23 replies to this topic

[feather]

I am the mother of a T9-T10 para, he was just 21 and just starting out. Now he has no idea what he wants to do or if it is even worth it, I say of course it is worth it to live life to the fullest he can.

My son is the most stuborn person I have ever known and that before his accident. He still does not drive and sees no reason to really want to as he has pain all the time and being in a car really causes his pain to worsen. He says that if he could find a job he does not see how he could keep it as his days are unsure as to how he feels.

He has gone out a few times and had problems with his bag and to self cath he only has seconds to get to it or wets himself. He is a very smart person and he just seems to be wasteing himself away.

He did tell me once that he just wants to fade into the background and have his life then fade away also. it is almost 5 years since his accident and I really do not know what to do. He has so much he could do but just has no interest any more. I can relate to that as I do not find much interesting any more either. I love to just spend time with him playing games or watching movies or talking, he is very smart and keeps up on all the news and latest research in all areas. We have a great time together and laugh alot at times.

My son never had a girlfriend never really got out into the world and I think his age was really just a bad time for his accident to happen.


Really I just do not know what to do to get him to see that life is not really over for him just because it is now so different he is still a great person.

feather

[qbounce]

He's a fully functioning paraplegic, right? I'd recommend getting him to a gym or having him do some kind of physical activity where he can regain his confidence. If he got in contact with other paras/ quads dealing with the same issues, they might have some tips regarding his urine issues. There are many answers out there, all he has to do is ask.

[Tetracyclone]

Houston, you have a problem. I suspect it is not one a mother can do too much with, but you both might gain if YOU set the example of getting some interests in life. Engage in life! Right now he is just a chip off the old block.

[chrisarnold6]

qbounce, on 09 January 2011 - 12:19 AM, said:

He's a fully functioning paraplegic, right? I'd recommend getting him to a gym or having him do some kind of physical activity where he can regain his confidence. If he got in contact with other paras/ quads dealing with the same issues, they might have some tips regarding his urine issues. There are many answers out there, all he has to do is ask.

Very sound advice.

[McTavish]

Feather if you could just get your son to realize that there is a lot he can still do and he should try and focus on that rather than the things he can't do. I know it is not easy and as he is very young it is a terrible shame to see him just fading into the background. Has he no friends who could bring him out socially, life is not ended just because he is in a wheelchair. There is a lot of help for people of his age if he just looks for it. All the best and keep us posted on his developments.

[S&W Winger]

Has he joined this forum? And maybe he has questions/concerns he could discuss privately with a few of the guys here...maybe NOT his Mom...

What interests did he have before his accident? Aptitudes? I understand he was/is young, but there may be things that could still grab him and keep him centered...

Please encourage him to become a member and get to know a few people here, as we do understand and have felt/do feel the same ways...

But for reason(s) we are managing to participate in Life still and perhaps he will be able to uncover his own purpose(s) for Living...

Please let him know that we are here for him and that we understand...

Edited by S&W Winger, 09 January 2011 - 04:00 PM.

[xxm]

I sugest that you tell him about this forum .
He will see that he is not the only one in this situation and there are people that are much worse but live and even work with pain. I also suppose that may be he is secretely hoping to recover as he was before SCI. This was my case the first 3 years afrer my injury but once I realized the truth I never turned back and found again this wonderfull world.

Don't give up - may be he needs more time.
He is still very,very young and the world outside is waiting for him.

Rudy

[Wheelsonfire]

Hello Mrs. Feather,

This will be no surprise to most as to my views for one who is feeling sorry for themselves, and mark my words, your son is feeling sorry for himself.

You need to stop listening to his rants and give him a boot in the arse, when he pipes up with his "oh poor me" attitude, you don't want to become an enabler, you may be sympathetic to his concerns but for his sake, you need to take a stance, advise that you are no longer taking part in his self destruction, he needs to find a reason to live, he needs to step into the unknown and open his eyes to the fact that this is his life and he either bites the bullet or swallows it, yes, it may seem harsh, but so is life, if he is waiting for it to be fair, he will be waiting a long time.

