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Thread: son c5/c6 15 months post :(

  1. #21
    Senior Member wheeliecoach's Avatar
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    Again...not knowing where you are in New England...but in Connecticut there are lots of activities that quads like your son are into. Gaylord Hospital sponsors the quad rugby team the Connecticut Jammers, and also has a support group set up there. There are also ski trips (both water and snow), tennis (that yes...quads do play), etc. Awesome that he is working so hard at regaining independence! Even though I have a progressive spinal disease, I keep working on keeping my independence too. If you or he ever wants to talk, or get more information about the programs out here...let me know.
    "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

  2. #22

    Please fill me in

    Can you tell me what he has and does not in the way of feeling and movement, I just saw your post I would like to offer at least some advise maybe. Im older than your son but 2 year post injury so I can kinda relate to his feelings at this point and maybe offer incouragement. Project Walk is an awsome place.
    Craig Hammons








    Quote Originally Posted by new dimension View Post
    Mind you my son does not share a lot of his feelings....yesterday he briefly shared his grief and I am not sure I can help. I won't go into details but you can imagine the grief and his loss of will to live like this. We are currently far from home at Project Walk in California working towards good health and recovery and are trying to plan for his independence from his parents for him in the near future as a typical 21 year old that is what he needs we think emotionally. We are from a small town in New England and there is not much to offer there most of his friends are away at college and have moved on in their lives and therapy and medical care are very very limited for someone with a spinal cord injury. He was away at college for 1.5 years prior to his accident living his life and now everything has gone full circle....now dependent on mom, dad and others 24/7. He even mentioned checking himself in to a place with 24/7 care (nursing home)...he really has no clue as to the horrors of that existence. You know..... he refuses counseling and or anti depressants ...where to go from here???

  3. #23
    He's lucky to be able to go to PW. I've always thought if my kid was paralyzed I'd move heaven and earth to get him to one of those places.

    But, as always, there comes the question-Now what?

    I can't tell you the number of kids I've seen his age, at this same stage, in that exact place. At about 2 yrs. post, the pursuit of exercise-based rehab has to lead them on.

    One of them I know is in law school now. One went back to the family business and plays quad rugby.

    What are his functional limitations? Not everybody gets to be so independent that they live alone w/ no outside help, despite what fuentes says, it's not because they are lazy. If your son was lazy, he wouldn't be at Project Walk!

    I know ppl of about every level that went back to school. Same with living alone. A friend lives alone...somebody has to get him out of bed and put him back to bed every night. He hires PCA's. He can cath, once he's out of bed, and the PCA does bowels/bath. He goes to work everyday, had a daughter pre-sci, wants a girlfriend. It's a full life.

    Other ppl take surgical routes to independence. Suprapubic caths, tendon transfers and colostomies aren't anyone's idea of fun, but if they let you live alone w/ no help, wouldn't you consider them?

    What does he want to study?

    Is he interested in sports? Life Rolls On is in San Diego, I think. They take quads out surfing. Their founder is Jesse Billauer, a young quad that seems to hang out with Paris Hilton an awful lot. Jesse has a way of reaching kids. I'm an incomplete quad that scuba dives. I know a lot of quad guys that got a new lease on life via rugby. Have you seen Murderball?

    I disagree about CC being bad for him. Fuentes is talking crap there. He said himself, the first 5 years are hell. Hell is easier if you know you aren't alone! The internet wasn't invented when fuentes got injured. I've always been grateful for it, myself. And there ARE kids (and adults) here from every walk of life, kicking ass and taking names despite sci. They inspire me endlessly.

    Mr. Coffee. Rehab Rhino. Kiran. Christopher, cspan, SusanM, buckwheat, chaz19, Saorsa, I could go on and on.

    Now your son may not be ready for CC. It took me a year, it was all so shocking. Eventually you learn that knowledge is power, and is about the only weapon against sci.

    If I were him, I'd resist moving to Vermont. Too much snow and winter. Larger communities have more to offer a quad. But I do know a lot of them that survive New England, mostly in larger towns. Saorsa moved out on his own a year or 2 ago. He just sat down and figured out how. He didn't have your son's support system or assets, but he did it anyway.

    I think your son will too. I'm kind of shocked he isn't going out in San Diego. Jesse and Buckwheat had the time of their lives there, once they got situated. (They were roommates.)

    Tell him I said good luck...one survivor to another.

  4. #24
    Quote Originally Posted by Obieone View Post
    Ah fuente .... you may have crossed a line with me here making such a sweeping generalization .... or did I misunderstand you?

    Obieone
    ETA - there are many many people visiting this site and after 10 years+ here I think I can safely say that's a totally inaccurate statement.
    Oh, he crossed it, alright. He went there. I'm again in the "Let's Punch Fuentes" club. WAYYYYY too full of yourself on this one, John. The internet wasn't invented when you got hurt. You can't speak of what you don't know.

    New dimension: I hope you'll consider the source on the statement of fuentes, that he wouldn't let your 21 quad son visit CC because there are way too many lazy-asses. There are many subjects fuentes, aka John, can advise you on. Wheelchairs. Relationships and sexuality. Exercise. Injecting steroids. Transfers. Homebuilding. Nutrition. Never being seen w/ another wheeler for fear of looking like a freak show. Never dating a quad chick. These are all things on which he has firm (and sometimes, firmly misguided) opinions.

