My Little Big Sister: The Lessons Amy Never Knew She Taught Me

If you know Amy, you’ll know Amy.

She’s bubbly. She’s loud. She’s kind, sensitive and big-hearted, and she is quite possibly the biggest social butterfly I know. In fact, I’m pretty sure my sister has a better social life than I do.

Mention her name and you’ll usually be met with, “Oh yes, we know Amy!”

She loves to sing, she loves to dance and she’s always up for a party. She’ll be the first one on the dance floor and the last one to leave it. She can dance me under the table and that takes some doing!

Then there are the one-liners.

Amy has this incredible ability to remember the funniest quotes and bring them out at exactly the right moment, stopping everyone in their tracks before having us all in stitches.

Put a song on and she’ll remember EVERY lyric, word for word. I genuinely don’t know how she does it.

At the moment, she’s very into old episodes of Coronation Street. This is quite the progression from our childhood, when it was Barney the Dinosaur on repeat. And when I say repeat, I mean repeat. Thanks to Amy, I could probably still give you a full performance of the Barney songs now.

Amy is also 37 years old and has a learning disability caused by a duplicated portion on the short arm of chromosome 8.

She needs 1:1 care. She needs help washing, dressing and brushing her teeth. Her meals need to be prepared for her and she can’t safely go out alone. Although she’s physically able to walk, she doesn’t understand dangers such as roads and traffic, she has to be in a routine and she struggles with any sort of medical appointments (doctors, dentist etc.)

But those things are only one part of Amy.

First and foremost, she’s my sister.

My Little Big Sister

When we were children, I think I always knew Amy was different to me, but I didn’t understand the full scale of it.

She was just Amy.

We played together. We laughed together. We danced together. At Christmas we’d play in the snow and build snowmen.

I knew she needed help with things I didn’t, but that never made me think I should treat her differently. We were simply sisters.

I used to call her my little big sister.

There’s an old family video that captures our relationship perfectly.

We’re having tea and even though Amy could feed herself, little me occasionally picks up her spoon and starts feeding her. She just looks into my eyes and goes along with it.

Then pudding arrives.

A bag of sweets.

Now, I was absolutely terrible at sharing. So I’d carefully share them out, one for Amy… two for me. One for Amy… two for me.

She never complained.

In fact, if we got down to the very last sweet, Amy would offer it to me and that’s where she was very much my big sister.

Even when she had very little, Amy would share it with me.

When I Realised Other People Saw Amy Differently

I can’t remember one big moment when somebody explained to me that our family was different.

I think I realised through other people.

As we got older, I started noticing how children reacted to Amy. They’d stare, whisper, laugh or make jokes.

I couldn’t understand it.

Because they were laughing at my amazing sister.

To them, Amy was “different”.

To me, she was my Sister. She was home.

I remember crying about it in secret. Not because I was embarrassed by Amy, never because I was embarrassed by her, but because I was heartbroken that people could treat somebody I loved so much that way.

Holidays could be particularly difficult.

You know when you’re a child on holiday and you make friends around the swimming pool?

Sometimes I didn’t.

Children would notice Amy and they’d whisper or laugh. Amy always wanted to join in, so sometimes they’d turn it into a game. Swimming away from her because they knew she couldn’t keep up.

I hated it.

Occasionally I’d find that one child who didn’t care that Amy was different. Someone who would play with us, include her and see what I saw in her.

It was rarely a whole group, but one kind person was enough.

And looking back, I think that’s where one of Amy’s biggest lessons began.

I started judging people’s character by the way they treated my sister.

If you couldn’t treat Amy with kindness and respect, I wasn’t interested.

Then My Protectiveness Got Louder

As I got older, that protectiveness became a little less quiet. Okay… a LOT less quiet.

I started noticing the adults staring too, sometimes Mum would be trying to deal with Amy having a tantrum in public and people would stand and watch.

There were days when I couldn’t cope with all those eyes. I’d walk ahead because it was too much.

Other days, teenage me was ready for battle.

