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Day three

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stacia
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Day three

 

Today is a busy education day. This morning Tara talked about the effects brain tumors have on learning IEP's and your rights. The older group discussed college and options after high school. Tori gave an excellent speech about college interviews. We are going to type up some recommendations such as questions to ask your neuropsyhcologist and effects of a brain tumor and tips and dealing with them. It should go home with each participant as well as a scholarship list and a college interview prep sheet.

We are getting ready to start an art project on perception. Looking at how the world perceives you versus how you wish you were perceived.

Tonight’s topic is dating or at least initiating a relationship with someone you may be interested.

picardfour
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Hey stacia. Hope Kyle was able to listen in on the group about IEP stuff. I know he is under the weather but he really needed to hear what was discussed. Hopefully h was able to sit in.
ckvoyce
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Hi Stacia,

I don't know if any of the upcoming conversations will get back to IEPs, but if so, I know it would be helpful for her to hear about any others who have not been able to learn to read fluently. She told me a couple of weeks ago that 'it' -- by which I think she means 'life' -- would be a lot easier if she could read. She has found a few AT strategies that have been helpful, but so frequently finds herself in situations where she just wants to read a couple of sentences. Going through all of the AT steps is cumbersome and frustrating, and in addition often reinforces people's initial perceptions (how many times have our kids been told that reading is the most important thing they need to learn to be successful in the future?). Anyway, it might help her to talk with another young adult who struggles with the same problem. She may learn a couple of new strategies, but at least as important, she might reassess her own competence if she sees someone else who has found success while also not being able to read.

I am so grateful that you have all provided this opportunity. When I read the descriptions of what you are doing, I feel so relieved that someone is addressing these things. We have tried, but we "don't understand" -- truly! And Emma has been reluctant to talk about any of these topics with anyone here. In addition to the benefits of camp, I hope that she might be willing to talk with someone -- a social worker, a therapist, a ??? Perhaps that is something to add to the discussions (you probably already do): finding and using mental health services to help with every day stress and frustration. I suppose the other side of that is finding a therapist who understands the issues and doesn't make the same assumptions as the rest of the world.

Question: are there pictures posted anywhere?

Thanks again for all that you are doing. Looking forward to the next update.

Charlene

 

 

lisakrat
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Pam,

Oh No....what's wrong with Kyle??  Not feeling well.  What a trooper for going to camp anyway.  I am sure he is having a ball.  How's the week going for you?  I am VERY READY for Thurs to be here already!!

 

Lisa

stacia
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We are going to meet with the people whose IEP's we have individually the next two days. Yesterday both the younger and older children had tons of questions of what their neuropsych testing meant and many of them stated they had not sat down with the neuropsychologist to review what the test meant.While several of the mentors (as well as ourselves) recommened this to assist with gaining understanding of strengths and challenges. I know it is so hard to get this to happen, but I am going to try to get a couple of neuropsychologist to assist with these discussions. Tara Brinkman from St. Jude's is willing to do a one hour video chat for a future parent chat on the Friends Health Connection group if people are interested. She ahs a great way of explaining the test, their purpose and the accomodations that go with it. Maybe if we start with the parents and move to the teens, it will be helfpul.

the teens did discuss some of their peers and siblings not thinking their accomodations were fair as there was nothing that looked different about them.

All of the dating conversations were very interesting. I found it heart breaking that so many of the teens felt if they would just try harder, be more positive and understanding, people would like them. Many of them are still at a phase where they are creating a world where people are just understanding and feel strongly that as they get older it will be easier. While I wish I lived in that world as well, it made me realize how much support and programming we need.

nancylexie
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Stacia, thank you so much for your empathy about our kids and the ever present struggles they endure.....this is obviously a place where you have created a safety net so the kids can speak openly about their lives and their feelings. I hope we will each have an opportunity at some future moment to chat about any ongoing issues you feel could use some follow-up after they get home. Alice, Lexie's mom
JenC
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Stacia,

I just emailed Carolyn's IEP to you -- I completely forgot about sending it with her!

She did participate in this IEP meeting, so if you don't have time to get to her, she'll be okay.

