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Need a Reference- LexiRae and DangerDash, anyone?

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Chronic Pain
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Posted 2/15/2013 10:50 PM (GMT 0)
I am looking for some resources to send to a student of mine. He has pretty severe spastic CP, along with some other possible very rare movement disorder dxs.

He has had DBS surgery twice and is now looking at a third time. The first surgery the unit and leads malfunctioned and just today he found that the leads migrated from the second surgery. This has been a very stressfull process for him and his family.

He is very depressed, his goal was to walk after the first surgery, which at this point in time is just not realistic. I spend most of my time with him as a counseling session verses an OT session, of course I dont mind. I will be there for him with whatever he needs. Anyway, maybe some good uplifting books or movies that he could specifically relate to. I appreciated the movie Rory OShea Was Here , but I think this would be to emotional for him right now. I was thinking about some of the Mattie Stepanik books, but havent looked for them locally yet. Any suggestions would be appreciated.
Posted 2/15/2013 11:10 PM (GMT 0)
It's so hard to say what to do here.

Uplifting movies/books could either help, or get his hopes up, and then he crashes twice as hard if the DBS continues to be unsuccessful.

I would focus instead on steering him towards the positives in his own life/the things he can do.

You know him better than we do, but when I was a kid, the hardest part was trying to come to terms with the fact that there's no cure for CP, like there is for other things. And unfortunately the treatments are soooo frustrating...either radical with a bunch of unknowns, or pallative...aka just trying to get by.

I had a physical therapist who was absolutely wonderful and helped me see around my limitations. She wouldnt let me feel sorry for myself...because to her, I wasn't "sorry" if that makes sense.

I know that wasnt what you wanted really but, I think you're doing more good by yourself, than you realize.
Posted 2/16/2013 2:39 AM (GMT 0)
It is hard to know what to do or say. I spent quite a bit of time in and out of hospitals growing up. When not inpatient, I wanted to have as little said about my illnesses as possible. My friends and family knew I was sick so I didn't feel the need to explain my self very often and I didn't want to. I'm sure I frustrated people, but that was how I handled it.

How old is this child? When teaching I had a pretty wide variety of books. Some of the kids loved the Chicken Soup for the Soul books. Lurlene McDaniel also writes books about kids facing life-threatening situations and illnesses. They can be pretty heavy. I found that my "healthy" kids would read them to try and understand what classmates were facing.

Regardless of what you decide to do, I think it's great that you care so much about this student.
Posted 2/16/2013 2:46 PM (GMT 0)
Thank you both for your responses.

This little guy is 16, so its really a tough age to begin with, lol. At this point in time, although his CP issues are bad and the new surgery is another big setback, his mental health status trumphs everyones worries. He says he feels invisible in the hallways and ignored, which I know for a fact is just his perception, kids are always talking to him socialy. He doesnt have the outside of school social life though between therapys, limitations and pain. I would love if he could find some sort of teen support group, we just dont have anything locally. There are groups that offer sports and dances, but they dont have good old support groups to talk about issues.

I am hoping that he returns to school next week for a bit before they do the next surgery. Thank you again for the input!
Posted 2/17/2013 4:40 AM (GMT 0)
He's not a "little guy" if he's sixteen.

He probably feels invisible because noone treats him like a teenager. People talk to me all the time like I'm mentally challeged/and or 5 years old. And I'm 25 years old.

Unless you can find a "teen support group" full of other teens with CP...I dont know if its gonna help much. It's easy to feel invisible when you're the only one in your particular situation.

A lot of times when people are overly nice, overly friendly, and go out of their way just to talk to you...it makes you feel like they're doing it BECAUSE of the CP...

Make sense?
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