I’d stand beside Mum and loudly say something along the lines of:

“Mum, do they want a picture or something?”

That usually did the trick.

Looking back now, I understand that a lot of those people simply didn’t understand what they were seeing, but that’s also one of the greatest things Amy has taught me:

Not understanding something doesn’t give you the right to judge it.

You don’t know somebody’s story just by looking at them.

It Wasn’t Always Easy

I don’t want to paint our childhood as though having a sibling with a learning disability was always easy.

It wasn’t.

As Amy got older, her disability became more apparent and there were difficult periods.

She could have severe tantrums and sometimes become aggressive. She could hit and lash out.

I remember being a teenager in my bedroom while Mum was trying to shower Amy. I’d hear Amy screaming and hitting out and it was painful to listen to, not just because of Amy, but because I knew what Mum was going through.

I saw how much caring for Amy could take out of her.

And so did Dad.

Dad loved Amy fiercely, and if Amy needed someone in her corner, he was there. If a strongly worded email was required, Dad was your guy.

Local authority battles, PCP applications, EHCP reports, funding. Whatever it was, if Amy needed it, Dad would fight for it. He would go to the ends of the earth to make sure her needs were recognised and that she got the support she deserved.

Honestly, watch out if you stood between Dad and something Amy needed.

My dad is a warrior.

And then I saw Mum and Dad get up the next morning and do it all over again,
they loved Amy unconditionally. Every single day.

I don’t think I understood at the time quite how much I was learning from watching them both.

There was another occasion on holiday in France when we’d parked in a disabled parking space using Amy’s blue badge.

People became angry because Amy could walk.

They shouted at Mum and Dad. They gave us filthy looks.

Their assumption was simple: if you’re disabled enough to have a blue badge, you should be in a wheelchair.

Mum and Dad brushed it off like it was nothing. Meanwhile, I was probably internally raging.

But my Mum and Dad had already learned something that has taken me much longer to understand:

Stuff what people think.

They didn’t know Amy.

They didn’t know our family.

They didn’t know our story.

And if someone hasn’t learned the basic kindness of not judging another person before knowing their circumstances, that’s on them.

How sad for them.

The Lessons I Didn’t Know I Was Learning

For years, I didn’t realise quite how much being Amy’s sister had shaped me. I just thought I was me, But looking back, I can see her fingerprints everywhere.

I don’t stare at somebody because they’re different.

I don’t assume I know their circumstances.

If I don’t understand something, I try to approach it with understanding rather than confusion or judgement, and I have always stood up for the little guy.

When I was at high school, there was a boy with quite severe autism who was bullied badly. People laughed at him. They ignored him. They’d make fun of the way he behaved.

I always made sure I said hello.

I didn’t care if that meant people laughed at me too.

Because sometimes somebody doesn’t need you to change the whole world for them.

Sometimes they just need one person to make them feel included.

I knew what that one person could mean.

I’d spent my childhood hoping to find that one child around the swimming pool who would look past Amy’s differences and simply play with us.

Maybe without realising it, Amy had taught me to become that person for somebody else.

Then I Became a Mum

Before becoming a mum, I genuinely thought I wasn’t a very patient person…Turns out I’ve got tonnes of it!

Having my son, Jasper, has made me understand parts of my childhood, and my mum, in a completely different way.

So many things Jasper does remind me of things Amy used to do.

If Jasper has a meltdown in public now, I’m surprisingly chilled about it.

People stare?

Fine.

It doesn’t faze me.

And that’s when I realised:

I’ve inherited my mum’s superpower.

People don’t know my child. They don’t know what’s happened that day. They don’t know our story. Their judgement doesn’t require my attention.

It took becoming a mother for me to realise just how much patience I’d learned from growing up with Amy, and just how much I’d learned from watching Mum love and care for her.

But becoming Jasper’s mum gave me an even bigger gift.

I got to watch Amy become Auntie Amy.

Auntie Amy

Amy has always adored babies and children, and if I’m completely truthful, that has sometimes broken my heart.

