[ryansmom]

My son is 22 years old and is a T5 para. He was injured 2 years ago in a car accident. He goes through hell everyday and I just don't know how to help him. Sure I take care of his wounds and clean him up, but I need to learn how to be a mother and help him start his life over again. If I try to push him--he gets mad. If I don't do anything, he thinks I don't care. He does not leave our home and lives much like a hermit. Any suggestions on how I can help him without pushing him? I might add that he still cannot identify himself as someone in a wheelchair and doesn't like the idea of peer counseling. He states that, "Just because they are in a wheelchair doesn't mean that know me."

[Para-pal]

my advice would be try to get him out more...with friends, family etc. my friend gets so bored and depressed if he doesnt have something to do on a daily basis( he is T4 para and 30 years old-1 year post injury)
he has also recently joined the YMCA. he goes 3 days a week which keeps him busy and has really helped him get strong...its been great for him mentally and physically...

[milosh]

yeah, i do agree with para-pal. get him out more... more social interactions... also let him work at least part-time... getting back to education [not neccessarily college... some course like foreign language is gonna be cool too] helps so much too.

it's somehow easier for us who're in wheelchair for the most of life.

[g-a-v-i-n]

What these guys are saying it totally right, the only way to move on is to take things one day at a time, things will work out, it will just take time...
Never loose hope....

[Joed]

Hi ryansmom....

I'm sensing that your son would be very resistive to even considering becoming more socially active right now. For him, so much is the unknown...and he's not even sure where or how he might fit in again. Scary stuff, especially for someone so young.

I agree, he does need to begin to expand his environment and test the waters, but getting him to that point might take some doing. Fear is holding him back, plain and simple.

Prior to his injury, had he had much exposure/experience to those with disabilities? If not, it might be helpful for him to watch some movies/documentaries like "Murderball", or better yet, take him to an event where wheelchair sports are being played. Helping him to find a comfortable level of positive identification with other, like-bodied people will help him to realize the possibilities.

We know that he hasn't lost himself...but he doesn't know that yet. Please tell him from me that everything he needs to enrich his life has been there all along. It was never in his legs anyway. And I'm guessing it's the part of him that he's talking about when he says that "Just because they are in a wheelchair doesn't mean that <they>know me." And he's right. But before he was injured, he could've turned that around and said, "Just because they are able-bodied, doesn't mean that they know me" and it would've been equally true.

I hope he'll eventually be able to broaden his idea of what it means to have a disability...and understand that it's something that each one of us defines for ourselves as we go about living our lives and seeking out happiness, just like everyone else. That being said, the possibilities are endless.

[milosh]

well, everything takes time. it takes plenty of time and lots of efforts.

in order to get a life well you should avoid perceiving yourself as a disabled person. actually most of us are not disabled really. simply we got some functions limited and we compensate it better or less good. hey, take a look around yourselves... a shit loads of ''ABs'' use their leg just to walk between toilet, fridge and couch. what didn't killed you, it has made you stronger.

the only real disability is mental one.

barriers exist only in our minds, not in reality.

[milosh]

joed, you've got a great point! i do agree with you! well, as i said, it's much different than in case of ourselves living as disabled since childhood. yeah, positive identification with other disabled people helped me so much too.

[ryansmom]

Thank you to everyone who has replied to my email. I get so lost sometimes that I myself would just like to lay in my bed and try to forget about everything. It breaks my heart to see my son in that chair. I guess I feel like part of him has died. Is that wrong and insensitive? There are no support groups in my area, and I just seem to fumble through everything that comes up. It really helps to be able to talk with people who have been through the ups and downs and know how to get to a happy medium. I cannot even percieve what you all have been through, but in my eyes, you are truly amazing and incredibly strong individuals. When Ryan was in Rehab, I met so many phenomenal people. He did really good when he was there, but as soon as we got back, he seemed to slip backwards. When I ask Ryan to go places with me to get him out of the house, he will come up with an excuse. I feel like once I get him out and he gets over that fear, he will be okay, but how do I get him started?

