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Criticalmass

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Nah, every time my husband sits down to start wrapping and rebuilding, he tells me to come sit, time for me to learn, but I always find "something i got to do/get done" and so far it has worked. I dont need that frustration of not being able to do it!

oh sure, you "claim" to be half dumb, yet you get hubby to make all the coils...

that's how women have been fooling men for centuries! ;)[/QUOTE]

Yeah, but men do something similar. They'll do a chore, and do it so badly the woman doesn't ask again. lol.
 

Seanchai

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Seanchai,

you can cheat on re-coiling. these are the cheapest i can find, 5 for 3 bucks:

Stardust v3 Replacement Coils

Saw those, almost grabbed some, decided it would be self sabotage to have them around from the start. Thanks for the link though, I've now bookmarked it in case the time investment ends up being silly in the long term, *after* I've learnt to build them. :)

Seanchai, love your attitude!! My son, age 20, also has CP and seizure disorder, so your story is close to my heart!

Thanks, cruff! How's your son doing? The toughest time for us always seems to be right around that age... no longer having the framework of IDEA etc and all the resources it brings with it. Truth be told, my family is *still* trying to cobble together all the disparate resources available for "disabled adults" - it's all so centralized till you hit 18 or so, and then pfft, bon voyage, try not to end up on the street!

My exit IEP consisted of "OMG, you're graduating at 16! Are you going to college?" Me: "Yes, {well known private college}." Itinerate: "Awesome! Have fun!".... and then they walked out. Holy crap, what do you mean have fun?! I can't even drive yet... do I get help with that? (Nope. My fault for graduating early.) What if this doesn't work out? (That'd be my problem.) Who do I call if I have problems now? (Nobody knows.) Okay, I'm a pretty good advocate, but you can't tell me who to advocate *to*? (Nope.) ACK! It was enough to make me want to go, "Can I retake the graduation exam so I can flunk it and stay here another year so I can get my advocacy and resources ducks in a row?" Sadly, that wasn't an option, so the big thing I tell people with CP these days is to start working on all that stuff the second they hit high school, because you get dropped like a hot potato after that... as you probably know. If I had more energy for out-and-about these days, I'd be working on a way to plug the giant gaping abyss in that system... but sadly, everything is so decentralized and state dependent that I think there'd need to be about fifteen of me to do that job. Haven't stopped turning it over in my mind, though... gotta be a better way to do things than the current method.

Hang in there.
 

Seanchai

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Quite possibly! Bookmarked, thanks! I'll be trying by hand first, just cause I always like to start with the least amount of tools and work my way up, but that looks like a handy gizmo to have around, and is very similar to the kind of rig I've been thinking I might have to build in order to do more than one coil a week or so. (I know going in that my hands won't be able to do more than one a week if I'm freehanding it... my fingers lock up after a while of doing that kind of detail work, and if I push it too far, they'll *swell* up, and then I can't do things I *need* to do, like button my own shirt or use a dinner knife. It's a balance.)

So yeah, thanks, that may very well go into my little arsenal of handy gadgets.
 

Cheryl75

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Seanchai, yes, my husband and I learned very early, like when he was finishing Kindergarden, that the best advocates for him will be us, his parents! And this has been true since that realization! In his High School years, the shift was apparent, they just wanted him to "graduate" so we wouldnt be over at the school so often in their faces!
 

Seanchai

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Seanchai, yes, my husband and I learned very early, like when he was finishing Kindergarden, that the best advocates for him will be us, his parents! And this has been true since that realization! In his High School years, the shift was apparent, they just wanted him to "graduate" so we wouldnt be over at the school so often in their faces!

Absolutely... I tell my mom every day that I wouldn't be who I am without her. My dad, too, as much as he's been the absentee parent since my sister and I hit adulthood - he was a great dad when we were young. But mom always took the brunt of it, as moms usually do.... and I'll never be able to repay her for that, no matter how many times I fix her van (or the tv, or the light switch, or the computer, or.... but God, I do it all so gladly, because she's an incredible woman and I owe her all that and so much more). She's the main reason why I ended up on this forum, actually... I needed to make sure I stayed off the smokes (which I knew I was an idiot for starting), but more than that, I needed *her* to quit, because her health isn't good, and I want her around forever, or as close to forever as I can reasonably ask for. Not because she's a great advocate, although she is, but she's also, now that I'm grown, one of my closest friends. I'm finally old enough to repay her, if only by being her sounding board and keeping things running around here. My sister never will be, in a lot of ways... she'll always be about seven, functionally, so she'll always need looking after.

It's funny, I was lucky to go to a really great high school with an amazing principal who treated me just like any other student. Since *his* attitude was so great, so were all the other teachers. Then the administration changed hands, and the attitude went downhill, just in time for my sister to start high school... in short order, it became clear that the new admin wanted nothing to do with disabled students whatsoever, be they mainstreamed or in special ed, and the special ed classrooms were little more than holding pens of chaos. My sister pretty much forgot everything she'd learnt in middle school, and certainly didn't learn anything more... and then, they had the gall to ask to keep her for another year. Cue mom and I going "For what purpose?!" She was miserable, not learning anything, not going on job skills or getting work experience (they claimed she "wasn't ready"... funny, she'd been doing it all through middle school!) The attitude comes from the top, good or bad... holds true for college and work, too, as I found out.

We've been having to try to re-teach my sister everything she forgot in those years, ever since... and of course, now, she's an adult (technically) and thus indignantly reminds us she's *done* with school... and we have to counter that yes, she is, but she did know how to tell time and count change once, so we know she *can*, and she's going to relearn at least that much if it kills us.

Some days, if feels like it just might!
 

Seanchai

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Seanchai, I really appreciate the stories you've shared and how much you've achieved despite the difficulties. :toast:

My pleasure. Haven't achieved half of what I planned to, at least not yet, but I try to work some good now and then from my little corner of the world. And sharing my story is the least I can do for the folks around here, who've already taught me an amazing amount in a very short period of time. I'm grateful for you guys, too, and your seemingly endless collective knowledge.
 

Uno mas

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I enjoy all of you for your uniqueness very very much. Thank you.
We're all so different but also all so much the same, ya know?

It is actually amazing that we all kind of found our way here and just hung around, really enjoy my time on this thread with my MBV friends :)
 

Stoneface

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I enjoy all of you for your uniqueness very very much. Thank you.
We're all so different but also all so much the same, ya know?
It is actually amazing that we all kind of found our way here and just hung around, really enjoy my time on this thread with my MBV friends :)
Back at ya Uno Mas....and everybody else........great to have good peeps in life !!!!!!!!
Agreed.

(Now I feel all warm and fuzzy :blink:)
 
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