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Small group talks

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stacia
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Small group talks

Each night the cabins have an hour long chats. the mentors lead these chats and we Beth, Tara, Elaine and I will help. The topics for now are:

Initiating friendship/reading social cues

Empathy

Bullying/conflict negotiation

Challenge (this is ropes course day and Jack and Morgan have a great speech regarding challenge)

we will do some role play. without giving away something your children would not others to know, can you think of examples which would be good role plays.

Thanks

Wynnie
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I am very excited for my 16 year old son, Collin, to travel to MT.  I believe he will enjoy the talks and will love the activity. 

I like that cell phones are not allowed!

thanks

ckvoyce
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I think friendships -- or the lack of them -- has been the hardest thing for Emma. The first issue is the loss of friends: it has been very hard for her to see her former friends move on. Most of them, including our next door neighbor who used to spend hours with her, don't even acknowledge her. Emma is shy and hesitant to speak up (even pre-BT), but this situation is different -- it's almost as if she is invisible. I think many of these girls don't have a clue about how to react to Emma. Sometimes I think the only two options they can think of is a) to ignore her existence, or b) treat her like a cute class pet -- very sweet nice voices and smiles, but no expectation that she has the capacity to interact beyond that (not true!!!).

Another issue that has come up is the lack of time Emma spends with "typical peers." I recently talked to her about how, if she wants to make friends she can't sit on the bus with her headphones on. Her response to me was, "but I can't talk to them!" I thought she was referring to being shy, or that it might be a difficulty following the social thread and understanding subtle cues. When I followed up with more questions, however, she told me that she can't talk to them because she doesn't have any classes with them and so doesn't know who they are talking about or what events (mini events like someone tripping in the lunch room, etc.) they are discussing. This makes sense since she is fully capable of having conversation and picking up on subtleties in family interactions. So anyway, I guess the point is that I was assuming that the issue was the one I have repeatedly read about -- inability to follow conversations at the speed of teens and misunderstanding or lack of awareness about social cues.

And finally -- and this is as much a challenge for me as for her -- are all of the issues related to rites of passage that most teens go through -- drivers licences, parties, college planning. It's not that we don't talk about these tings, it's that her same-age peers -- and even her younger brother -- are will be able to move forward with their plans much more quickly than she can. And at this point, it's hard to know how to factor in likely limits. I don't want to limit her aspirations, but there are limits to what she can do: Is she ever going to be able to drive? Will she be able to work at a job that has the potential to support her or are we looking at something part-time to supplement SS disability? I know she wants to move on to college already -- yesterday, actually! It's hard for her to accept the realities of having to go through high school at a slower pace.

I didn't mean to write a book. I hope you can pull a strand or two out of there!

Charlene

PS: one more! Taking risks is a huge issue for Emma. It's not that she is afraid to climb a tower or anything like that, but she is terrified (or so it seems) of not being perfect. She is reluctant to do things that she might not be good at, at least in places other than home. I think she fears that, if she does something poorly, it will confirm people's perceptions of her as being different/disabled.

OK, one more one more: Emma often doesn't want to be seen with people with intellectual disabilities because she is afraid that people will think she is "like them." This is hard for me from the standpoint of wanting her to be accepting of others and to see past others' differences. But for her, it's about distancing herself from assumptions people make about her. I'm not quite sure how to address this.

 

 

lisakrat
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Hi everyone,

This is Lisa and my son Kyle (age 14) will be attending camp for the 2nd summer this year.  Happy to report that although I will still worry, it wont be ANYTHING like last summer when I was a complete looney bin!!  He has already informed me that I better not call the camp to speak to him (yes.....I did that last year.........I just had to!!). 

Thanks for asking, Stacia, about the topics we may want discussed at these nightly cabin chats.  My son still struggles with normal-everyday conversation - - asking about others and truly being interested in their answers - - knowing what questions to ask others - - not always having the conversation be about him (this one makes me crazy the most).  Eye contact and staying on topic......all those things that we take for granted that seem SO TOUGH for our kids.  It sounds like your "initiating friendships and social cues" will target all this. 

I LOVE your role play idea.  Nothing better than actually acting it out.  This is right up Kyle's alley and he will love it.  I also love the idea of discussing their IEPs with them....teaching them about their strengths and weaknesses and how to advocate for themselves. 

Two days to go.......I cant believe its actually here!!

Regards,

Lisa

 

stacia
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Just a quick note because I am running like crazy as I am sure all of you are today.

Peer relationships-the changes, the rejection, the lack of understanding and the occasional I would rather just hang out with my parents are almost a universal "problem" in this community. We will definitely talk about it and role play. I will give you specifics on different days.

