy. At the same time, deep down, I knew that, should he be entered, he would not stand a chance, he would not make the first cut. A glance at his eyes, and the photo would be put on the “NO” pile. There was no point of trying, as who would choose a toddler with DS to represent a product that is supposed to make children feel better? The child on the product packaging needs to show health, happiness, wellness. No one wants to see the face of a “problem” on their product.

Yet, guess what: one person in about 750 has the face of that “problem”. And that person, as much as you or I, is part of our society, part of what it is to be human, and let's not forget: also a consumer...

Happy 3 * 21 Day!

CELEBRATION!

The 10th March 2008 – Only a few minutes into our world
Le 10 mars 2008– Seulement quelques minutes dans notre monde

Next day, getting to know each other

Le lendemain, apprenant à se connaître

4 months old – 4 mois

5 months old – 5 mois

9 months old, with Super-Grand-Mother – 9 mois, avec Super-Grand-Mère

1 year old and so brave! – 1 an et si courageux !

16 months old – 16 mois

18 months old – 18 mois

21 months old – 21 mois

Now, at a full 2 years of age – Maintenant, à 2 ans complets:

Super dressed up for his birthday party – Super bien habillé pour sa fête d’anniversaire

Post-party tie and waistcoat off! – Sans cravate ni gilet après la fête!



HAPPY BIRTHDAY CATHAL!

Simple moment, but a job well done!

Moment simple, mais un travail bien accompli!



Cathal adores emptying the clothes basket when his Mammy brings in the washing from the line. They need to be folded and put away, don’t they?

Cathal adore vider le panier à linge quand sa Maman rentre la lessive de dehors. Le linge doit être plié et rangé, n’est-ce pas ?

I love these simple moments, they are so precious simply because we are together. But mixed emotions these last few days: the pure happiness of seeing Cathal in such good health and so happy, and the pain of remembering what he went through barely a year ago. Oh! How much I love my Little Prince!

J’aime ces moments simples, ils sont si précieux simplement parce que nous sommes ensembles. Mais émotions mixes ces derniers jours: le pur bonheur de voir Cathal en si bonne santé et si heureux, et la douleur du souvenir de ce qu’il a enduré il y a à peine un an. Oh ! Combien j’aime mon Petit Prince !