United Brachial Plexus Network, Inc.

Ashley, 6, is very vain, she worries what other kids think already! Anyway she is going to have a lat transfer in March and will be wearing a cast/splint full time until June! At this point when I ask her, "Ashley, are you going to go to school?" She says nope! So what I am looking for are any suggestions that might help? I am wondering if I should print some pictures off Francine's website and make a little story? Only thing is Ashley may not ever forgiving me for making her the center of attention! Maybe I could do it after her surgery when she is still at home and not at school?

YIKES lenni!

you know what really worked for us better than anything else? I wrote a letter to each parent in Maia's class and explained the situation and gave them a couple of pictures so that they could talk to their own children about it. I also gave them a task - I asked if they could pray for Maia for her surgery and asked them to light a candle - giving them some tangible way they could get involved.

This kind of communication was more private - didn't involve Maia but really worked...MUCH better then me doing the story and writing the book (although it was helpful, but then again they are 3-4 year olds)

some more ideas....

Maybe all her friends can autograph a pillowcase her so Ashley can bring it with her to the hospital?

Also, maybe you can have a welcome home from hospital party and have all kinds of glitter and goop and iron ons and stuff that she and her friends can decorate her splint with?

I think the more ways you can involve her friends, the more comfortable Ashley will be.... she has to learn that her friends will like her splint or no splint.

anyway...ramblings...
-francine

Where is she having this done and what does the casting look like?

This might sound kind of wierd but the one thing I would try not to do is actually ask her if she is going to go to school... unless you think you would be willing to let her stay home the whole time. If she thinks this is even an option she will go for it... my four year old is much the same way.

If you are really concerned about how she will deal with the splinting while going to school if you are willing to let her chose to postpone the surgery until school is over that might help her feel better. Of, course I would go into a lot of detail of what being splinted during the summer would be like... hot and having to miss out on stuff like swimming...

But with Ashley being six it might mean lot to her that she gets to have say as to when she will be splinted?

And out of my own curosity... what does she think of having the surgery? My son is only one and I am hope to hold of on muscle and tendon transferes until he can have a voice in the decision. But that might not be an option so I was wondering what a six year old thinks of this?

Thanks,
Kristie

Do you "need help changing Ashley's mind" as your subject line indicates or are you just looking for thoughts in general? The reason I ask is b/c I wonder if changing her mind is actually the best thing to do. First let me tell you that I have no idea what the right thing to do is and esp. b/c I don't even know Ashley and I know there isn't "one" set answer. I guess what I was wondering is since you asked her if she's going to go to school, are you willing to offer her an alternative, such as homeschooling for a brief period? I imagine that some of our children will go through life not worrying too much if they look different or if others know about their arm, but there might be a lot of children with BPIs who grow up wanting to "hide" their injury as much as possible. As a child, it is sooo hard to be different than other people. I guess I would just be concerned about the psychological effects of making a child go to school wearing something that draws so much attention to him/herself. I know that I might have to face these issues myself someday and don't look forward to it. Actually, my goal is to get any surgery stuff behind us before school starts so that I can avoid these heart-breaking decisions. (it's nice to have goals anyway) How does Ashley feel about having the surgery in general? What is her ideal plan? Would she like to do her schooling at home or would she prefer to wear the splint over the summer? When you mention printing pics off the website and making a story, would you do that to share the story with her class? If that's the case, it doesn't sound like she would be comfortable with that from what you said. Does she have a couple of close friends (don't remember when they start getting "best friends" as children)? Perhaps if she does have a couple of close friends, then maybe she'd be comfortable with sharing the story with them at a sleep over or something. Then, maybe her friends would be willing to have certain tasks that they'd like to volunteer to help Ashley with if she wears the splint to school. I don't think I'd share a story with her class before the surgery though if she's that worried about what others will think, but then again, as I said, I don't know Ashley and haven't been through this. Just giving you some rambling thoughts here. The best advice I could give, and I'm sure you're already doing this, is to pray pray pray for wisdom from God. Hope this helps. -Tina

Hello, thanks for the ideas and thoughts. Ashley is looking forward to her arm having more lift, however, I do not think she is aware of the therapy and length of time the splinting is involved. She has been asking very good questions and she has seen Maia's and Sarah's stories of surgery on Francine's website. I am prepared to home school her if necessary but I worry about her missing out on friendships and ect...because she is so shy. Also, she does not want to have her father or myself teach her things. I don't know why this is, we have spent allot of time trying but she would rather learn from her teacher and friends.

She does not mind people, friends ect...knowing about her injury, but she does not want any help with it! Always she has been determined to overcome it on her own! I recall trying to teach her to use scissors one day and she would not even watch me, so after afew minutes I gave up. Ashley dissapeard to her room and came out about ten minutes later using the scissors properly! So she is determined to learn things on her own.

We would have loved for Ashley to have surgery before she entered school, we visited BCCH regularly. They have just started doing this surgery in BC and she will be the fourth child to receive it. So, I hope this helps with giving you an idea of what it is like to be Ashley!

Lenni