Having a sibling with a disability 

Sisters Charlotte (19) and Chloe (9) describe what it's like growing up with disabled sister Sophie (15), who has cerebral palsy. An expert explains what the most common problems are that children who grow up with a disabled family member face. She talks about their understanding the disability, dealing with it outside the family and the feeling some kids have of not getting enough attention from their parents.

Disability and social care

Transcript of Having a sibling with a disability

(girl) Just think they were on Facebook all day and now back to school.

I think I had to grow up quite quickly because Sophie came along and then...

I didn't have to be serious but I didn't get time after that...

Not as much quality time with my mum and dad to be a kid

and go out, maybe to the seaside, or anything like that.

I think sometimes I missed out on that little bit of a childhood.

I think when I was younger I felt like I had to help.

Mum and Dad didn't tell me I had to. I just felt like I had to.

I think I just automatically did it.

With Chloe growing up with it, she understood it more, so she accepted it.

There's about half a million children

who grow up with a disabled brother or sister in the UK.

And the main things that affect those children are,

their parents are very, very busy -

they have a disabled child, lots of things they have to deal with -

and they get less attention on the whole.

They also find it very difficult to understand the disability.

"Why does my brother or sister behave the way they do?"

"Why are they not able to talk the same as other children?"

"Why are they in a wheelchair?" They want to know answers to these questions.

Sometimes Mum would come to school with Sophie and pick me up.

A lot of people asked questions. I found that hard.

I thought people were having a dig or... When people stared, I hated it.

They didn't understand what it was like to have a disabled sister

or someone with a disability in the family.

Do your friends ask questions?

Yes, because when I took that disabled thing in,

when I showed that in assembly,

some people had their hands up and started asking questions.

I found it a bit difficult because some of them I didn't really know.

- You didn't know the answers? - No.

There are some difficult situations that arise

from growing up as a sibling of a disabled child.

If you have a brother or sister who's in hospital a lot,

you miss your mum or dad when they stay with them, and your brother or sister,

you may be worried about what's going to happen,

particularly if your brother or sister is having an operation.

(Charlotte) She had scoliosis of the spine

so her spine was going into an S shape.

So she was in Leeds General having her spine straightened.

She had rods put in.

It was like two operations, so Mum was up there with Sophie all the time.

So we only really saw my mum maybe once or twice at the beginning

when she came home for clothes and then when Sophie left hospital.

(Chloe) It was a bit difficult for me and Charlotte

because we didn't really see our mum.

(Charlotte) Did you miss Mum and Sophie?

Yes, especially Sophie because I didn't really see her

and she had a disability. She's a special sister.

Siblings are children and they want their fair share of time and attention

and they can feel they don't really have the right sometimes to ask for that.

So it is a conflicting feeling for siblings.

(Charlotte) The worst thing is, as awful as it sounds,

and even though I was 18 at the time,

it was like, "Sophie's getting all the attention."

You do kind of feel a bit like, "Oh, well, why is it always..."

"Why did Mum have to be there with Sophie?" And it's hard at times.

Then when I saw Sophie you just realise

that Sophie needed Mum there at the time.

Siblings tend to find that their needs have to wait

until the disabled child has had their needs sorted out first.

And one of the things we talk to parents about is making sure that siblings

every day get a little bit of time doing something they would like to do.

Little and often is better than maybe just going for a big chunk of time

on a Saturday once a fortnight

because children who are young need that very, very regular reassurance

and contact with parents

to know that they're special and that little bit of time is just for them.

Do you sometimes wish that you had time with Mum and Dad

without a disabled sister?

Do you feel like you're left out?

Sometimes.

But... Sometimes, yes.

Parents and siblings may be coping with a mixture of difficult emotions.

They'll also be picking up on their parents' emotional state.

Siblings absorb those feelings

and one of the things we feel really, really helps siblings with that

is for parents to talk to them about those feelings.

I used to dislike talking about things like that with my mum and dad.

I used to think it would upset them or worry them. I held a lot in.

Parents can contact Sibs,

who run specific parenting sessions on supporting siblings over the phone,

so if parents have got a particular issue they want help with,

that's something that we can offer.

We also encourage parents to contact their local healthcare professional

or other professional working with the family

to find out if there's a local sibling group or service near them.

It's like a disability club.

You feel like you can talk to it any time you want

when you go there.

And any time you feel like you want to say stuff

that you can't say at home or to your sister

because you think it might upset her,

you can say it at the club because they know how you feel

because they might feel it as well, the same feeling, when they're at home.

(Charlotte) I think I resented Sophie.

It was like, "Now you've come along and I don't get anything."

She'd taken all this attention just because she was disabled.

Going to Sibs,

I realised I was so selfish about it and I just thought about me

and I didn't realise that I had this little sister

who was going to find life so difficult, and all the operations and everything.

Going to Sibs, it makes you realise...

..just she's special.

Siblings have particular issues that they need support with

at different times throughout their childhood,

and if parents and professionals can give that support to siblings

it means siblings are able to have a positive experience

of growing up with their disabled brother or sister.

After a few times at Sibs, I started to appreciate Sophie so much more.

I realised I wasn't the only one that this was happening to

and the only one who was hard done by or anything like that.

It wasn't Sophie's fault that she was like that.

It helped me so much. I think it's such a great thing.

(Chloe) Sometimes I just feel like I want

a disabled sister but I don't know why.

- (Charlotte) You don't know why? - Yes.

- Is it because you love Sophie? - Yes, and she's special to me.

I don't know what else is special to me except Sophie and my family.

- That includes you as well. - Thanks!

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