    But his mouth just overran his brain with the statement about lazy-asses. Independence often has more to do with injury than energy. The spinal cord is the boss. Anyone that believes otherwise is DELUSIONAL. I am an incomplete quad that regained walking, is fully independent, but then got Graves disease. I travel, I scuba dive, I'm a wife and a mom and an advocate, and I don't judge people whose injuries rendered their lives less active.

    Also-I'm sure you know, nobody controls a 21 year old's internet surfing. Bwaahaaahaa. Fuentes doesn't know much about kids, does he?
    Last edited by betheny; 03-13-2009 at 06:36 PM.

  5. #25
    Are Jesse and Buckwheat still here?....Bryan's friend from Vermont is here with us and he is a god send but on the same note has filled a void that he may have searched out on his own if he wasn't here. Does that make sense????

    Once again thank you all for sharing your thoughts..family and friends can not guide on this journey - having never lived it.

  6. #26
    Nope, they aren't. They're the ones in family biz/quad rugby and law school, respectively.

    I know what you mean exactly. Some new SCI's avoid change, even resist making new friends. It wasn't until I met and observed some of my own kind, so to speak, that l learned how to function in this world. I saw other quads doing things I wanted to do. I decided to watch them and figure out how they did it. That's where CC came in. Surprised your son hasn't met a posse out there in SD, but I think you just explained why.

  7. #27
    i disagree. to many here use cc as another reality, then there are those like me who find it entertaining. not a place for a new injury. to much whining , crying and pure laziness on the other hand there are some real fighters. even thou u took a shot at me beth, i respect you, your a tough bitch..

    Quote Originally Posted by betheny View Post
    Oh, he crossed it, alright. He went there. I'm again in the "Let's Punch Fuentes" club. WAYYYYY too full of yourself on this one, John. The internet wasn't invented when you got hurt. You can't speak of what you don't know.

    New dimension: I hope you'll consider the source on the statement of fuentes, that he wouldn't let your 21 quad son visit CC because there are way too many lazy-asses. There are many subjects fuentes, aka John, can advise you on. Wheelchairs. Relationships and sexuality. Exercise. Injecting steroids. Transfers. Homebuilding. Nutrition. Never being seen w/ another wheeler for fear of looking like a freak show. Never dating a quad chick. These are all things on which he has firm (and sometimes, firmly misguided) opinions.

    But his mouth just overran his brain with the statement about lazy-asses. Independence often has more to do with injury than energy. The spinal cord is the boss. Anyone that believes otherwise is DELUSIONAL. I am an incomplete quad that regained walking, is fully independent, but then got Graves disease. I travel, I scuba dive, I'm a wife and a mom and an advocate, and I don't judge people whose injuries rendered their lives less active.

    Also-I'm sure you know, nobody controls a 21 year old's internet surfing. Bwaahaaahaa. Fuentes doesn't know much about kids, does he?
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  8. #28
    Right back atcha, John, although I don't agree with you about this issue. And yes, I'm a tough bitch.

    There is just so much to learn about living w/ sci. People do whine...it's not easy! But I remember watching clc, just to figure out how he got in and out of public places with these heavy Oklahoma doors. I was isolated until I started learning from the ppl that went before.

    And we're not all whining. Everybody has bad days sometimes, sure. But what if her kid is wondering if he can ever go to Isla Mujeres, Mexico, without his parents? How to get accessible concert tickets? What all the rest of CC is doing this summer? How hard it is to fly post-SCI? If quads go to law school? What the odds are of getting laid if you're a wheeler? If scientists are really working for a cure? What kind of digital SLR camera works best for a quad? Is waterskiing hard? What kind of shoes work best for an SCI bridesmaid? What do you say to people that tell you to pray harder? What supplements do you take? How do you get your protein?

    I've seen posts today on those subjects, just off the top of my head.

    He can read it here, and not have to reinvent the wheel daily.

    It's hard enough, without having to learn every step of every activity the hard way. That is where CC comes in.

  9. #29
    I appreciate everyone's thoughts and have learned a great deal from CC but also find it overwhelming, scary and depressing at times. Need to limit my time on CC or I find myself consumed with worry about all the what if's.
    I am continually looking for inspiration...................

  10. #30
    I

    Quote Originally Posted by new dimension View Post
    I appreciate everyone's thoughts and have learned a great deal from CC but also find it overwhelming, scary and depressing at times. Need to limit my time on CC or I find myself consumed with worry about all the what if's.
    I am continually looking for inspiration...................
    I was the same way, there's a lot of scary stuff on here. I finally learned that, as scary and unbelievable as it may seem, this was my reality. I learned to listen to the oldtimers, and Wise and the SCI Nurses, to avoid mistakes and learn the right way to do things.

    A quad lives closer to the edge than an AB. But nonetheless, we gotta live. I tell my husband this all the time, even now, after 8 years.

    I couldn't read CC for over a year, and at first I posted then didn't check back for a month. I had received a warm welcome though.

    CC has literally saved lives. Figuratively, too. Anywhere on the internet you have to sort the wheat from the chaff. As you said, your family and friends haven't been down this road. But here at CC, we have.

    I think you've been really smart, getting your son to PW and then finding us. You're doing the right things. It's the steepest learning curve I've ever seen, SCI I mean.

    What does your son want to do now? And what is his physical condition?

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