For some, there is a grieving process, for some there is not, when something is out of ones hands, it's best to take the bull by the horns and enjoy the ride.
I too were his age when hitting the chair, but that's the cards that were dealt and I decided to play rather than fold. As peeps have said, he needs to find an interest without plug-ins(stipulations), in other words, "I want to do this, but what about that" forget about the "that" and deal with the "that" when he encounters it.

Make him aware of this forum, don't push him to browse or join, let that be his choice.
There is no harm in voicing as to what you may have read on here as to the type of obstacles that are overcome day in and day out by others in his position, yes, he may say, "well, whoop dee do for them" that is a defence on his behalf, this life is not for all but each at least gives it a hell of a lash.

Whatever his issues are, from pain to bladder/bowel, there are answers within these walls.
And I am always here to give him a boot in the arse when it is needed.

Life is good, it may bring difficulties but who here disabled or not has it sweet 24/7/365 and 366 on leap years!!!!!

I wish you the best in finding your son all over again.

[EBrown]

Hi there. I am the wife of a C4 quadreplegic who was 26 when his accident happened and we are one of the lucky ones that very rarely has a bad day. Martin is positive and keeps himself extremely busy. Even though his body is immobile his mind is certainly MORE than active. In fact, he won his category in a competition for Entrepreneurs last year and his business( which he started after his accident) keeps him on the go. Check out his website Martin's website and the attached article  Entrepreneur Mag Dec 2010.pdf   87.02K   74 downloads. Maybe it inspires you and your son. Best wishes.

[feather]

Wheelsonfire, on 09 January 2011 - 06:11 PM, said:

Hello Mrs. Feather,

This will be no surprise to most as to my views for one who is feeling sorry for themselves, and mark my words, your son is feeling sorry for himself.

You need to stop listening to his rants and give him a boot in the arse, when he pipes up with his "oh poor me" attitude, you don't want to become an enabler, you may be sympathetic to his concerns but for his sake, you need to take a stance, advise that you are no longer taking part in his self destruction, he needs to find a reason to live, he needs to step into the unknown and open his eyes to the fact that this is his life and he either bites the bullet or swallows it, yes, it may seem harsh, but so is life, if he is waiting for it to be fair, he will be waiting a long time.

For some, there is a grieving process, for some there is not, when something is out of ones hands, it's best to take the bull by the horns and enjoy the ride.
I too were his age when hitting the chair, but that's the cards that were dealt and I decided to play rather than fold. As peeps have said, he needs to find an interest without plug-ins(stipulations), in other words, "I want to do this, but what about that" forget about the "that" and deal with the "that" when he encounters it.

Make him aware of this forum, don't push him to browse or join, let that be his choice.
There is no harm in voicing as to what you may have read on here as to the type of obstacles that are overcome day in and day out by others in his position, yes, he may say, "well, whoop dee do for them" that is a defence on his behalf, this life is not for all but each at least gives it a hell of a lash.

Whatever his issues are, from pain to bladder/bowel, there are answers within these walls.
And I am always here to give him a boot in the arse when it is needed.

Life is good, it may bring difficulties but who here disabled or not has it sweet 24/7/365 and 366 on leap years!!!!!

I wish you the best in finding your son all over again.

I agree with what everyone has had to say, I have told him about this forum and gave him the address, he says he is not interested.

I did in the past try to tell him to just stop and all he did was get mad, but you are right I have to start all over again and just tell him to get off his poor me and get on with life.
Today for example he talked about how he was a failure and it gets to him that his old buddy cuts him down that he has not seen in 4 years and brags about how good he is doing and how bad my son is doing. Well I told him he is so smart and that he has alot to offer to this world and he is the only one who can change his additude.

It is his lack of motivation and he admits that he says that all flew out the window when he had his accident. Really it does make me mad when he talks that way as I do not give up and he is really just blameing his self for his accident, it was his but it was an accident!