We are going to do a discussion on challenges and risks the day we have the high ropes course. There is a staff member who was diagnosed with Lou Gehrig’s disease after his first summer working at camp. He leads the discussion and can really relate to change. It is a very, very sad story and he is very dear to all of us. I think he could inspire anyone to take risks. These risks translate to risks in friendship as well.

Not wanting to be seen with people with “intellectual disabilities” is very interesting. At Teen HUC, people are very accepting of each other. However, this is an overall brilliant group and I think frequently many brain tumor survivors have been put in situations with people (mostly not brain tumor survivors) with much greater challenges. During the relationship talk, we will talk about how the world sees you vs. reality.

Thank you for the reminder about discussing transition and not being able to keep up with peers. This is such an important topic and one without answers, but at least here we can work on self-esteem and focus on strengths.

Thanks for the beginning of wonderful discussions.

best

ckvoyce
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I want to clarify my comments because I am afraid I have painted a picture of Emma that isn't accurate (she is incredibly kind and patient). The issue is that, at school, she distances herself from kids in "Room 8" (yes, they still call it that!) because of the stereotypes and stigma associated with the program. Emma was assigned to  "Room 8" when she arrived at her school for her freshman year and it was not at all a good fit as it is primarlily a life skills class and Emma is independent with all of the skills they addressed. She is now taking college prep classes, but other students, and even teachers, underestimate her abilities. In her mind, she believes, and might be right, that having been in Room 8 contributes to the problem.

She just returned today from a week-long Youth Leaadership Forum designed to help high schoolers with all sorts of disabilities advocate for themselves and for others with disabilities. It was an incredible experience for her and she made friends with other young adults who she might otherwise not have had an opportunity to meet anywhere else. She came away with more confidence than I have seen in years!

And now she gets to do it with cbtf! I am so excited for her!

Charlene

BTY, some people still call it "Room 8" but it will NEVER again be labeled that way in the year book!

lisakrat
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Charlene,

 

This Youth Forum sounds wonderful.  How did you find out about it?  Where are you guys located?  I would love for my son to get involved with something like that. 

 

Thanks,

Lisa

ckvoyce
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We are in Connecticut. Does Kyle like to swim? :)

The website for the program is: http://www.ctylp.org/

The people who hold this conference are amazing (I went to the closing luncheon and was able to hear them speak). I'm sure they would be happy to share any information about similar programs in NY.

One of the great things they do is have kids meet up a few times over the course of the school year to work on a community service project. It was amazing to hear them talk about the ways THEY were going to help others. Such a nice turn on things!

 

Charlene

stacia
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Charlene, thanks for clarifying, but I imagined Emma to be kind. I think this is the kindest, most empathetic group of teenagers ever. I knew what you were saying, I just worded it poorly. See everyone soon and thank you for the Youth Forum information.

ccoutts
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Hi Everyone.

Im cheryl, Morgan's mom. Morgan is heading (actually I believe she is there by now) to montana for her third year and is as excited as ever. she has met and kept many amazing friends from her time there each year. It has been nice to scroll through the posts and see some familiar names (HI LISA!!...glad kyle is back) and some new ones. Eachyear I feel blessed that this group is available to Morgan and our family we have both found some amazing connections through it.

One comment I did want to make to start was when I was reading through the posts it seemed thatthere is generally a similar feeling our "kids" often get over looked by others who are not brain tumor survivors. Or should Isay thatmany times other people make assumptions that brain tumor survivors can't do things, when in fact they certainly are most capeable of doing most things if not everything anyone else is able to do. While Morgan is surrounded by great friends in her community who often support her and her efforts, the real world recenty has been more of a challenge. She has a new job and proudly told the manager ofthe restaurantthat she works at thatshe is a brain tumor survivor. She sees it as a thing to be proud of...the manager saw it as a disability and immediately took her offthe floor serving people and put her behind the line just handing out food. She has had an up hill battle since proving herself over and over again to this manager that she can do what her peers are doing. It is a shame that the world makes these judgments on all kinds of people not just our kids. and its a shame that I had to tell morgan thAT  from now on she may want to keep it quiet she is a survivor until she is estabished and others realize she isn't any different than anyone else. The world is rough...and unfair. I am happy that Morgan is surrounded by compasionate, kind, loving people that she will find in Montana to help guide her though some ofthe unfairness life can dish out.

anyway, I'm thrilled aboutthe topics choosen and will happily try to weigh in on anything thatmay possibly help others.

Thank you again Stacia and CBTF staff...you are amazing

Cheryl

stacia
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Morgan actually used that story to help that group build their public service announcement. You would have been so proud of her. 

Each of them has started to open up and they understand each other on levels that only they can. I can't wait to see the public service announcments. Camp will mail a copy home to you as well.

Have to run, but I will be back on later.

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