Thanks,

Jennifer

ccoutts
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Wow, this is all such powerful stuff.

I was really moved stacia with your comments about the kids and their perception of dating and getting other people to like them. My heart breaks...they are such wonderful, smart, funny, amazing young people....sometimes it just takes someone else to take a moment to see what they are all about. I know Morgan would LOVE to have a boy friend. I know she isn't looking for a serious relationship, she is totally not ready, but the idea of someone liking her seems just so wonderful to her....and why not? That's what high schoolers do.. We've talked about it a little...she sees all her friends dating and i think would like to be a part of that expereince..even the drama that goes along with it. It is just a part of growing up that I think she feels like she is missing a bit. . I am sure she will one day date and have a loving relationship with someone, but that isn't exactly what I am talking about here. This is about being a part of the normal process of growing up. THe little steps, mistakes, mishaps, you make and take along the way to being a grown up.  Its' simply about doing the things that your friends are doing and being a part of the bigger unit...not always the outsider or loner. Thank you Stacia for all the insight you are providing, I know Morgan always comes home so much stronger emotionally from these trips.

As for the IEP...BRAVO for tackling this one. I do think it would be great to have some kind of parent meeting...meetings. I am equally confused half the time with the IEP and neuro psyche testing. As Morgan starts her junior year :"college serach year" ...I would like all the ammunition i can get my hands on to place her in the best possible institution for her.

Thank you again for everything..

Cheryl

apfisterbrown
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There is much to which I could respond. However, I want to bring up a potential topic since time is running out--substance use. I bring it up as I do not know the affects of it in relationship to all of the drugs our kids have already had. Additionally, based on some of the discussion, we certainly want our kids to continue to make smart decisions and not feel pressure to do what others may be doing or to feel part of the "in crowd." And, we don't want the kids to being using the substances to break down some of their inhibitions....especially in relationships with anyone.

As for the IEP's....the "powers that be" tend to want to shine in their discipline. Tori has been fortunate, or I have believed so, in our dealings with the testers. I have asked..."bottom line"....as the number jargon is only a number. Our kids are brighter than the scale. There is a desire to achieve. I always get frustrated with the kids who have the numbers and are performing way below their potential. Our kids are trying and doing their best.

As for the college deal....I am willing to assist if I can. When the dust has settled, feel free to contact me. In fact, I think I could invite a colleague to join me to help a group of parents/kids if you would like a meeting to go over the college process.

ckvoyce
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Stacia,

I don't know if there is room for another topic -- and maybe this one is already on the list -- but I think it might be helpful to have a discussion about parents. What we do too much of, what we do too little of, what they wish we would do differently. For all parents, the tension between protecting our kids and letting them go can be difficult to handle, but I think moreso with our kids. I can think of so many scenarios in which Emma would be exceedingly vulnerable (she is very small, can't run away, couldn't put up a fight if anyone were to try to harm her) and I can't stand to even think about those possibilities. We have talked about these issues and about ways to be safe, but I still don't encourage her to be independent in some situations (like going to the bathroom across an auditorium and down the hall at a crowded event). I worry about how much of this is about protecting her and how much of it is about managing my own worries and anxieties. I don't want to put her at risk, but I don't want to make her responsible for meeting my needs when she should be focused on her own.

Thanks for the updates!

Charlene

ckvoyce
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Sorry to keep adding things -- I think the conference needs to be a month long! OK, maybe not a month...

Before Emma left, she told me that whenever she is lying awak in her bed, she thinks about her next MRI. I aksed her if it was just because she has one coming up. She said no because she knows she'll have to have one every year for the rest of her life. Part of it is about feeling claustrophobic and some of it is about the general anxiety associated with them. Until recently, she thought the MRI was preventative but now understands that the purpose is to identify a recurrence early in its progression. I suggested that she talk with some of the other kids about how they cope -- either during MRIs or the time in between. So if there's time...