He does go out to a movie once in a while with his friend but he has not gone fishing yet and he misses that but most of all he misses his motorcycle and riding. We have told him that he could still ride on a 3 wheeler but he says no it is not the same!!! Nothing will be the same and he just can not accept that and move on to live while he is here.

Right now his friend is over and they will be up all night, they do that a few times a week.

I do have other things I do and I do have other interests being in my 50's now I just do not care to do the same things I used to do and I do keep busy working full time and once in awhile we go out with friends. We do have family over once in awhile also so I do not just sit at home but I do not want to be gone as much either knowing my son is not living out loud makes it hard for me to want to. I hope I am not keeping him down.

It really is just so hard to not want to get him so upset and push him but it is the right thing to do. I sure would be doing it if he was walking, kicking his butt. I will try and see if he will get to driving again and looking for a job and working out would be great. He never did have much physical therapy, none really, I would love to see him go to physical therapy they could maybe help with his pain.

Thanks so much for your thoughts

[feather]

xxm, on 09 January 2011 - 05:50 PM, said:

I sugest that you tell him about this forum .
He will see that he is not the only one in this situation and there are people that are much worse but live and even work with pain. I also suppose that may be he is secretely hoping to recover as he was before SCI. This was my case the first 3 years afrer my injury but once I realized the truth I never turned back and found again this wonderfull world.

Don't give up - may be he needs more time.
He is still very,very young and the world outside is waiting for him.

Rudy

You are right about him thinking that some day he will walk again, I know he talks about that and keeps checking on the stem cell research program. he does say he does not think he will but I do think in his heart he is not ready to give up the dream of walking. But I would think that he would want to keep doing things so he would be ready? i guess I don't understand, you do and he does and that is all that matters.

I sure would like to see him check out this forum as there are so many great people and good advise and friendships to gain.

[August]

feather, on 11 January 2011 - 12:17 AM, said:

[ I do not want to be gone as much either knowing my son is not living out loud makes it hard for me to want to.


It really is just so hard to not want to get him so upset and push him but it is the right thing to do. I sure would be doing it if he was walking, kicking his butt.

Thanks so much for your thoughts

My son is the same age as yours and I can relate to your situation. I have so much to say and although I don't have time to say it all at the moment, I don't want to let this pass without expressing my empathy.
I, too, won't do things anymore (such as holidays) until my son has done them again. I, too , find pushing him problematic. With able-bodied youngsters it is easy to say 'shape up or ship out' but it is not an option now - at least not while they are still so young.
The role of parent in your situation (and mine!!) is incredibly tough. We are dealing with young adults who are forced to live in an environment in which they are dependents, whether they are able to be physically independent or not. The dynamics become very challenging.
I was recently told by someone who has a great deal of experience in the field that many people who were injured at a young age never overcome the shock and are unable get on with their new lives. Your son's reaction is thus very common.
He is still very young with a lot of maturing yet to do. Because of the circumstances, he lacks the usual opportunities to develop himself as an adult - such as dealing with rents, finances, life on one's own - so the maturation process is going to be slower.

Meanwhile, you say that he is bright and interested in the world. Would he be interested in a correspondence course of some sort? In the UK we have the Open University which offers all sorts of courses. While it would not get your son out and about, it would help him to develop himself intellectually, help him learn self-discipline and may inspire interests which will eventually encourage him to look beyond the house.

You say you have a lot of fun together, so he obviously loves you and will probably not want to deliberately make you unhappy. It might be worth spelling out how anxious his attitude is making you, although, of course, many youngsters find it hard to treat their parents as real people with needs of their own!

All the very best

August

[feather]

I still do many things just at home, we have all the holidays at our house with family and that is alot, 40 people or more at times and he does just fine. We have the 4th of july here, that is a big one as we live out of town and we can shoot off fireworks all day and night!

I will not stop doing things that I know he can weather he likes it or not, he has said that the days get too long and too much at time with everyone here, I just told him then go lay down for awhile no one will care, everyone else finds space when they want to also.

