Do you sometimes wear non-matching socks? When you can’t find ones to match or just because you want to?  Well on the 21st March you have the perfect excuse to and Agi is going to tell you why.

Agi has been making videos about her life with her little sister, who just happens to have Down Syndrome, for many years. We asked her to tell us more about this condition, and about life with Magdalena and to share some of her videos with us.

 

Firstly though who am I?

I’m called Agnieszka (Agi for short) and I am home educated with my little sister Magdalena, who is 7 years old. I have a website which I blog on about our life together and anything else I am interested in. I want to be a filmmaker when I’m older, and you can view lots of films that I’ve made on my website, and Magdalena wants to be an artist. She is one of my best friends. We have loads of fun together, and I don’t treat her any differently or treat her ‘specially’, even though she happens to have Down’s syndrome. Which is where the lots of socks come in…but first, let me explain.

I would never have known this unless my little sister, Magdalena was born with an extra 21st chromosome.

Have you worked out yet why World Down Syndrome day is on the 21st of March?

It’s because people with Down syndrome have three chromosomes on chromosome number 21, instead of the usual two. This is also known as Trisomy 21.

Why is it Called Down’s Syndrome?

So why call it Down’s syndrome? No, it’s not because people with Down’s syndrome are ‘down’ or grumpy, it’s actually because Dr John Langdon Down discovered the condition, and it was named after him.

Lot’s of people my age don’t know what Down’s syndrome is, (actually lots of adults don’t either) and that can make them scared of what they don’t know about, so they ignore Magdalena or talk ABOUT her instead of TO her or say something unkind thinking she won’t understand or be hurt by it. So before I get onto the socks, I want to tell you a bit about what Down’s Syndrome is and what it isn’t!

What is Down’s Syndrome?

Well for a start it’s not a disease or an illness, you can’t catch it, nothing someone does or doesn’t do causes it, it just happens sometimes and has always happened throughout history and in all countries in the world. Actually, there are some amazing ancient statues of people with Down’s syndrome but that’s another article.  It happens quite a lot, about 1 in 700 babies are born with Down’s syndrome every year. So I suppose it is pretty normal really. The thing is until quite recently people who had the condition were often taken away and put in institutions and treated badly and weren’t even allowed in mainstream schools until the 1970s . Because of this terrible treatment from society, there are a lot of wrong beliefs still around.

How does Down’s Syndrome Affect People?

 

It is called a ‘syndrome’ as this extra chromosome can affect people who have it differently. So for example, some three-year-olds with D.S. can run around really fast, but my sister Magdalena is only just learning to run while holding onto my hands and she’s almost seven. Heart and medical conditions are more common. A lot of these heart conditions can be fixed with operations these days. Everyone who has Down’s syndrome will find learning things slower and trickier and harder to remember or deal with new situations.

There are lots of reasons why it can be harder to do things, hyper mobile joints mean that Magdalena gets tired quickly when she walks and she trips easily. As her muscles are weaker it is hard for her to undo a zip for example. She has poor eyesight and cannot see pencil writing or small print, so she uses black felt pens to write. It takes her longer to learn & remember things or understand when something is dangerous. Speaking clearly can be especially difficult and it takes Magdalena a while to think of what she wants to say and then make the right shape with her mouth to get her words so people can understand her. We have used Makaton, a type of sign language to help her, which she has learnt and can use really well. This is pretty cool as you have your own secret code to use!

It takes her longer to learn & remember things or understand when something is dangerous. Speaking clearly can be especially difficult and it takes Magdalena a while to think of what she wants to say and then make the right shape with her mouth to get her words so people can understand her. We have used Makaton, a type of sign language to help her, which she has learnt and can use really well. This is pretty cool as you have your own secret code to use!

Is Down’s Syndrome Painful?

Some people say to me “Oh I feel sorry for your sister” but she doesn’t “suffer” with it, it is not painful! The only time she feels pain from having Down’s syndrome would be if she was left out or teased for being ‘different’. You don’t need to feel “sorry” for my sister (or me!) It is just the way she is made, like someone having blue eyes or brown eyes. It doesn’t stop her from having a brilliant life. My sister does everything I love to do and she feels the same feelings as me. She loves her life and I love being with her and being her sister.

Some people think people with Down’s syndrome are always happy, like angels, but that is totally wrong too!

Magdalena has exactly the same emotions as you and me. She gets angry, jealous, cross, sad, happy, grumpy, silly, tired, irritating, funny, loving, & cheeky like everyone.

Magdalena loves watching my films & music videos, she is my number 1 fan and is always encouraging me! Magdalena’s hypermobility means that she can do the splits and many other incredible moves and in my music videos she is also my number 1 cameo star, where she demonstrates her amazing abilities!

People with Down’s syndrome share some looks that are similar, such as almond-shaped eyes, but they are more alike in looks to their parents than they are alike to other people with Down’s syndrome and of course, will have completely individual personalities and interests just like everyone else. So just because you meet one person with Down’s syndrome don’t assume the next person you meet with Down’s syndrome will be the same, they won’t be-we are all individuals with similarities and differences!

Just because you are born with Down’s syndrome and find it harder to walk, talk or learn new things doesn’t mean that you won’t ever learn these things, it just takes longer, a lot more practice, a lot more determination and a lot more support to achieve things that I take for granted, like dressing myself, cutting up my food or riding a bike. It makes my sister’s achievements mean even more. People with Down’s syndrome change and learn and grow all through their life just like me and you.

Why Wear Odd Socks for Down’s Syndrome Day?

This is because all over the world people are going to be wearing non-matching socks for World Down’s syndrome day.

This is to show that people with Down’s syndrome are different but the same!

None of us like feeling left out, people with Down’s syndrome are no exception. They want to be included, so reach out and get to know the person, not the condition.

An odd pair of socks may be a different pattern or colour but can still be worn together quite happily if we change our attitudes about having to wear matching socks.

So to wear non-matching socks is to remind us that the way we think, is really important, and makes a difference to whether people with Down’s syndrome feel included or not.

 

When I was 8, and to this day, I hear people give their opinions about my sister without getting to know her. You see, to get to know Magdalena you need to slow down and be patient to hear what she has to say, she has to feel safe with you to open up to you and a lot of people are scared to wait and listen or too busy rushing around to do this.

If you do take the time to slow down and wait and listen to a person with Down’s syndrome you may discover a new friend with a lot to share with you.

So, because I wanted others to see the ‘real’ Magdalena, I started documenting my life with Magdalena and putting this into a film each year called “My Little Sister (who happens to have Down’s syndrome) to change people’s views on Down’s syndrome, and show that Magdalena is really more alike you & I than different! It has become a big hit, the first one reaching 17,000 views on YouTube.

So wear non-matching socks on March 21st and tell everyone why and show everyone my films and my website to spread the word that Down’s syndrome is, well not such a big deal!

But our attitude towards people with Down’s syndrome and other disabilities IS a big deal, we can choose to make a bit of effort to include that person and possibly make a new friend, or not bother and leave that person out and make that person feel alone and unloved.

Personally, I think it’s much more interesting and fun to wear funny socks!

 

If you watch my films you will see for yourself that what I’m writing is true.

 

Watch the first seven ‘My Little Sister ( who happens to have Down’s syndrome)’ films.

Watch the latest 44 min ‘stand alone’ My Little Sister…film

 

 

Agnieszka blogs on her website, where you can find tons of information about Down’s Syndrome. You can also subscribe to her YouTube Channel to find her latest films and music videos and ‘like’ her Facebook page to get feeds on her latest films and blogposts, and follow her on Twitter.

 

More about wearing your funny socks for World Down’s syndrome day