Monday, September 22, 2008

I wonder what it would be like if...?

Joy's older sister Rose, age 6, had a lot going on this past weekend. First we had the camping trip, and then after we got back on Sunday and had lunch, she had a playdate with a classmate from school. When she got to her friend's house, another classmate was there too, and then her friend's little sister (about Joy's age) woke up from nap and the four of them ran around like crazy.

Later in the evening, Rose talked me into watching a bit of football on TV with her instead of our usual bedtime reading. (Is she her daddy's daughter, or what?) As we watched, out of the blue, she suddenly said, "I wonder what it would be like if Joy didn't have autism and epilepsy, and she could play with me more."

I figured out right away that this was coming from the playdate experience with her friend's little sister, and Rose confirmed that this was what she'd been thinking. I was happy that my voice stayed steady as I agreed, yes, that things would be different.

And then I mused that it would probably be different too to be like her best friend who doesn't have a sister or brother at all. Or to be like one family we know where there are something like 6 or 7 years between the older brother and the Joy-aged brother. Yes, Rose agreed, that would be different too.

Then she came back to Joy, and she reminded herself (I didn't even have to say it!) that she does play peek-a-boo and chase with Joy, and that they do have fun.

And then Rose said that even if things were different, "I would still love her anyway."

And then the ref threw a flag and the conversation turned back to the football game, and she hoped the flag was against the Packers.

5 comments:

AuntieS said...

Such wisdom from such a young child! We are very fortunate that Rose is so able to express her thoughts. It seems that it would be hard to know what siblings think or feel, how they are experiencing life with a sibling with autism. And it might be easy for many people to forget to even be aware of the way the siblings might view their family life with a sibling with autism. I would think that, when the siblings are still very young, they don't know any different way of life so they think life is just this way and it is normal and all families have a child who has these issues. I remember when Joy was having such a tough time when you were visiting here for the holidays. JoyMama was trying to read a story to Rose and Joy was having such a meltdown without being able to express what was bothering her. I took over the reading with Rose so JoyMama could take care of Joy. Joy continued to cry and be very upset, and Rose just seemed to take it all in stride, and didn't seem to be bothered by Joy's tantrums, as if this was perfectly normal and usual. I wondered at the time if Rose thought about or was aware that things might be different in other families. I guessed that as the siblings grow older and have more experiences outside of their own family, they begin to see that other families are different than their own, and there are many different "normal" families and sibling relationships. That seems to be what is happening with Rose, and it is very helpful for the rest of us that she is able to give you (and therefore, us) a window into the world of the sibling. And, of course, since I am an aunt, I think that Rose is amazingly brilliant and insightful anyway!!
I know that Rose likes to read, so I'm wondering if you have found many books that tell the story from the viewpoint of the sibling of a child with autism? Have you shared these books with Rose?
Thanks for sharing this story with us.
-AuntieS

datri said...

OMG, Laurie said nearly the exact same thing a few months ago. I looked it up on my blog: And then last night while giving Laurie a bath, she says "If I had one wish (I'm thinking she's going to say something like "get an iPod"), I'd wish that Kayla was smarter so I could play with her like a regular little sister. Because every time I try to play with her she pushes me away." Broke my heart, I just wanted to cry. Of course, I had to be all upbeat and give some examples of how they "play" together. But I knew exactly how Laurie felt.

JoyMama said...

AuntieS - Rose is somethin' else, isn't she? That's a very good point about books. JoyDad already did some searching and sent me a list!

Datri - aww, big hugs to you & Laurie! What a tough conversation. I probably had it easier because Rose stated things in terms of just pondering, and then reassured herself on her own. But the heart of the matter is the same -- their little sisters are different to play with than other people's little sisters. And that's not easy.

JoyDad said...

Rose is a pretty perceptive kid, isn't she?

I like the idea of getting a book or books (thanks AuntieS!), it might help her to understand she's not the only one with a sib with autism. I'm remembering how we got Rose a book about losing a loved one after her grandmother passed away, it seemed to help...

AuntieS said...

One other thought I'm having is that Rose will probably revisit this topic many times as she grows up, with perhaps a different view or reaction each time. In general, I have found in my own experience that kids do need to come back again and again to issues that concern them in order to truly process, accept, and live with whatever it is. So, Rose may come up with more questions and thoughts and insights as she continues to widen her own life experiences to more and more families, including other families with a child with autism. You will both need to use your instincts to know if she just needs to voice her thoughts as she did this time or if she needs to get some answers or responses or feedback from you (and I know you will do that).
As for the book idea, I'm glad you found it helpful. I know that Rose likes to read, so I thought she might be one who could use books to help her process the important things in her life. So, maybe I could suggest another blog topic for you (as if you don't have enough already!!)? After you have perused a few of these books for and with Rose, could you share some thoughts on the quantity and quality of these books. I imagine there are some that are more helpful or better written than others. I am also curious if there are many such books or a small selection. Okay, so that's your homework assignment from AuntieS!!
-AuntieS