I really would like to get a pool put in so that swimming would be available for him and that will create alot of pool get togethers as well and give his friends things to do as well.

I know a friend whose father was disabled in WWII and there was always someone at thier house everyday to have fun with and keep him going.

I really do not see a need for him to live on his own as our home is all on one floor and we have adaped all living spaces except I want a front loading washer and an oven door that opens to the side instead of down. He likes his music loud, he plays the base, and he likes to shoot his guns, we have targets set up in the backyard as he used to shoot trap and can from out deck.

He has his own checking account and credit card and does all his shopping on-line, I buy his clothes as he always did hate stores so does my husband.

I guess if I look at it he has come along way and if he starts driving agian will go further.

it will be 5 years this spring-summer and I guess that will make a difference this summer. WE ARE GOING TO GET HIM FISHING.

It sounds like you are having more of a problem then I am in some areas, please start having holidays again at home with your family, he will fight it but do it anyway.

Thank you for sharing all your thoughts with me.

feather

[August]

feather, on 11 January 2011 - 04:32 PM, said:

I still do many things just at home, we have all the holidays at our house with family and that is alot, 40 people or more at times and he does just fine. We have the 4th of july here, that is a big one as we live out of town and we can shoot off fireworks all day and night!

I will not stop doing things that I know he can weather he likes it or not, he has said that the days get too long and too much at time with everyone here, I just told him then go lay down for awhile no one will care, everyone else finds space when they want to also.

I really would like to get a pool put in so that swimming would be available for him and that will create alot of pool get togethers as well and give his friends things to do as well.

I know a friend whose father was disabled in WWII and there was always someone at thier house everyday to have fun with and keep him going.

I really do not see a need for him to live on his own as our home is all on one floor and we have adaped all living spaces except I want a front loading washer and an oven door that opens to the side instead of down. He likes his music loud, he plays the base, and he likes to shoot his guns, we have targets set up in the backyard as he used to shoot trap and can from out deck.

He has his own checking account and credit card and does all his shopping on-line, I buy his clothes as he always did hate stores so does my husband.

I guess if I look at it he has come along way and if he starts driving agian will go further.

it will be 5 years this spring-summer and I guess that will make a difference this summer. WE ARE GOING TO GET HIM FISHING.

It sounds like you are having more of a problem then I am in some areas, please start having holidays again at home with your family, he will fight it but do it anyway.

Thank you for sharing all your thoughts with me.

feather

I think you misunderstood me - it's that British/American English thing. By not having holidays, I meant not going away on holiday.

I am glad you now feel he has actually come a long way.

August

[feather]

Oh, right I forgot about that. We will go away for a few days at a time other then that no we do not go on vacations any more. At times I think I want to then I don't have the money right now any way.

We really do not have our son pay for much as he has so little. We do plan on leaving him the house and our other assets so he will be well taken care of.

Since I have been here I feel so much better, more positive and hopful that he will have a better life. He was in collage at the time and was working in his field. His job choices now will be alot different then before as he was interested in very physical type jobs. Right now with the economey the way it is he will have to really search hard. But he has alot going for him as far as a resume goes.

I just wish I could get him on a bike again as he misses that and at least once a week he mentions how he would love to get back on his bike. I know alot of people who said they would build one just for him, it is all up to him at this point to change his mind about riding a 3 wheeler.

How is your son and what does he do?

feather

[Tetracyclone]

Feather,

Try locating some off the many photos of people on their bikes on these threads, then download them and print. Do not say a word, just put them on his wall.

[lbcline04]

feather, on 12 January 2011 - 02:43 PM, said:

Oh, right I forgot about that. We will go away for a few days at a time other then that no we do not go on vacations any more. At times I think I want to then I don't have the money right now any way.

We really do not have our son pay for much as he has so little. We do plan on leaving him the house and our other assets so he will be well taken care of.

Since I have been here I feel so much better, more positive and hopful that he will have a better life. He was in collage at the time and was working in his field. His job choices now will be alot different then before as he was interested in very physical type jobs. Right now with the economey the way it is he will have to really search hard. But he has alot going for him as far as a resume goes.

