Help me with your experience...

  1. In my spare time (what spare time?), I write. A little. 10 years ago, I wrote a book (took me more than a year) and got some very nice rejection slips, but never was published; the rework it needed (too many characters, plot a bit too complex for the romance market -- that's what the rejection slips agreed on) was just too much and then life got in the way. Anyway, a learning experience.

    Anyhow, now I am getting the urge to write ANOTHER book and will soon be doing an outline to work from (right now it is coalescing from the fog).

    My characters always come to me first. They seem more real to me every day at this point (plot is still a bit vague, but it's coming).

    The one I need help with is a wheelchair bound 9- to 10-year-old boy with an assistance dog.

    What I need is a diagnosis, then I can start reading up on it for the book. The little guy in my head doesn't have much voluntary facial expression, he's smaller than average for age, has a bit of arm muscle control, and he's able to manipulate an electric wheelchair. Uses a mouthstick and keyboard with electronic voice to communicate. He also has average to bright intelligence.

    If you've worked with a similar child, how do family and neighbors interact with each other and the child?

    If anyone's seen an assistance dog in action, I'd like to hear about your impressions of that. What was it like? How did the family integrate with the dog? How did the dog interact with the helpee as opposed to other family members? (I realize I can get this from the assistance dog sites, but I KNOW you all, and I don't know any of them yet ).

    So...if anyone has any ideas? (I suspect it'll be 5-6 years before I get this done, but you never know...and if I do get it done, you guys can read it first).
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  2. 18 Comments

  3. by   Rustyhammer
    How about spinal bifida for a dx?
  4. by   TX Guy
    Hi Researchrabbit

    Why not just make up a diagnosis?
    How many people would know enough to question it.
    Besides I like to just let it flow. I think thats when the best part of yourself gets to come out.

    Write what you love and let the chips fall where they may.
    You can always revise it later.
    Good Luck!

    Paul
  5. by   kittyw
    MD?
  6. by   sunnygirl272
    Originally posted by kittyw
    MD?
    that was my initial thought, too....
  7. by   researchrabbit
    Originally posted by sunnygirl272
    that was my initial thought, too....
    I was sort of leaning that direction -- muscular dystrophy -- I like the spina bifida idea, too (thanks Rusty, that wouldn't have occurred to me).

    TXguy, I always enjoy books where I learn something; I like to write that way for others (I'm a teacher at heart).

    It's going to be a thriller (with a possible science fiction bent, haven't quite decided that part yet) so I will be letting plenty of it flow.
  8. by   P_RN
    http://www.caninecompanions.org/our_services.html

    Here you go. Canine Companions for Independence. My friend (has post polio) got her first dog many years ago. That was my first experience....dog could do ANYTHING from paying bills to knowing which was the UP elevator button. My friend is now on her second dog and has two other retired one living with her.

    Look them up. You'll be happy you did.
  9. by   researchrabbit
    Thanks for the link P_RN!
  10. by   2ndCareerRN
    myasthenia gravis may be a diagnosis you could use. Rare in peds though, but it does exist.

    http://www.lpch.org/DiseaseHealthInf.../myasgrav.html

    http://www.myasthenia.org/information/summary.htm


    bob
  11. by   researchrabbit
    Bob! Thanks! I would have never thought of that (you guys are GOOD!). From what I just read, it fits the story well...got my work cut out for me....
  12. by   OBNURSEHEATHER
    Good luck researchrabbit! Sounds cool!

    I agree that the diagnosis should be real. Have you decided on one yet?

    Heather
  13. by   delirium
    MD was my initial thought. Or CP.

    Does it have to be something congenital? Maybe he was in some kind of accident and sustained a neurological injury? Then you could deal with more complex issues such as loss of function, independence, etc.

    Or how about osteogenesis imperfecta? Born with multiple fractures, dwarfism, bones too brittle to support his weight so he is wheelchair bound?

    Oh there's that other disease.... what the heck is it called.... where bones break a lot but they regrow thicker but weaker.... and the thickness is in weird places, leading to progressive deformity and inability to ambulate.

    (I'm sort of stuck on bone diseases, I see)

    I think the OI would work well for you. Just my opinion.

    I write in my spare time, too.


    Edited to add: there's also progressive infantile (or juvenile, depending on the age of onset you wish) spinal muscular atrophy.
    Last edit by delirium on Feb 9, '03
  14. by   researchrabbit
    I am getting lots of good ideas here -- I do want something that most people aren't familiar with, something (probably) congenital that the family has been dealing with from day one. The independence issue does figure in the plot (thus the assistance dog). CP and MD are the two I'd originally considered, but OI and MG sound very interesting; both would work in different ways. I will have to look at the progressive infantile spinal muscular atrophy; that's one I've never even heard of.

    What do you write, Reb?

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