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Initiating and maintaining friends

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stacia
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Initiating and maintaining friends

Hi everyone,

One of the cabin chat and fireside chats will be on starting conversations, ending conversations and just maintaining friendships. We like to make the discussions very interactive and usually ask the survivors to give examples. Some people have no difficulty with friendship, but the majority spend many Friday nights at home.

While we ask for examples, can you all start sharing some examples of friendship or conversation challenges you have witnessed? In the past, parents have talked about the lack of empathy survivors have for people who did not have a brain tumor. They have trouble with the "trivial" problems faced by their peers. They also seem to have trouble talking about current television, music or teen type things. Mostly because they have more interaction with their parents. As a result they tend to talk about older tv shows or music which further seperates them from their peers. These are old souls in so many ways.

Does anyone want to comment?

Stacia

kellyb
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Hi- My son Alex is 13 and he has no problem intiating a conversation, however he can go on and on, not knowing

to stop. He also asks a lot of questions. He's socially awkward at times so I think he tries to hard. He has so

many great qualities, but there's a lot of work still to be done.

 

Johnston
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While our son was never one to initiate friendships, it has been much harder for him since he was sick. He doesn't feel like he has anything in common with his peers anymore. He doesn't like the HS dances because of the music. He talks about other kids and refers to them as friends from school, but Friday nights he is at home with us. Sure we love having him around, but I feel like he is missing out on a big part of high school in the social department. It is hard for him to see humor in some of the prankster things High school kids pull on one another. He takes things very seriously, probably because he is so mature for his age. I would love to see him let loose a little bit and have more friendships.
stacia
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Thank you for the great points. I have noticed many survivors (and just teens in general) not picking up on social cues to end a conversation, so that is a great role play and dicsussion. 

It is funny you brought up dances. So many of the teens hate dances because of the over stimulation and loud noise, but at the Teen HUC dance party so many of them dance for the first time. We do talk about literal interpretation and how to accept others humor when it is not funny. Thank you so much and I will keep you posted on these topics.

Best

Boyzndogz
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Luke, 14 almost 15, can initiate a conversation with anyone. With his peers though it stops there. He has a hard time with the back and forth. With adults he does much better for some reason. We let him get a Facebook acount six months ago and he has much more social "interaction" there. Although it seems like he is still the one initiating the contact then it fizzles. 

Most of who he considers friends are girls. I wish he had a buddy. He has some physical limitations which make it hard for him to keep up with boys his age. 

Thank you for this group and camp. 

Janet, mom to Luke (brainstem JPA dx at 9yo)

stacia
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Hi Janet,

We have several excercises to assist with the back and forth inlcuding drawing topics out of a hat. I will put all the excercise we do and the results in the group, so maybe some things can be implemented at home or it may trigger other ideas.

I am going to post another topic tomorrow. Thank you for the feedback.

Stacia and Wade

cjfountain
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I agree with the other parent's comments.  Les's speech therapist actually worked social skills into his IEP goals for next year, so I'm hoping for improvement over time.

cmgriff
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Our son Peter (13 and entering 8th grade) is just starting to notice the lack of response from his friends at school.  He has always been well liked and supported at school, and never bullied. His friends have slowly moved on, and he doesn't get invited out very often.  

Pete does try to initiate, but his attempts at getting a group of kids together to do something usually isn't well received.  The texts I have witnessed show people being polite at first but he comes across as too eager.  Their "we should see this movie sometime," is met with "OK great, When? Where? What time?"  The friend usually backs off.  

He is just now starting to notice this.  He said one time that he noticed everytime he posted something when included in a group text, the response was "crickets"- and the whole conversation just stops. He has a good sense of humor and laughed about it when telling me, but I know he is hurt when they don't even bother to respond.  The girls are usually nicer than the boys.

Peter is really empathetic, so he has never had difficulty relating to others' problems, and is generally really interested in his peers.  Wish he could find a friend that needs him, as much as he needs them!

 

Catherine Griffith mom to Peter (medulloblastoma dx at age 8)

 

 

stacia
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Catherine, this is so common and thank you for another great "role play". It is hard not to get excited, especially when you really want to do things with people, but we will work on finding a balance. Funny how young people start playing "games". If only people could just accept excitement as excitement.

And Cecillia it does take time, but I really think this is one of the biggest barriers for survivors and it certainly carries over to employment. I hope as a group we can keep making progress. That is great it is in his IEP.

Boyzndogz
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About our kids prattling on and on about some favorite subject. Luke (14 yo bt warrior) doesn't have this issue. However, our 12yo non-bt kid does. 
 
I find it very difficult as a parent to know what is typical teen stuff and what is bt related. Luke is our oldest so we don't have a benchmark. With Luke's quirks I'm always researching accommodations or adaptations. It is very consuming. It is a relief when our other son does something and I can say "Oh, thats normal teen behavior" and believe that they'll BOTH mature out of it. 
 
How do you decide what's normal or bt related? And, does it matter? 
 
