Sunday, June 19, 2011


For some reason I have been thinking about the issue of siblings recently.  Do you worry about the effects of being a 'sibling' on your children?  Do your 'typically developing' children have a good relationship with their 'unique' sibling?  Do you think being a 'sibling' is having a positive (or negative) effect on their development?  Do you do anything to specifically help the siblings cope with their brother or sister who has a disability?

I'm not overly worried about Emma's relationship with Ashlea, or with how she feels about having a sibling with a disability.  She seems to understand that Ashlea has a disability and that it needs to be accommodated.  She has even been known to take me to task if I get frustrated with Ashlea and will tell me "MUM, Ashlea's DISABLED.  She can't help it" if I get impatient.  At school she told off one of her friends who was teasing a girl in a wheelchair, by telling him "She can't help it, she's disabled.  Don't tease her".  While we obviously need to work on using more inclusive language, I love that Emma sticks up for Ashlea and other children who have a disability.  She is becoming a little advocate and has even been known to (loudly) announce "Where's the ramp?" when we've arrived somewhere not very accessible.  I love that she is growing up expecting that there should be disabled access everywhere we go.  If only everyone thought like that.  I love that Emma just accepts Ashlea - and others with a disability - just as they are.

Audrey on the other hand I'm not so sure about.  She isn't as close to Ashlea as Emma is, and really doesn't seem that interested in her at all.  If she thinks Ashlea is going to get hurt she will freak out and start screaming for me to come and help, otherwise it would be hard to tell how she felt about her.  I don't know whether to be concerned, or whether this dynamic has just grown out of the reality that Ashlea was very non-interactive for a very long time, so Audrey just naturally followed after Emma.  I feel like in the long term though - especially at school - it will be more of a burden on Audrey than Emma.  Audrey and Ashlea are twins.  Whenever Ashlea draws attention to herself at school Audrey is going to be associated with that - whether good or bad.  I am hoping it is a long way off, but I am sure there will come a day when she gets teased for having a sister with a disability.

I am glad that Emma and Audrey are close - and that they have a 'regular' sibling relationship with all its regular ups and downs.

While I was thinking about this issue I asked the girls what they thought of having a sister with a disability.  The following answers are exact quotes.

Emma's answer:
I think it's special, because there's not that many people that are disabled.  And because we can do lots of special things that you can only do if you have disabled people - like the Lord Mayors Picnic and going to Bear Cottage, and going to the deaf and blind children's thing (she means RIDBC), and the chocolate fountain party (Cerebral Palsy Alliance Christmas party).  I love her and I think its nice having her in our family.  But its hard because she cries when her (TV) show finishes - like the Night Garden and its hard because Mummy has to wipe her poos and she can't go to the toilet by herself.  I like her because she's special and I play games with her.
Audrey's answer:
I don't like it when Ashlea screams because she screams too loud.   

Audrey is hard to get an answer out of, so I decided to ask some specific questions.

What is it like having Ashlea at preschool?
Nice because Mrs Cook is with Ashlea who helps her. 
Whats a good thing about having Ashlea as a sister?
I don't know 
Do you like going to speech therapy / OT / physiotherapy?  Is that a good thing or a bad thing?
A good thing.
Finally I asked them both "Do you think it is a good thing or a bad thing having a sister with a disability?  
Emma:  A good thing.  I love her.  She's so cute.
Audrey:  A good thing.
Although when pressed I asked if they would rather Ashlea have a disability or be like 'just like them':
Audrey:   Be like us.
Emma:   Be just like she is. 

That probably sums it up.  You can see why I am a little worried about Audrey.  Obviously it is normal for the siblings to wish their brother or sister wasn't disabled, but I also love that Emma just loves Ashlea as she is.  If you ask her how she feels about Ashlea she will tell you that she just loves her.

I think I would like both the girls to get involved in some sibling groups as they get older.  I haven't heard of any for younger kids like mine, but if you know of some please let me know. The CPA are currently running a Masterchef themed group for older kids - mine are too young to participate but would LOVE that as they are currently obsessed with the show.

We are slowly making some 'real life' friends with siblings too which is good - and while I think of it - school holidays are coming up.  Who is free to come over for morning tea and a bit of informal sibling (and Mummy) interaction?


Anonymous said...

Hi! I enjoy reading your blogs which I came to via EB. I am a teacher of 5 year olds and they seem to want everyone to be like them. They were wondering the other day why all the black people were not white like them. However, in teaching Year 1 they are much more able to celebrate difference. It may be just a developmental thing. It may be worth asking someone who has expertise in this area.

Anonymous said...

Sorry I forgot to say my name is Megan.

Big brother, Little sister. said...

Alison what a wonderful post , makes me smile and cry reading it. I really wish we could come over for a play! I think your post just really highlights that every sibling will be different and I would be keen to hear what Ashlea thinks too! Pep thinks Cooper is some sort of prince but he also thinks she is a princess and soon we will have 3 against 2! Lol much love to you xo

Kim said...

