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Good morning. 

Despite the long day, the accomplishment fireside went well and many people contributed there own accomplishments including Luke who said his accomplishment was "being awesome" to which everyone agreed that they had accomplished that as well. 

Today in cabin chat and fireside we are going to discuss barriers. This means barriers to reaching goals at school, medical barriers, independence barriers and relationship barriers. We know they will be great about sharing their barriers, but it would be helpful if some of you shareed barriers they may not think of.

Hope to hear from all of you.

Stacia and Wade and Beth


I don't know if there are other Luke's there this week, but that sounds like my boy :) 

One of the barriers we hit regularly is people being too nice. They do stuff for Luke that he can and wants to do himself. (It is apparent he has a disability, he has little use of his left hand and arm.) As a parent I know I'm guilty of that, I either hate to see him struggle or am not patient enough to let him figure it out and do it on his own. We have to work really really hard to step back let him struggle, figure it out and then have the sense of accomplishment and new skills. 
He quit the scouting program, which he loved, because the other boys and leaders would NOT let him do stuff. They'd do his dishes, put up his tent, etc. etc. He'd come home totally frustrated and demoralized. No amount of talking to the leaders helped. 


Most of Jacob's deficits are neurological rather than physical. He struggles with not wanting to be different so he tries to hide his deficits from friends and most importantly his teachers! He will not admit when he is unable to complete assignments or test due to his inability to recall things. His processing speed is very slow. He tries to laugh it off as if he just doesn't care. If given the proper time he's a very bright boy! Physically he gets tired easily and has frequent headaches but because he wants to be "normal" he will suffer through until he is at home where he can be himself. By that time he is exhausted and can barely function. He doesn't have the energy or patients to interact with his brothers basically secluding himself at home! He use to be such a happy kid. Now it seems there's not much that makes him happy! I am so thankful he's attending camp to meet others with some of the same issues!
I think maybe one obstacle to success is maybe not being realistic. I'm sure this is a problem of most teenagers (um, you probably won't actually be President of the United States even if you set it as a goal and work really hard!). :) I think teen brain tumor survivors have a particularly difficult time because what they USED to be able to do, may not be possible. Finding new strengths is paramount to being successful. Matt has a lot of significant memory issues. Before diagnoses he had an extremely strong memory. Sometimes he still feels like his 'old self' who could remember everything with ease. Writing things down is his new normal, but getting him to embrace who he IS, rather than who he WAS, is difficult, but can be extremely powerful in gaining independence and moving toward the future.
For my son Alex the barriers we've come up against Are the ignorance and unacceptance of people In different areas of his life. They don't see anything Wrong with him and when he acts impulsively or acts A certain way you try to explain and I've found most People don't get it and your left standing would Be nice to have more awareness. Alex just wants To be like everyone else.

Carolyn has a hard time being in large groups. I don't know if it is her hearing loss and the inability to hear distinct voices when there's a lot of background noise, or if it is her processing deficits that make it difficult to follow what's going on, but often in a large group situation she will tell me she is just confused. She prefers being with just a few people, rather than big noisy parties, which raises concerns among people who think she is either being anti-social or withdrawn. She sent me a text from Minneapolis yesterday saying she was worried because the group going to camp seemed much larger this year and very noisy, so I'll be interested to see how she does this week.


That is the same issue we have with Katie )arianna). People don't get it, we even had the issue at the brick and mortar school.
Lexie is not into large crowds either, it seems to make her uncomfortable. I think it would help if Caroline knew she was not the only one who felt that way. Hugs. Alice

Jacob sounds like my son Tommy.  He doesn't want to ever let on that he doesn't understand things which creates more problems for him because he ends up embarrassing himself from not understanding a conversation but pretending to.  He also has very slow processing speed.  He has no friends that he hangs out wiht.  The only friends he does have are his online friends that he plays with on Xbox live.  What does become an issue for Tommy is he will argue with everyone, including his teachers because he doesn't want to look stupid.  This gets him in trouble.  He also doesn't know how to socialize with his classmates.  A lot of this is due to his lack of comprehension sills.  I just wish that he could make one friend.  He suffers depression, has no filters, and acts impulsively. He will say things that come off very rude, and he doesn't realize this.  I am also glad that he is attending camp with kids that have been through the same thing.



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