Mum started a family support group when Magdalena was very little so families could meet up together and I’ve made lots of friends through it. In June we had our annual Central Wales Down’s Syndrome Support Group Summer BBQ. It was really fun, because I got to see my friend Josie, (who lives 2 hours away) and Niamh (who lives a hour away) as well as lots of others. We had a great time, all playing with our younger sisters and going for walks and climbing trees together.
Niamh, me, and Josie messing about together.We are all big sisters to our little sisters who happen to have Down’s syndrome.
It was great fun to go climbing trees again with my friends. We had lots of fun and discovered lots more trees, and ventured further into the woods than we’d normally go. We helped out with the little kids, and helped with the food.The next gathering will be out Christmas party. Going to a support group is great because you get to make new friends!
Central Wales Down’s Syndrome Support Group Fundraising Concert
<— Me and Josie This year we had our first ever fundraiser it was a concert. It was really exciting helping organise it and me and Josie were running around the car park with a takeaway, jumping around because we couldn’t wait for it to start. And we couldn’t wait to draw the raffle!
Me and Josie couldn’t help but buy our own raffle tickets too!
Selling raffle tickets was really fun. And It was great practise for my maths, somebody gave me a £20 note, and I had to work out how much change to give. I had to be really quick at tearing them, because people were coming through the door all the time! But we did really well in selling them.
None of me and Josie’s tickets were drawn. But Angela’s was drawn, she knew how much I wanted to win the “photo shoot prize”, and so she gave it to me! She’s so kind!
About Down’s Syndrome
Down’s Syndrome is not a disease, nor a illness. It is a condition that you have all your life from the day you were born. It happens by chance. It makes learning slower and trickier and it makes some medical problems more common.
Inside every cell in your body you have pairs of chromosomes, half from your mum and half from your dad. When you are conceived these chromosomes match them selves together. Usually there are 23 from the mother, and 23 from the father, making 23 pairs of chromosomes. As the cell multiplies as you grow into a baby all the chromosome pairs are replicated too. Sometimes, by chance an extra chromosome happens this can be from the mum or dad and it is on pair number 21 that it happens. When this happens it is called Down’s syndrome or Trisomy 21 (because there are 3 chromosomes on pair number 21) So, people with Down’s syndrome have 47 chromosomes instead of the usual 46.
This is what Down’s Syndrome is. The extra chromosome can effect someone’s physical and mental learning. It is called a syndrome as the impact of the chromosome can affect people with it differently. So for example, some three year olds can run around really fast like Josie’s sister Poppy, but my sister Magdalena is only just learning to learn to run while holding onto my hands and she’s almost seven. Some people have heart conditions, some don’t-it’s not that it’s more or less severe in different people as it doesn’t stop at birth this extra chromosome has an effect all your life long just like all the other chromosomes in your body do. People with Down’s syndrome change and learn and grow all through their life just like me and you.
Being Magdalena’s sister, I hear people talking about her and see the way she is treated all the time. Sometimes it’s sad for me as often people don’t wait for her to reply to them, she is much slower to speak and people say she is “shy” when she is not. This then makes her think she is “shy” she is very impressionable. It is difficult to speak out sometimes but I want to speak out for her because I love her so much and she can’t speak out for herself yet and I want other people to love her too. I wish parents would encourage their children to make friends with Magdalena.
One terrible myth is that people with Down’s syndrome are always happy. Wrong. People with Down’s Syndrome have the same emotions and feelings as we do: fear, sadness, love, happiness, shyness, courageousness, delightedness, exactly the same as me and you.
And this is why I think it’s a “terrible” myth. When I say that my sister has Down’s Syndrome, people sometimes say: “Oh, they are so happy and loving?” It’s like they think she is a gnome from a fairy tale, almost not a real person, the trouble with thinking like this is that if people believe she is “happy & loving” it dosen’t matter if she is teased or talked about or left out of children’s games or parties because “they’ll always be happy”it gives people an excuse to not include her (as they can assume that it won’t matter to her,that she won’t feel upset or lonely or hurt or angry) So many people do not bother to take the extra time to get to know her and I wonder if this is why? Its pretty sick the way some people think about my sister and other people with Down’s Syndrome. I don’t like the way people say “they” or “a down’s” either as though she isn’t an individual but a group to be ignored.
Having Magdalena as a sister has helped me learn many things that I may never had learned. Like (VERY GOOD) patience, this is because she takes a long time to learn new things. She will learn them eventually but whilst she is learning, I need to remember that it’s hard for her to remember what she has just been told or shown, I must be patient and kind and teach her how to do something again and again like she has never been shown before.
It feels frustrating sometimes as mum isn’t available straightaway as she is always watching out for Magdalena, but then that’s good also because I have learnt to be very capable and try and work things out for myself first. With Magdalena everything takes a lot longer and I watch out for her when we play, as she trips easily and bangs into things because of her nystagmus.
To me, Magdalena is just like any other little sister. I love to teach her things, and share the joy of her achievements and successes. She is the best little sister I could ever have and we have the greatest fun together. If we fall out we always make up quickly and get back to having fun together, she has a great sense of humour.
I hope to change people’s views and judgments on people with Down’s Syndrome by continuing making my My Little Sister (who happens to have Down’s syndrome) films. If you haven’t seen them already, please take a look at them here and share them on your networks:
http://my little sister part 2//youtube.:watch? – Episode 2 made aged 9.
http://award winning my little sister part1//youtube.:watch? – Episode 1 made aged 8.
The third part (of many more) will be out in January!
Do you have anything to say about Down’s syndrome? Do you go to any support groups? Were you at the concert or the BBQ? Do you have a sibling with Down’s Syndrome? If you do, then please leave a comment!