I just wish I could get him on a bike again as he misses that and at least once a week he mentions how he would love to get back on his bike. I know alot of people who said they would build one just for him, it is all up to him at this point to change his mind about riding a 3 wheeler.

How is your son and what does he do?

feather

My bf Matt is a 24 y/o para. He was riding dirtbikes and 4 wheelers at 5, had his accident at 17 and still rides. He took me on his racing 4 wheeler Christmas Day. Scared the crap out of me...going 60! Then I got off so he could show me the wheelies he can do. When he rides his dirtbike, he tapes his feet to the peddles and then his family stacks haybales so when he's done he can pull into the bales and lean against them. He said as soon as he was out of the hospital he was riding 4 wheelers and then gradually advanced back to his dirtbike. Now he's doing wheelers and doing jumps! :-)

I read this to Matt and if you don't mind, he asked where you lived?

Edited by lbcline04, 14 January 2011 - 04:24 AM.

[Tetracyclone]

lbcline04, on 14 January 2011 - 04:16 AM, said:

My bf Matt is a 24 y/o para. He was riding dirtbikes and 4 wheelers at 5, had his accident at 17 and still rides. He took me on his racing 4 wheeler Christmas Day. Scared the crap out of me...going 60! Then I got off so he could show me the wheelies he can do. When he rides his dirtbike, he tapes his feet to the peddles and then his family stacks haybales so when he's done he can pull into the bales and lean against them. He said as soon as he was out of the hospital he was riding 4 wheelers and then gradually advanced back to his dirtbike. Now he's doing wheelers and doing jumps! :-)

I read this to Matt and if you don't mind, he asked where you lived?

Please explain how he tapes his feet to the pedals without putting himself in danger of ripping a foot off if he falls off the bike.

[August]

feather, on 12 January 2011 - 02:43 PM, said:

How is your son and what does he do?

feather

My son is doing well. It is a gradual process, but like you, once one reflects on what has been achieved, one realises how much progress has been made. If you don't mind, I won't talk about what he does as I know he would hate me to be discussing him in a specific, identifiable way on an open forum.

All the best.

August

[lbcline04]

Tetracyclone, on 14 January 2011 - 09:24 AM, said:

lbcline04, on 14 January 2011 - 04:16 AM, said:

My bf Matt is a 24 y/o para. He was riding dirtbikes and 4 wheelers at 5, had his accident at 17 and still rides. He took me on his racing 4 wheeler Christmas Day. Scared the crap out of me...going 60! Then I got off so he could show me the wheelies he can do. When he rides his dirtbike, he tapes his feet to the peddles and then his family stacks haybales so when he's done he can pull into the bales and lean against them. He said as soon as he was out of the hospital he was riding 4 wheelers and then gradually advanced back to his dirtbike. Now he's doing wheelers and doing jumps! :-)

I read this to Matt and if you don't mind, he asked where you lived?

Please explain how he tapes his feet to the pedals without putting himself in danger of ripping a foot off if he falls off the bike.

Haha honestly I don't think he cares. He loves riding and he'll do whatever he can to continue. He just uses duct tape and tapes his shoes/feet to the pedals. He hasn't *knock on wood* fallen yet! He rides his brothers street bike too on occasion. I don't reccomend this to everyone but this seems to work for him and makes him happy. His mom and I usually cringe everytime we hear one of his 'toys' rev up!

[feather]

So let me get this clear, he tapes his shoes to the foot-pegs and starts off from the hay bales? That is so cool, but then he has to keep going or how would he put his foot down to make a curve or, I really don't get how on earth he does it?? But that is way cool.

My son took out the 4 wheeler one day a few years ago and was doing donuts in the back yard, he dumped it over and could not get it back up and crawled back up to the house. He said he would not do that again as if he can not lift it he should not be driving it???

I would like to get him a smaller 4 wheeler so it would be lighter for and I will mention how your son rides his dirt bike now. I would sure like to know how he makes turns and such with out putting his foot down.

