Having a sibling with Down's

A sixteen-year-old girl called Kate Saunders posted so passionately about testing for Down's (see entry further down the page) that I asked her if she'd like to write about what it's like being 16 and having a little sister with the syndrome. And so she did. And it's great. The picture is of Kate's sister Alice, holding her newest cousin, Michael.

All about Alice

The last time I took my 8 year old sister Alice to the cinema, we went to McDonalds as this is Alice’s favourite treat! When we got to the counter, the woman behind the till asked what we would like. I ordered mine and then asked Alice to tell the lady what she wanted.

“Chips and nuggets please.”

Well, I could have seen that coming - that’s what she always wants! The woman then looked at me and said, “What drink does she want?”. To which I replied, “I don’t know. Why don’t you ask her?”

If Alice had been any other 8 year old girl the woman behind the till would have asked her what she wanted to drink rather than assuming I could mind read. But Alice isn’t any other 8 year old girl. Alice has Down’s Syndrome.

When Alice was born I didn’t know what Down’s Syndrome was, as I was only 8 (I’m now 16). Dad sat me, my older sister, Beckie (9 at the time, now 17) and younger brother, Jack (4 at the time, now 12) down and told us that Alice was a very special baby because she had Down’s. He told us she may find it harder to do things, and that we’d have to help her lots.

Well, Alice is definitely special!

She went to main stream play school and now goes to main stream primary school, where she has an LSA to help her every morning of the week, but in the afternoons Alice manages on her own. Alice also uses a laptop to do most of her writing because she struggles a lot with pencil control. But her reading is fantastic; she has completed the reading scheme and is at the same level of reading as everyone else in her class.

Living with a little sister who has Down’s has its ups and downs. Alice is a great member of our family and she always lights up any room. She cheers us up and brings a positive side into everything. But it’s not all plain sailing. Alice needs extra help with things that we take for granted. Like when she was learning to get dressed, or put her shoes on. She still needs help doing her hair or brushing her teeth, but she’s getting there. And the fact that Alice doesn’t learn to do things as easily as we do makes it so much more of an achievement, so much more fulfilling when she does finally get it.

Alice has a love for music; she’s forever dancing, singing and playing the drums. She is better at using the computer than me, and loves telling us what to do. So although Alice does struggle with some things there are always things that she is very good at.

I know that some people think that Down’s is a disease, a bad thing, something that makes people suffer. But it’s not like that at all. Alice doesn’t suffer; she’s one of the happiest little girls I know. The fact that Alice has Down’s doesn’t change who she is, she’s still Alice, still my baby sister, even if Alice couldn’t walk properly, or talk properly or feed herself she’d always be Alice, our little star.

As for the future, Alice is going to have more struggles in school as the rest of her class get on with the harder work, but I know that she’ll manage, she just needs the right help.

When Alice is an adult I very much expect she will be able to live at least semi – independently, but if for any reason she couldn’t I know that Beckie, Jack or I would all love to live with her, she’d make life a lot more fun!

Kate Saunders

Comments

[Qadoshyah]

Very well written, Kate! I am 19 and have a 2 1/2 year old brother with DS. He brings so much joy to our family!! What a huge blessing he is!

[Beck y]

Kate,
I didn't realise you had written this article, it really is a beautiful piece of writing! You should be so proud of Alice (and i know you are!)
Lots of Love
Becky xxx

[Beck y]

Kate,
I didn't realise you had written this article, it really is a beautiful piece of writing! You should be so proud of Alice (and i know you are!)
Lots of Love
Becky xxx

[Keldene McNulty]

Hi Alice,
I'm 16 too and have a 10 year old sister who has downs. Like you say mostly it isnt that big a deal. She likes the same kind of things as other kids, dancing, mcdonalds, drawing,(somtimes on the wall and stairs)and stealing my makeup.
It does frustrate me how she can manipulate mum and dad into thinking she's a fragile little flower then grins at me(behind their back).
It still amazes me how people use the same old descriptives to describe down syndrome ie they are very cuddly, placid etc My little sister is one of the least placid, people I know.
Still life can never be dull with our Kaitlin around

[millay]

what a fantastic piece of writing Kate - i really enjoyed reading it and as my little 6week old baby boy has Downs i know that his two older sisters (4 and 2.5)will love their brother as much as you love your sister.

[India]

Hello Oliver, and thanks for writing in!

[Oliver]

My mum has just shown me this. I am 10 and I have a sister with Downs syndrome, who is 8 aswell, her name is Emily. Alice sounds exactly like Emily always dancing and singing! Emily has lots of friends at school and goes to Brownies Gym and swimming. She needs quite alot of help sometimes but can manage most things on her own eventually.
I am glad that I have a sister with downs syndrome because she makes me laugh and I would not like her any different. It is not something that bothers me or worries me.

[Sharon]

What a fantastic piece of writing Kate, it made me cry tears of joy to know that you love your sister so unconditionally, you have a very mature head on your shoulders.

I too have a child with special needs (autism) and a 16 year old son who, though not as articulate as yourself, loves his brother unconditionally, though he would hate to admit it as freely as you have. But what he does demonstrate, is an ability to empathise with special needs children and is harbouring an ambition to make a career within a special needs school environment by teaching or speech therapy.

I worry what will become of my special needs son when I am not around to care for him, and feel guilty that my eldest son will one day have the responsibility for him, but when I read your article, I know that I have no worries, blood will always be thicker than water and the love of a sibling will never wane, regardless of the disability. You give me such faith and I hope others too, knowing that love and understanding of their brother or sister will always come through.

Thank you Kate.

[Natalie Cox]

Kate, what a wonderful, well written article. You are so very proud of your sister, and rightly so. I too hope that my two eldest sons will have the same enthusiasm as they do now, like you do for their younger brother Jake 2 who like Alice has Down's Syndrome.

There's something very special about a child with Down's Syndrome that only those lucky enough to be close enough to them can appreciate.

Thank you for your story.

[David]

I'm sure, Kate, in the years to come your beautiful sister Alice will face many a struggle - some, no doubt, a lot pleasanter then others. But - and it's an important but - with yourself and Beckie and Jack to look out for her at least she'll not face whatever life throws at her alone. So you do that: Look out for your sister Alice. And cherish her.

[Michelle]

I have a daughter with Down syndrome and just wanted to say what a pleasure it was to read this! There are so many negatives out there, and a lot of people think having a child with Ds will affect their other children negatively, but it's just not so as this author proves!

[viv]

As the mother of a 4 year old child with special needs this made me feel quite choked, especially the bit where Kate says she or one of her siblings would love to live with Alice in the future if she couldn't live independently. I only hope my now 6 month old daughter grows up to feel so positive about her older sister.

[Natascha]

It is so lovely to read how supportive you are of your sister Alice. She is very lucky to have you in her corner.

[Katharina]

Thank you, Kate, it's so refreshing to read an article from a sibling's perspective and especially when it is as positive as yours! I think Alice is very lucky to have you and your siblings around.