I knew that Amy would never experience motherhood herself, despite how much she loves children.

But I always knew one thing, she was going to make an incredible auntie.

When Jasper was born, Amy loved him instantly and completely.

I remember seeing my sister holding my baby, with Mum helping her, It hit me like lightning.

Until that moment, I hadn’t realised how badly I’d wanted to see it.

My sister holding my son, It was beautiful.

And from the beginning, Jasper seemed to feel it too, even as a baby, he’d light up around her.

Now I’m old news when Auntie Amy is around!

I’ve even discovered she’s excellent bribery.

“Come on Jasper, we need to have a wash and get ready so we can go and see Auntie Amy!”

Suddenly he’s racing upstairs.

He cuddles her. He jumps on her. He makes her laugh.

But then I started noticing something else.

Something that stopped me in my tracks.

I Saw Myself

Just like I somehow knew when I was little, Jasper seems to know too. Amy being Amy is completely normal to him, But at the same time, he seems instinctively aware that sometimes Auntie Amy needs a little extra help.

He’ll grab her hand.

“Come on Amy, let’s go have tea.”

And he’ll lead her to the table.

Or:

“Come on Amy, let’s do this.”

And watching him, I see myself. That little girl spoon-feeding her big sister at the dinner table all those years ago.

Jasper has met Amy’s friends too.

Her friend Tom has Down syndrome, and Jasper doesn’t hesitate. He’ll walk straight over, take his hand and say:

“Hiya Tom.”

No staring.

No confusion.

No judgement.

Just Jasper…and then something happened at nursery that brought everything full circle.

Amy’s Greatest Gift

One day I picked Jasper up from nursery and he had been given a certificate. I asked what it was for, they told me it was for being such a good friend.

Of course I was proud.

But then they explained why.

There was another child at nursery who had additional needs. They told me Jasper included her in everything.

When she struggled, he helped her.

He would lead her to the tables.

He made sure she was included.

And suddenly I saw it.

The beautiful lesson Amy had taught me was now being taught to my son.

He’s only three, he doesn’t know he’s learning it, he doesn’t realise how important it is.

Just like I didn’t.

He’s simply growing up loving Auntie Amy.

And through loving her, he’s learning that different isn’t something to fear.

He’s learning to include.

He’s learning to help without making somebody feel lesser.

He’s learning patience.

He’s learning empathy.

He’s learning kindness.

What an incredible head start in life that is.

I’m unbelievably proud of the little boy he’s becoming.

But I’m also unbelievably thankful to my sister.

Because Amy gave me that gift first.

And now she’s giving it to my son.

If Only I Could Tell You

Amy, if I could sit down with you and know that you completely understood everything I wanted to say, firstly I’d say I’m sorry.

I’m sorry for the times I didn’t have enough patience.

I’m sorry for the times I became distant when things were hard.

But I hope somehow you know how much I love you.

All of you.

The good days and the difficult ones.

I didn’t always notice the lessons you were teaching me. In fact, some of them took me years to understand.

Some took becoming a mother myself.

But I’d thank you.

I’d thank you for teaching me how to love unconditionally.

For teaching me to fight for what’s right.

For teaching me not to judge somebody whose story I don’t understand.

For teaching me patience when I don’t understand.

For teaching me that sometimes being the one person who says hello can matter.

And I’d tell you how incredibly proud I am to be your sister.

But my biggest thank you would be for the way you love my little boy.

Because now I get to watch you teach him the same lessons you taught me.

Jasper won’t realise it yet.

I didn’t either.

But one day, I think he will.

One day he’ll understand that some of the kindness, patience and empathy he carries through life began with his Auntie Amy.

And I hope he grows into an incredible young man because of those lessons.

I wish I could explain to you just how special that makes you.

How lucky we are to have you.

And how lucky I am that, out of everybody in this world, I got to call you my little big sister.

You helped make me who I am.

And now I get the privilege of watching you help shape my son too.

What a gift.

Thank you, Amy.

Written by Becky Wade