Like I mentioned before he really misses riding and I think that would make him feel so much better if he could ride again. I think we have to try it. What level is your son's injury? My son is from the waist down so hard for him to balance, but anything can be done if you try I think.

I will print out the pictures of bikes for my son, that is a good idea.

feather

[lbcline04]

Matts my bf and he is a T12 para. He has a pingel electric shifter on his 4 wheel so he can shift by hand. He uses a rachet strap and hooks it from one side of the frame to the other to keep him secured on jumps. To ride dirtbikes he tapes his feet to the pegs and has someone hold the bike up while he clutches it. He balances himself around turns. He said to tell your son to always keep his cell in his pocket (not on the bike or 4 wheeler) so if he does fall he can call for help. To be safer on a dirtbike he should put a crashbar on the front so if he lays down the bike it won't crush his legs. He said you can also put a different seat on them with backrest for back and hip support to stay more stable. He said if your son has any questions to email me and he'll give him his # so he can text him. Lbcline04@msn.com

After Matts accident he went to the Harley Davidson Motorcycle school and now he's a HD Certified Tech and a part specialist. He's very knowledgable on all the stuff. He def didn't let his accident stop him do anything he wanted. While he was in the hospital he had a mentor kinda guy that worked with him. His mentor was a para that was older then him and already been through it all so he was able to talk and relate to him like no one else could. Maybe you could see if they have any programs around for him where you live.

[Tetracyclone]

lbcline04, on 14 January 2011 - 02:23 PM, said:

Tetracyclone, on 14 January 2011 - 09:24 AM, said:

lbcline04, on 14 January 2011 - 04:16 AM, said:

My bf Matt is a 24 y/o para. He was riding dirtbikes and 4 wheelers at 5, had his accident at 17 and still rides. He took me on his racing 4 wheeler Christmas Day. Scared the crap out of me...going 60! Then I got off so he could show me the wheelies he can do. When he rides his dirtbike, he tapes his feet to the peddles and then his family stacks haybales so when he's done he can pull into the bales and lean against them. He said as soon as he was out of the hospital he was riding 4 wheelers and then gradually advanced back to his dirtbike. Now he's doing wheelers and doing jumps! :-)

I read this to Matt and if you don't mind, he asked where you lived?

Please explain how he tapes his feet to the pedals without putting himself in danger of ripping a foot off if he falls off the bike.

Haha honestly I don't think he cares. He loves riding and he'll do whatever he can to continue. He just uses duct tape and tapes his shoes/feet to the pedals. He hasn't *knock on wood* fallen yet! He rides his brothers street bike too on occasion. I don't reccomend this to everyone but this seems to work for him and makes him happy. His mom and I usually cringe everytime we hear one of his 'toys' rev up!

Okay! We have here a prime candidate for the Darwin award!

[GoldenYears]

Let me tell you -- as the oldest of 7 siblings, Mother of 8, the Grandmother of 14, the Great Granny of 1, every parent deserves a special place in heaven. Would I have knowingly done this to me? Become a "parent" knowing what I now know? Nope. I always thought humans were cutie pies.

I do not know of a more difficult job than parenting, be it to the able or disabled children. And I'm convinced nature should not have blessed humans with decision making brains -- or a mouth, until the age of 30 and at that point should have been magically given perfectly reasoning brains and quiet mouths.

Humans are rascals, plain and simple. Hounds from hell, actually. The worse of it? They talk.

Around here when a human pulls stunts, I tell them "do you actually think you invented this behavior, that it's something new?" -- ol Granny has been around the Maypole so many times I can tell you how many steps it takes.

And lately there have been some angry chats with the Giver of Life about the mountains I can't climb. Then I fluff up and feel better.

What mountains? I ain't seen no mountains in my living room.

Not lookin for 'em under this roof, and nobody better dump a mountain in here either. Or else they can sleep in the chicken house.

That usually turns their mountains into a puff of dust.

Goldie