With hope and peace, 
Janet, mom to 14yo Luke (brainstem JPA dx at 9yo) and the loquacious 12yo Collin
 
Deballen
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My Jacob who will be 15 in about a month was diagnosed with a Left thalamic/ hypothalamic astrocytoma on his 13 birthday. He has always been a very compassionate social child.

He was teased a lot when he was younger and instead of staying away from the boys, he tried his hardest to be their friends. He had fianally found 2 good friends not too long before he was diagnosised. After he started chemo, his friends stopped coming around. He didn't have the strength to go out with them. At school, he's had a hard time keeping up with the class and instead of letting his teachers know he became the class clown.

He started spending a lot of time online on the x box finding friends that didn't know he was any different. There's that saying "you can be anything you want to be online" that statement is very true for him. It's interesting because the kids will laugh at him and tease him at school but online the same ones are best friends with him. And at church they all seem to look up to him.

One day he doesn't want anyone to know he has a tumor so he is not treated any different. Then the next he will get frustrated that people don't understand he has issues due his tumor because they can't see it.

Like Janet, I find it hard to decifer if some of this is normal teenager behavior or if it's the tumor. He is my oldest also.

 

lisakrat
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WOW!  I am so happy that all our kids have these issues and it's not just my son.  It makes me feel a little less alone and reading everyone's comments is a comfort to me.  I think a lot of this is typical teenage behavior but with our kids, it tends to go a little further.  Our job as parents is to encourage and teach our kids about calling friends, making plans, etc.  It just might take a little more encouraging for our brain tumor kids.  I find that when Kyle hangs out with the kids who are in his classes at school (self contained special ed classes), he fits in better.  They get him and he gets them.  I LOVE your idea about acting out social situations Stacia.  That will surely be a help to all    Lisa (mom to Kyle, age 16)

nancylexie
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My Lexie is such a sweetie, yet rarely if ever gets a call to do something with friends from school. Granted her school is very small, but she is fully aware of the social goings on and that she is not oftern invited. Her best friend is another BT survivor, who lives three hours away. Her BT support group at Dana Farber is her greatest source of regular social networking. She is active on FB, but that is not the same for a 16 year old.

I would love her to have more people to go places with and have regular teen fun with. We do our best to keep her busy, so she is not sitting home, but it makes me sad to see her sister constantly out with friends and Lexie not.

I ma not even sure there is an answer to this dilemna.

Thanks for listening.

Alice

michelled
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 My daughter Kayla, 4 days shy of 15-years old, was diagnosed with a pilocytic astrocytoma about a year and a half ago.  She has never been the type of girl constantly on the phone or texting with friends but I've had to really nudge her to do things with other kids her age and just be a kid.  After her surgery, she was still tired alot and was on alot of meds for seizures. Her doctor made it a point to not limit her life just because she had the tumor and now has seizures so I try to suck it up and encourage her to do things without me even though I would love to put her in a plastic bubble 24-7.  She's not tired anymore like she used to be but she still would rather be at home or hanging out with me instead of with her friends. Before the summer she was spending all her time with school work and band practice and enjoying interacting a litlle bit  with other kids, but now she is content at home and the library. And I totally agree with the whole "old soul" thing. The times she does hang out with other kids, she's giving me logical responses to her friends teen issues, and I tell her "geesh you sound like an old lady!!!" In a way it's great because I know she doesn't have that whole care-free irresponsible teen mentality but I wish she could get out of her comfort zone and have more fun.   Not sure if its just her personality or from the tumor? Her relationships with her friends were affected by not only the surgery recovery but also changing to high school and not seeing her friends since she changed classes  So of course it takes effort to communicate with them to keep in touch which she hasn't really done alot.   And now, she is changing schools and having to make new friends but  she is making steps to get involved in different school clubs and activities so it's a working progress.  I'm not as concerned as I was right after surgery, she seems to be staying positive and after talking with her friend's parents most of the other kids are just having lazy summers too.  I'm hoping that this camp experience will help build new relationships with kids that have gone through similar expreiences because sometimes I feel like her friends can't even relate to some of the things she's been through.  I don't think she expects them to, and I've told her not to label herself by her brain tumor and "keep it moving" even though it is a part of her life.  Talking with others I think is a part of healing, a part of coping and moving forward,  a part of comfort,  a part of feeling a sense of belonging, that I think all these kids need. Looking forward to hearing her stories about her trip when she comes back!! (not looking forward to saying good-bye though)

 

 

Michelle 

alligood2000
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One day after school, a neighbor boy had missed the bus and I offered to give him a ride home. In the car, it was very insightful. Matt was trying to be friendly and initiate conversation and I remember him saying, "So, Landon, what's your learning style?' It was such a strange conversation opening and it was clear the boy had NO idea what to say. :) I thought it was insightful into the way Matt might be attempting to interact with his peers and why they don't quite know what to say back. Matt will also do strange things like end conversations or activities very abruptly. We can have company, Matt seems to be enjoying himself and he'll just suddenly say, 'I'm tired. Good night.' And leave. I know he doesn't realize he leaves people hanging, and as his family, we are used to his abruptness, but others aren't.

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