[milosh]

do you have some relative of his age or similar? also, some of his pre-SCI buddies? they can do so much for him.

after SCI part of us dies, surely. but... new part is born. that's with most accidents.

ups and downs are just normal... either disabled or AB. we all got 'em.

[HiltonP]

Where are his peers? . . .

school buddies?
college mates?
neighbourhood friends?
sports teammates?

No 22-year-old, disabled or able-bodied, wants to go out with his mother (no offence to you, it's just a fact of life), but he will go out with his peers. Where are they, and what are they doing to get him out of the house? That's where your solution lies.

[milosh]

hiltonp... we've got the same point and i do agree with you!

he had a girlfriend immediately prior to his accident? what happened to her and their relationship?

[Para-pal]

i mentioned in my post that my best pal goes to the YMCA 3 days a week.
there are a bunch of other guys there that are in chairs so they all bonded...
perhaps there is some kind of program in your area???

This post has been edited by Para-pal: 16 June 2006 - 06:54 PM

[Apparelyzed]

Well Para-Pal,

I was having a good day untill I read your post!

For the last fifteen years, I've always put a smile on my face, a British stiff upper lip and all that ****! In fact, my wife has only seen me cry 3 times in 15 years, once in hospital (it was a bad day!), once at my Mothers funeral, and once when my daughter was born.

The facts are that it has been hard though, even if I don't show it.

But I agree, it does suck, you lose your privacy, your independance, and your life.

People may read this and think what I'm saying is harsh, extreme and pityfull, but the fact remains that most of the people who suffered a spinal cord injury 100 years ago died. It is not by the grace of God that we survive today, but by medical science.

We have be rehabilatated to live our lives in the best way we can under present circumstances, and over time we become desensitised and conditioned to accepting our lives as being disabled. Of course everyone in society says we have rights just like AB's, but we all know that rule is uneven depending on postcode/zip code.

Sometimes it is best to be laid back (my preference!), and not let any insignificant inconvienience wind you up.

Sometimes it's good to be bitter and not to be content with our lives, at it gives us motivation to change ourselves, and others, for the better. Maybe he is feeling denile, sorrow, greivance, it's just that maybe he needs an outlet, he needs to let rip, blow a fuse, and sport is a great way to do this, or just put his fave' music on his headphones and let rip!

Ok, this reply is getting lost, and I'm losing the plot here.

If Ryan is a T5, he should be independant, be able to look after himself by now, do pressure lifts, turn himself in bed to prevent pressure sores etc. If he can't, what would he do if you weren't there.

Once he has learned to become independant, he will be reluctant to become dependant on a carer again, and the independance will be a great boost to his self esteme.

What I'm trying to say here is that he will find something to help him come to terms with what he's going through in his own time, it's just finding it that's the problem.

Maybe he should be gratefull he's alive ...
Maybe he should look forward to the fact he survived and can start a family, new life ...
Maybe he should start a new leaf, travel the world ...
Maybe he should just enjoy a blue sky, and the stars at night.

We all have something which gives us solace, he just needs to find it.

I'm done.

Simon.

p.s. it's late, does any of this make any sense?

[lune14]

Beautifully put!

[lune14]

I guess I chose an interesting time to read this particular thread as this Sat June 17th I "celebrate" the 25th year of my being a para. I say celebrate because I have much to be grateful for. My mother, who's wedding anniversary would have been the same day (my father recently passed away) has never understood my wanting to celebrate this day. I have to remind her that although it was a tragic day for all of us in the family, I am celebrating LIFE. That I survived that night (I was struck by an open car door and dragged 20 feet across the asphalt on my back) and I am here, healthy for the most part, and fortunate to have been able to live independently without too many complications. I was sixteen when I was injured and in my last two years of high school at the time. My accident occured during the summer holiday so I was introduced back to school that Fall season as "the girl in the wheelchair". It was a strange and difficult transition in life for me but being young I feel was a blessing. I personally feel most people are more resiliant at such a young age and rehab and life post rehab was an adventure in my mind. I was fortunate to have a father who supported my every independent thought/effort while my mother questioned my ability (out of love and concern of course).

