DS GirlSo many of us live in little boxes from which we quite happily survey the world. Until a window in our box shines a strong light onto a corner we have quite overlooked. Suddenly the box and everything it holds is changed. We look at the world in quite a different way.

Recently I was sitting at a fundraising tea party given by the George based Down Syndrome school, Up with Down’s. The glorious thing about this tea party was that it was served to us by all the people with Down Syndrome. They had made all this delicious food themselves!

tea partyThese warm arms came around my neck as I was given the biggest hug. I looked up into the smiling face of Nikki, a Down Syndrome girl I had met several weeks beforehand, learning to play golf!
“What a warm, wonderful hug!” I laughed at her.
“I like you, Gaynor!”, she said giving me another squeeze before she was off inside to help the others with our tea and coffee.

When I was a child, whenever someone did something stupid, we would say:”Oh man, don’t be so spastic!” Now, being spastic myself, I shudder at our mindlessness. In the same way, we regarded Down Syndrome people as stupid and “retarded”!

How thoughtless we were and how little we knew. One of my boxes that has recently been redefined has been: People with Down Syndrome.

NixWould you believe that our current government has withdrawn all funding for special needs education! I find this unbelievable. They expect Down Syndrome students to attend mainstream schools! But then seeing as how our government treats education as a whole, I shouldn’t be surprised. Overseas in Europe and America, they are enlightened regarding the education and development of Down Syndrome children. South Africa is a different story altogether. Among a large percentage of our society, the mentality is that if you are not normal, you are not acceptable! You should be ignored, forgotten about and even locked away in an institution.

UpUp with Down’s began when a few parents saw that their Down Syndrome children were falling into an educational abyss. They decided to get together to teach their children. Their dream simply took off! Up with Down’s school was born! Realising there were other children with special needs, their school was opened to them as well.

Up with Down’s now offers boarding facilities. It is so wonderful walking the corridors, seeing people laugh and chatter to one another. I was shown a girl’s room. I was astounded at it’s neatness. Clean, tidy, everything absolutely in it’s place. The image of her slippers placed so perfectly together under her windowsill will remain etched in my memory for a long time.

I think the reason that room was so spotless, was that it was all about control. That girl had order stamped over her bedroom, a little world she recognised as hers. Outside that room, outside Up with Down’s chaos and disharmony feature. The wider world can often be a frightening and bewildering place.

Up with Down’s have acquired a piece of land opposite the school on which they plan to build a permanent home for adults with Down Syndrome. The challenge now is to raise three million rand necessary  for the development.
I know where my charity money is going!

I was totally gobsmacked to discover that a woman with Down Syndrome received a degree. She took longer than most to achieve it but she finally qualified at Bloemfontein University. Isn’t that simply mind blowing? That is where I have had to reconsider my box. I have recently learned to never put a roof over Down Syndrome people’s heads.

At that tea party, I spoke to Jan, Nikki’s mother. She counts her daughter a blessing.
“I wouldn’t have it any other way. She sees differently. She sees things that I don’t. She has taught me so much about life.”
Nikki recently remarked to her mother: “Decide to be happy. And then – be happy!”
I love that wisdom!horse

The author, Yvonne Pierre says in her memoir, The Day My Soul Cried:
“Often people ask, ‘How can you say you’re blessed to have a son with Down Syndrome?’
My outlook on life has forever changed. I see my own challenges differently. He’s always showing me that life is so much bigger than self.”

The eyes of people with Down Syndrome are different to normal eyes. “One only has to take the time to gaze” says L.L. Barkat, “and the beauty shocks!” Metaphorically she looks at the eyes with which they see the world.

I find this poem  by Kazia who has Down Syndrome strangely beautiful.

The Dream of Kasia

I am lonely
Why are you staring at the computer screen, not me?
Where do you dream?

Tomorrow I will make an experiment.
God will do confessions.
Will He have time to talk? Can one can come to Him and talk seriously?
Where do you dream?

Do you die in your clothes?
There are small rooms in Heaven, beds, two rooms and two beds.
Why did God create the world?
Where do you dream?

I would like to know when is the end of the world. Is it on Saturday,
Tuesday or maybe Wednesday?
When Liniewski calls tell him that I am cheating on him.
Bury me in Powazki and cover me with soil, like you covered Father!
Where do you dream?

— from the words of Kasia Puciata

Apart from the tea and cakes, at Up with Down’s, I was given so much. So incredibly much.
I will be visiting them again.

And again.boy


*** If you would like to make a donation to Up with Down – George please press here  ***

*** Photos by courtesy of Up with Downs and Laura Kilgus @ www.9tenphoto ***