Episode 5 My Little Sister (who happens to have Down’s syndrome)

My Little Sister (who happens to have Down's syndrome) films

My Little Sister (who happens to have Down's syndrome) filmsSo here, is the last, but not least episode of this year’s “My Little Sister (who happens to have Down’s syndrome) Episode 5” with footage from 2012

…and then you will have to wait till 2014 to see what we’ve been up to in 2013!…

So here are my notes about this episode.

In this last episode of 13 minutes. I’ve put less of my own commentary but more shots of life as it happens. I’ve written a bit of background to some of the scenes below:

You will see how Magdalena and I love dressing up and acting and going to exhibitions, art galleries and museums together, we also love circus and street art and Magdalena likes acting out funny skits with me. Although we call it ‘home education’ we actually do most of our learning outside and away from home! She also says funny things without realising it, sorry I had to include the poo joke it was just so sweet and funny to hear her logic. That’s the thing although it takes a long time to get Magdalena to listen and to talk when she does she comes out with the sweetest and funniest expressions.

Last year she also started asking me “What this mean?” as well as the “why?” questions, it is actually quite hard to explain what words mean, she really makes me think hard about how funny our language is as a word can have so many different meanings.

You will also see some of the daily struggles, I felt a bit unkind including them as no one wants to be seen crying but then I thought I can’t just show you all the happy bits as a lot of daily life takes a long time to do and is hard work. Things such as going from one place to another, things such as a necessary daily thing as brushing hair. Most children hate having their hair brushed at some time, but Magdalena absolutely hates her hair being brushed, she always has done and we thought she would grow out of it, but she hasn’t. Now she can talk, she tells us it really hurts, even though we are hardly touching her head and use lots of detangle conditioner and special brushes and distractions and treats and do it everyday to get her used to it like we did with teeth brushing. She also says that the sound hurts her ears and she puts her hands over them. It’s very difficult to brush her hair, and we have to use hundreds of different tactics daily to try and brush it. She is hypersensitive to touch and to certain textures, like mash potato. Magdalena can have a ‘sensing overload’ she can feel really overwhelmed when there’s a lot happening at once and just freezes and won’t move or talk or respond at all to anyone, or anything. This can be particularly hard in public places, especially as she has a phobia of babies. Because often in public spaces there are babies, or toddlers giggling, laughing or crying, or screaming, Magdalena will start crying and will cling onto me or mum and won’t move, babies and toddlers really distress her, no distress is too mild a word, they terrify her! This is a big struggle, and no matter how hard we try we cannot get her around her phobia of little kids and babies.

She seems to hear differently to me, sound seems to have an extra effect upon her, like laughing hurts her ears for example. I love watching her play the piano, you can see the impact of the sound of each note as she plays it, and her wincing, then her bravery at playing the next sound. It’s like she wants to make the piece of music but she has to overcome the sensory overload and make sense of the sound she has just made at the same time.

As well as living with Down’s syndrome, Magdalena also lives with nystagmus which makes her partially sighted. It means her eyes constantly wobble back and forth, up and down; making it hard for her to focus and concentrate on things. It makes seeing tiring for her and is especially bad in places where there is a lot of movement, she will just freeze and ‘go on strike’ on the ground. Her hypermobility means her muscles are quite floppy and get tired so luckily we take the buggy everywhere. Particularly it is hard for her to look at you -she is not being “shy” she just can’t see you as you walk towards her, which must be frightening for her especially with lots of voices and noise around when she can’t see where it’s coming from. To meet Magdalena you need to stay still and crouch down and reach out to touch her and gently speak to her and then wait for her to be able to scan you enough to see you. Changes of light, like between rooms make it really hard for her to see. Mum says the way nystagmus affects her makes it extra hard for her as people with Down’s syndrome learn best visually, so it is harder for her to learn to read and she can’t write her name yet. She will often shut her eyes when she is walking, when we say “why have you shut your eyes?” she says “I see better” She must “see” with all of her senses not just her eyes. Steps and stairs and ceilings are hard for her as the depth seems out of proportion, so she needs to hold a hand and lots of persuading as she thinks the ceiling might fall on her head. You can read more about nystagmus here. It is easier for her to see things with torches and lights as it makes them brighter for her, last Christmas we saw her making shapes with her torch and asked her what she was doing she said ” I painting with light’ It is really beautiful to see the shapes she makes and her joy when she “paints with light” She loves to have a torch with her and a magnifying glass to help her see.

So to keep you from waiting, here is the 2012’s last episode – if you enjoyed it then please leave a comment here and also head over to YouTube on this link to leave a comment underneath the film 🙂

I love to hear your comments below too, which is your favourite scene? Anything you have found interesting?

There will also be a couple of Mini My Little Sister films coming soon, but the next episode of My Little Sister…will be released in 2014 where you can see what we have been up to in 2013.