Thanks,

Charlene

lisakrat
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WOW!!! You guys are good.  So many wonderful topics have been brought up.  Charlene, I LOVE your idea about asking the teens about their parents - what do they love that we do?  What do they hate?  I hear you about letting them be independent (like going to the bathroom alone at a restaurant or event), but it is SO IMPORTANT that we let them do things like this.  It's the only way they will become successful adults.  This is our job as their parent.  Charlene, I dont know how old Emma is, but I remember some years ago when Kyle would need the bathroom during a school concert or play and my husband would say "let him go, he's fine" and I would FLIP OUT.  I found that the more we practiced discussing the "steps" to being safe, washing your hands, not taking to strangers, coming right back, etc etc etc, I felt better.  He's 14 now and I am completely confident that he can navitage things like this on his own.  Your statement about "our own anxities and worries" was perfect. 

Cheryl - my heart breaks for Morgan and just wanting to have a boyfriend like her friends.  Kyle is just 14 and already wants a girlfriend.  It will happen for our kids, eventually.  Possibly our biggest challenge is teaching our kids about patience.  And possibly the change of scene and friends at college will help with this dating thing (new people, new experiences). 

Stacia, I am happy to lend any help with understanding IEPs.  I am a Special Education teacher and would be happy to answer some questions.  As far as the neuropsych end of it - - that report is HUGE and hard to understand.  Any chance you can get a neuropsych to speak at the Campference and help us all to understand better? 

The topics this summer are amazing and our kids are so lucky.  But I still cant wait for Thursday to be here :)

~Lisa

 

 

picardfour
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He has been in the infirmary since Sunday night with a fever. Hopefully he will join the group tomorrow . Bummer ...he needs a redo for sure. Wanted him to bond with the kids and make friends which he needs in his life. Glad no one else got sick though. My week has been busy trying to get projects done in the house. I have been sending my thoughts to Kyle hoping he gets better soon. Enjoy your day tomorrow and see u at airport on Thursday. I should get there by 4 if u want to meet earlier. PAM PICARD
ween0503
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Hi All,

I hope everyone is having a great week.

About the dating issue.....my daughter was in a class in the high school for children who deal with school anxiety. It was a really great class where she got to meet other children just like her and learn tools to help. In this class there was a boy who wasnt able to attend school at all last year due to the anxiety issue. I found out that he liked my daughter (who more perfect than someone who deals with the same things?) He is very patient with her. He wanted to go to the movies, she was very afraid. So she brought my younger son with her! He was so fine with it. His mom and dad had a graduation party for him, she was very nervous about going. He came and got her 3 hours early so she'd have time to adjust to his grandparents and their house where the party was being held then she sent texts to me during the party when she got bored. She was nervous to go to his graduation ceremony so she brought one of the 13 year old neighbors with her! It's all working out. He is very nice, shy, quiet and quite the gentleman. He has even paid for my younger son to go to the zoo with them when he takes her!

They had a disagreement at one point, she was upset. I told her everyone has disagreements, look at parents and children.....now all is well. Letting her know it's okay to have a different opinion and still be together.

It gives me hope - he was placed in her life and she's now learning tools that she can use in the future. It's giving her self-esteem boosts with every step and we've had the talk about him being a gentleman. I have to say, she has a good head on her shoulders (when I was worried to death that she'd never have a boyfriend or, worse yet, be with someone who was a jerk) in fact, a much better head on her shoulders than I had at her age!

We have awesome kids. Thanks Stacia for all that you guys do to help them build up their self esteem. Love you guys.

Tina

lisakrat
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Pam,

I hope he's feeling better.  Poor Kyle!!  And yes, I'd love to catch up a bit at the airport before the kids get in.  Looking forward to seeing you then. 

Lisa

ckvoyce
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I'd like to join others in any pre-pick-up plans in Newark. I don't know the airport or the area, but if someone does, maybe we can meet for a late lunch or coffee. Anyone up for it? Know a place to meet?

Thanks,

Charlene

lisakrat
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Charlene and all,

You are more than welcome to meet up with us tomorrow at the airport.  I dont know the airport well either but last year we all just kinda found each other.  We sat at a table and talked until the plane landed and then all walked to the arrivals area together.  I am happy to give my cell # so that we can all find each other 631-662-6373. 

Looking forward to meeting and seeing everyone tomorrow. 

Lisa

 

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