I too worry about the sibling issue, and that is without the added worry of a disabled child in the mix. Sean has changed so much since T was born. Is is just a natural phase or is it sibling rivalry. Probably both. N and S both love T to bits but S has most definitely become a classic middle child, despite all our efforts. So I think the sibling issue is always one we think about no matter what the family circumstances or birth order etc. We all have hopes, fears, questions etc. And just so you know, we most definitely will be coming to play!!! Oh and these pics of the girls are just gorgeous!

Anonymous said...

maybe to audrey, ashlea just 'is'. to ask audrey about ashlea's differences might be the same as asking 'why do you breathe.....'

Beatrice said...

As a disclaimer, I don't know your family personally and my only goal is to offer a different perspective. I might be completely wrong and am only going from your blog posts, while you live with your daughters and obviously know them way better than any stranger on the Internet does! I'm basing my message on my personal experience and it might not apply to your family at all. With that being said, here goes:

I think the difference might be that Emma has more outlets and moments away from Ashlea's disabilities (and I don't mean it in a negative way at all!). She goes to school where she doesn't HAVE to think about Ashlea if she doesn't want to, she has her own friends and she is the oldest child, which I believe comes with a certain sense of responsibility and differentiates her from her siblings.

Audrey, on the other hand, lives with Ashlea, goes to school with Ashlea (albeit on different days from what I understand, but still), is twins with Ashlea, etc. You already mentioned that she isn't getting invited to birthday parties because people feel guilty about not inviting Ashlea.. In short, she seems to be more directly affected by Ashlea's disabilities, AND she doesn't have any outlet that lets her be more than "Ashlea's sister"; she doesn't have anything to make her feel special like Emma does. It's hard, especially for a preschooler, to always be required to accept your sister and be kind to her when you might not feel you're getting the same attention.

Again I am basing my analysis on my personal experience, which might be completely different from yours! I think your outlook on life and the way you tackle the obstacles you encounter are amazing. Besides, the pictures of your girls are gorgeous! :)

Lacey said...

I think that is strange simply because they are twins, and twins usually have a strong bond. Although you have to pay more attention to the other siblings, because a special needs kid takes all the time you have! I do think my boys are much better kids since having Jax. They are more compassionate, and just plain sweeter!

Alison said...

Thanks everyone!
Megan - I think partly it is because Audrey is younger, and anonymous I think it is partly because this is just 'how it is', but I think Beatrice has hit the nail on the head - Emma has far more breaks away from Ashlea, whereas Audrey as her twin is with her all the time. I'm hoping that once Audrey gets too school and in a different class with her own friends that she will have some of the independence Emma does.

Bron - it must be a different dynamic with Cooper as the oldest - he definitely leads the way.

Kim - you guys are welcome any time!

Lacey - it does make me sad that my girls haven't had the opportunity to have that twin bond. Your boys are definitely awesome big brothers.

Missy said...

OH I totally worry about siblings all the time and I just don't know what the answer is or how to fix it. I do worry about siblings and the effect that disability has on them.

I hated having a disabled sibling especially when I was a teenager, but mine was thrust upon us as a result of a car accident. Whereas my kiddies will grow up with their sibling and not know any better. I guess MM talks and acts just like her siblings and hers is far more a physical disability.
But I do worry about them being teased later because of it.

I am sure I over compensate for MM's disability in some way and probably sometimes harder on them because of it too :( but I am hoping that they don't really "see" her disability and just love her for her)

Sarah said...

Emily does get along very well with V but has moments that she wishes V could do more than she does and she also gets very frustrated by V and her meltdowns.

Susan, Mum to Molly said...

As you know, my Miss 8 is a bit of a Sibs-groupie...

She has participated in siblings programs by CPA/TSC, ADHC, Koorana, Pathways and Karobran (all early intervention services). She really enjoys them and gets a lot out of them.

The other one to keep in mind for Emma and Audrey, especially around the transplant, is KidsXpress ( - which is not disability-specific, but is completely awesome.

I too agree with Beatrice re your girls - and the other thing that struck me is to bear in mind that Audrey is a couple of years younger than Emma, and so when she is Emma's age she may feel differently too (emotions & understanding matured, etc...)

Definitely count us in for a school hols play! Very glad you are getting a holiday at Bear Cottage too!

ferfischer said...

You know - it's an interesting dynamic. As much as the pictures on my blog show otherwise, I think my kids are similar to yours. I have noticed changes in Penny's behavior as she's gotten older, but still Max seems more into caring and protecting and taking care of Cici than Penny was. Penny would largely ignore Cici. As she's gotten older, she's started to see the positive reaction she gets from being nice to Cici, and therefore is doing it more. She's starting to be more into it now, and including her. BUT, Penny and Max go to a different school and they BOTH have a lot of time away from Cici. That may help, actually. But Cici is different than Ashlea, she doesn't get a lot out of a lot of things, so we often separate for activities. Personally, I don't think my girls have any sort of twin bond at all. If they did, I don't even know what it would look like.