19. My Sister by Mia Goleniowska (aged 11)

My name is Mia, I’m 11 years old and I have a younger sister called Natty who is 8. Natty and I both love netball and horse riding and singing and baking cakes and watching films. We both have Blue Peter badges.

Mia from Downs Side Up writes about having a sister with Down’s syndrome

Mia from Downs Side Up writes about having a sister with Down’s syndrome

Natty also has Down’s syndrome, which means she has an extra chromosome in every building brick of her body. I think they look like wonkey Twiglets.

Down’s syndrome is a type of learning disability. That’s what they call it when you are born with something that makes it harder to learn. When she was a baby she was ill a lot and she had her heart fixed when she was two but she is strong now.

Last Summer, we both had our tonsils out at the same time because we couldn’t breathe when we were asleep. I think we get that from Dad, who snores like a pig! We both got better really quickly.

Natty is a bit smaller than I was at her age and needs extra help to learn to do things in her own way. Sometime this takes time and she has to practice a lot, like when she was learning to walk. Physiotherapy and Portage helped her crawl and now she can swim and pedal her trike. I hope she learns to ride a bike like me one day!

She often had extra exercises to do, like speech therapy to help her talk. We used Makaton signs to understand each other. Now she doesn’t use the signs unless she is excited. She talks now, but sometimes makes up her own phrases for words, like ‘sleep thinking’ for dream. I think that’s really clever. One really funny thing about Natty is that in her sleep she shouts “No! I want to do it BY MY SELF!”

We all need extra help sometimes. I get Mum to help with my homework, Mum sometimes can’t open jars, and Dad isn’t very good at reaching the back of his head by himself when he shaves his hair!

We have lots of friends who have a learning disability. This weekend we had lunch with the team who work at People and Gardens nursery. Sometimes we go and play cricket there with them. I like these friends because they are fun and friendly and they make me laugh. They also have nice biscuits to share.

Sometimes it’s hard to understand what someone with a learning disability is saying, but I’m used to it now. You just have to stop and listen more.

Mum used to do talks at conferences with a man called Peter who had a learning disability. He came to stay with us just before last Christmas and we decorated the tree together. We all went out for fish and chips and he ate the biggest fish I have ever seen.

Peter used to ring every week and chat to us and see if we were OK and make us laugh. Peter died last year and we were all very sad. We miss his phone calls.

I think I’m really lucky to have a sister like Natty because she has taught me that we are all different. My school friends all adore her and want to have a sister like her. They say she is cute, but I know she can be a pain, like when she copies me. Sometimes she embarrasses me when we are out, but Mum and Dad take me out on my own for treats sometimes too.

Natty and I like dressing up and dancing

Natty and I like dressing up and dancing

When I struggle to learn something like a new piano piece, I think of her determination and that helps me try harder.

Written by Mia Goleniowska, 11.  This blog was previously posted on Huff Post and on their excellent blog Downs Side Up.   

Eilidh is a massive fan of I Love You Natty: A Sibling’s Introduction to Down’s Syndrome which was co-authored by Mia.

Natty is Eilidh’s hero and she wants to be like her when she grows up.  They also share a passion for brightly coloured tights.

If you enjoyed this blog then please donate a few pounds to support the vital work that DS Scotland undertake.

www.justgiving.com/DownWithDad