Monday, 16 February 2009

Stinker, Sharer, Sibling, Carer?

There's an interesting conversation going on in one of the forums I frequent, about whether siblings of disabled children should be expected to be carers too.

I've spoken to parents on both sides of the debate. Some who believe that the non-disabled child should not be affected in any way by having a disabled sibling, must be free to live their own lives, must never be asked to carry out any caring task whatsoever. And some who believe that's the luck of the draw, we're all family so we're in this together, now please wipe your sister's chin, we're going out.

Little Fish is a sibling. She's also a disabled child, but for the purposes of our debate, she is the more able sibling. I appreciate that she is only three at the moment, and that an awful lot of three year olds enjoy helping Mummy with whatever Mummy is doing. But Little Fish can operate Mog's feed pump, come and find me when Mog is having a seizure, pick up the things Mog drops, push her from room to room, and generally carry out a long list of little things which make Mog's life better and mine easier.

Does this make her a carer? Or does this make her a sister? If Little Fish were the older child, and if Mog were the baby, all this would be pretty normal wouldn't it? Big sisters have been called upon to wipe mouths, push buggies, burp babies for as long as there have been big sisters and small people. So is it the age thing which makes this different? Or the fact that Mog will not one day wake up able to do all these things for herself?

I do know this, that Little Fish would be devastated if I pushed her away every time Mog needed help. They would both miss each other, if I started showering Mog solo, rather than allowing Little Fish to lather Mog's hair for her. And Mog would be pretty miffed if I started racing through all her care needs, so that I could post her back into the corner to get on with the real business of raising my more able daughter.

Little Fish's dolls all have disabilities. You wouldn't know it to look at them, you wouldn't know it if you were to buy them in the shop either. But once they come into this house, they become disabled. They all seem to need the regular baby related things; feeding, changing, cuddling, stripping naked and never being allowed to wear clothes. But they also need to be hoisted regularly. They finish their bottles (which may be fed via mouth, nose, or stomach), and then they are burped - like this
I don't force Little Fish into a caring role. But she is far, far happier when she is able to share in Mog's life. And realistically, that means sharing Mog's care. Or are there non-caring tasks a sibling can take on? If and when Little Fish learns to read, when she reads a story to her big sister, who will be the carer then? Will it be Little Fish, entertaining her poor sister? Or will it be Mog, patiently listening to her little sister and refraining from kicking her when she stumbles over the words? Or will that be a normal sister:sister thing? When Little Fish puts Mog's music on, is she being a carer? Or a sister? Or using Mog as an excuse to play her own choice of music?

I'm not sure it's possible to separate out "care" from "living". We live our life, and a large part of that can revolve around Mog's care and nursing needs. To exclude Little Fish from those areas of Mog's life would be to shut her away from her sister, not good for either girl. But at the same time, to place expectations on Little Fish that she will always be responsible for doing these things for her sister would be unfair to both girls too.

I remember, as a young child, changing my baby brother's nappies. I don't ever remember being told to do it, but I remember offering and being allowed to help. As an older child, I remember babysitting my younger brothers. Did that make me into their carer, childminder, nanny? Or just their big sister? Why is that different if the less able child is less able due to disability, rather than age?

I also remember asking not to be the boys' after school sitter any more, as I didn't want the responsibility. And I remember that request being honoured by my parents. I think maybe that's the key - I could do it, I was capable of doing it, I knew how to keep the boys safe and what to cook for tea, but I didn't actually have to do that on a regular basis unless I chose to do so. Perhaps that's the same for the siblings in this scenario - if your brother or sister has epilepsy, once you are old enough to know what to do, you should probably know where the emergency medications are kept and how to call the ambulance, but you possibly shouldn't be placed in a situation where you might have to do so, unless you are happy to have that responsibility?

I do know this, that shutting the non-disabled child out, not talking about things in front of them, not including them in the disabled child's life, does not protect the child from worries and concerns about their brother or sister. Children are not stupid, they will pick up on the thoughts and feelings of the adults around them. Including the child, all the children, may mean having some painful conversations. But the conversations are important.

