Friday, February 24, 2012

Pillow: A sibling's story

This is a short story written by an adult sibling about the emotional bind siblings feel when they're burdened by excessive caregiving of a brother or sister with disability. We will follow the story this weekend with a note from the author about her personal experience and research. I hope this will spark a lively discussion.

Pillow: A sibling's story

Every time Sister packs for a trip, she takes along Pillow, a battered cushion in a rectangular cotton cover. Mysteriously stained, once-white, with a print pattern in faded primary colours, Pillow looks suspiciously childish for a trilingual woman in her 20s fearlessly travelling the world.

Sister recalls the day she got Pillow. It was a spring afternoon, and her parents wanted to visit the new IKEA store. They usually went everywhere as a family, but Brother was so slow and clumsy. He touched everything, spoke loudly and often made everyone stare in public places.

Sister felt embarrassed just imagining what could happen if they all went together. She knew they couldn’t afford a babysitter. Her parents were eager to go out for a change of pace, so she said she’d rather stay home alone with Brother. Easier for everyone that way.

Mom and Dad are back, their arms full of new things. After describing the taste of the Swedish meatballs, Mom holds out a small white pillow. “We got something for you, Sister. This is your reward for being such a good sister while we were out shopping.”

Surprised, Sister wonders: What about Brother? He’s been home alone as well.

Looking closely, she notices bright red teddy bears, pink-faced dolls and yellow trucks all over the pillow. Do her parents think she’s still a baby?

Just this morning they said, “You’re very mature for your age. We know you’ll be fine looking after your brother until we get back. Thanks for offering to do this.” Sister panics. Wait. Have I missed something?

She runs through her checklist: I made sandwiches for lunch, cleaned up the kitchen, told friends I can’t play today, helped him in the bathroom, played in the yard, then sang softly to calm him down after he got scared by a neighbour’s dog. She inspects his face and hands. They look clean enough.

Holding her breath, Sister wonders if they will detect that Brother tripped and scraped his knee while running in the yard. Parents and teachers seem to have a way of knowing when something bad has happened, even when kids don’t tell them right away. What if they notice the scrape later? They’ll be so angry at me for letting him hurt himself. Selfish me, I was the one who wanted to play outside since it’s so nice out. I knew I should have kept him inside all day. I’ll never forgive myself if his leg gets infected now.

Sister decides to volunteer to help with bath time. That way nobody else will see the scrape. I guess it’s okay I didn’t call the doctor. It wasn’t an emergency. She puts on three drops of iodine to disinfect the scrape before sticking on the band-aid, just as she’s seen her parents do a million times.

As she takes the pillow, Brother hugs her. “Thanks for taking care of me. I’m so happy you’re my sister.” What a relief. Brother’s already forgotten about his scrape.

Sister isn’t sure whether she deserves this unexpected gift. She’s anxious to get to the math homework she hasn’t even started. She presses the pillow to her chest and says the magic words that make them smile. “Thanks, Mom and Dad. You can go to IKEA anytime you want.”



Please ask Professor Sophia Wong, "What does she hope to gain by writing this piece?"

Afterwards, we can begin the debate.

Matt Kamaratakis

Hi Matt -- I will post her follow-up piece tomorrow!

Thanks for your interest! Louise

Hmmmm. I have found that older siblings of the disabled -- those who grew up before the last twenty or so years -- have had very different experiences than those who are growing up in the present. I am certain that this is because the field has been "opened," and more families are educated in what to do and what not to do. I know that there's a lot of work left to do and much to learn, but most of what I've read on the subject, written by older adults seems irrelevant. I struggled in the early years with how to help my sons cope with their sister's disability, and I felt very conflicted about what was "too much" and what was "reality," and I've found that it's an ongoing process. I look forward to the rest of this.

Hmmm, Elizabeth, I think you may be a little wrong here. I know a number of families who have young disabled sibs and typically developing sibs. Let me tell you, not every family is "educated," not every family can afford babysitters or respite care even if they could find soeone qualified, and yes, sibs still do help take of disabled sibs, and trust me, they won't always tell you that they are not happy and thrilled to do so.
And yes, not all parents, even in this enlightened age, make plans for the future, when they may become ill or pass away, but the typically developing sibs will be there . . .

I am a typically developing sib in my late 20s, with a sister in her early 30s who has mild cognitive disabilities and maybe some form of autism. Her disabilities are much less than many of the disabled people (children and adults) in the world I read about, such that she never needed "babysitting" or any sort of formal caregiving. My parents never asked me to take on additional responsibilities, I was always very involved in school activities, and a very good student. I went away to college and then graduate school. I do not live in the same part of the country as my parents, or my sister (who still lives with them). Which is to say that to all appearances, my upbringing was in no way hindered by my sister.

And I don't really identify with the Pillow/Sister story, but I DO identify an incredible amount with what Professor Wong wrote in her author's note about keeping my feelings to myself, not burdening the family, and taking on (in my case emotional) responsibilities that were beyond my age or ability. This is an important topic and one that (even now/recently) is not talked about enough. Thank you.

Dear Elizabeth, please review the recent research I have posted on my website. It is true that some parents, like yourself, are better educated about the need to support typical siblings. However, research on young caregivers published in 2005 indicates that many young children are still being asked to pitch in as surrogate parents at home.