Meanwhile, and on an entirely different note, take one cat with a sore head. Add this collar:
And end up with this:
One even sorer head where the cat has repeatedly cannoned into every piece of furniture in the house, in reverse, until successfully wedging his head between two chair legs in order to force the collar back off over his head, neatly removing the scab as he did so. Trying again will result in a larger wound in an even shorter time, and trying again will result in the cat vomiting in fear before taking off up the curtains.

Meanwhile that caring little sister will be convinced that you are torturing the cat (and to be fair, she was probably right), and will chase you around the house as you chase the cat, sobbing "No Mummy NO do that" and grabbing your legs to stop you moving at all.

The steroids have worn off, and Goway is stressed and itchy. We took him back to the vet tonight, to learn that on top of the asthma and excema, he now has a heart condition too. A big steroid injection to help with the itching, a big antibiotic injection to help with the weeping crustiness the scratching has caused, a large collar which the cat will refuse to wear, and the threat promise of new heart pills once the cat has recovered from the indignity of all the injections.

I just hope this lot works.


Doorless said...

see breing allowed to help as being a normal sister sister relationship. Now if said child was made to be a help mate that is different. LF has demonstrated she clearly feels needed and loves her sister and to take that away from her would be detrimental to her development.
OW ! Poor goway Hope he is better soon.

Anonymous said...

Oh the situations we sometimes face as parents with special needs kids. I guess I would say that whatever is best for the family and their circumstances is what is right for one family--and maybe something else is best for another.
We have always included the girls in the care of our special needs children. When they were younger -they accepted Alissa as she is --didn't think anything strange about having a special needs sister and were always willing to help when needed. As we have added several special needs foster/adopted children the girls have all been willing to help with the kids and care for them. They've loved them and accept them for who they are.
Now that they are older and going off on their
own we encourage them to do what the Lord has called them to do. Yes we know that in the future(when we are not able to care for the kids) we might need to be looking for a group home or family living situation for our special needs kids unless one of the girls (there is 3 of them)--decides that that is what the Lord wants her to do.
By the way our 8 year old loves to help care for Autumn--can suction if needed and take her off the vent and hook her up to her O2.etc. Not that we encourage a lot of that involved care--but she knows what her sister needs and loves to help care for her and play with her.Debra

Anonymous said...

Very good thought provoking post! Something I need to mull over a bit more.

Bekah can care for Joshua - tube feeds / diaper changes / meds - provided they are sorted / etc. She does/has done all of the above, but not on a regular basis. She is also a great entertainer for him.

Kei is awesome with Josh, but not skilled yet in the above mentioned list... mostly because of age and the fact that Josh is just about as big as she is. Kei is beyond happy when she gets to snuggle with Josh in the morning and/or help with his morning routine. She used to take (drag ?) him out of bed 8-/ but we had to put a stop to that for both of their safety.

Finding a balance that allows the girls to be themselves while still being a family with a special needs child is a challenge. I don't want to force them into a carer role, but I don't want to take away their ability to help their little brother either. Helping each other is part of what a family is all about.

I do know that allowing them to help is giving them a more caring outlook on life. I have had people remark how impressed that the girls are not afraid of special needs individuals. Part of it is they don't see it as so unusual so they are not afraid to reach out.



Elinor said...

Very interesting post... Jordan doesn't have the degree of physical care needs that Mog does but does relate emotionally to his older sister as though she was me. They also still have the whole sibling rivalry thing going as well. Both states are second nature to her now, I think.

Sara x said...

I can only speak from experience and the way Livvy has affected our family. I want to use the word family here because this is what we are, ok, Livvy had more needs than most, but who else would constantly put up with Kennedy's singing. No, jesting aside, it is a fine line i fear we have to tread.I dont think its as much about the amount of caring as about the about of attention each child needs. My girls knew that if they needed private or special time they would get it.

Not having Livvy in our lives has left a big hole for the children too, they tell me their lives were made more special for having Livvy as their sister. That they are better people for it. I think Livvy has made us all better people.


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