The first year after I graduated from High school at age 18 I was basically stuck at home as my mother drove our only car to work all day, leaving my father and I stranded in our home out in the country. Most of my friends who had cars were off working now that school was done. I spent my days writing, working on calligraphy and painting, which had always been my hobbies. I lay in wait for the day my insurance settlement arrived so I could buy a vehicle. A year later when the settlement arrived, I bought a car and enrolled in college. I left college a year later to accept a job and a year after that moved out on my own. Although I lived very independently while living at home with my parents I never felt "free" to really be who/what I wanted until I got my own apartment. That move alone was one of the most liberating things I've ever experienced because I knew now that "I".... and only I had to take care of everything. All the decisions were mine now and instead of scaring me it excited me. I think independence, on any level, is one of THE most important things we can have in life as SCI's. Living on your own can really make a huge difference for a person socially as well. Independence can be pride for a great many people. I know it is for me because I know what it takes to live independently. My friends who have known me for the past 10-20 years often comment on "how easy [we] make it look to live independently.

One of the most encouraging things anyone has ever said to me was "you have such a positive attitude". I first heard that as I lay in the hospital 25 years ago.... but now when I hear it during a time when I feel life is just too difficult (especially in a chair) I am reminded how great it felt to be in love with life. That is empowering to me and it makes me crave that feeling again each day.

I wish I could send telepathic messages to your son ryansmom.... encouragement, strength, etc. I truly understand his situation but it's difficult for me to accept I suppose, as I've always been eager to change my negative feelings to positive ones. I don't feel you can 'drag" him anywhere , make him be more social... I think he needs to find that in himself. I must agree with the comments about being fearful however as I don't think we often recognize our own fear. I was blessed to have a girlfriend in high school who wouldn't let me ever sit around at home. Not that I declined offers to go out but she made certain I went anywhere and everywhere. I think I feared HER more than a flight of stairs covered in oil! LOL

I have no specific advice to offer you because I'm really not sure what I would do in your or your son's situation but I thought I'd share my own feelings ... who knows, maybe it will help you feel better or spark an idea ??? I think the others here have lent some great advice however. Wishing you both the very best!

[crash]

I am a 24 year-old t-12 parapalegic 3 months post-injury. The best suggestion on here so far has been to show your son the movie "murderball", at best he will love it and at worst it will make him feel stupid for feeling sorry for himself, at least that is what it did to me. Even so I am still very up and down. I talk to my roomate from rehab who is 22, it makes me feel good to know he's there experiencing what I am. Does your son know anyone his age in the same situation? I know you said he is resistant to peer-counseling.

Contact me if you think there is anything I could do to help.

[ryansmom]

Ryan watched the movie Murderball about three times approximately 6 months ago. At first he was very skeptical about the movie, but after he watched it, he was already to sign up for a team. He got online and found that he didn't qualify, so it pretty much ended there. There was a young man who had lived in our area who was a C6 that Ryan spoke with a couple of times. He really respected him and became motivated after his visits with him. Unfortunately, he has moved to better weather, so he doesn't have the opportunity to get together with him anymore--nor does he have any contact information. I have been given the names and numbers of several guys in our area who are injured that are willing to talk to Ryan, but he doesn't show any interest. Would it be wrong of me to call one of them and just have them come over? I really feel that he would benefit from talking with someone who has been through many of the same things he has been through, and how they cope.

Thank you Crash. I may take you up on that!!

[mttb14]

Hi Ryansmom,

As you have found this forum, have you shown it to Ryan?

Since February this year when I found the web site whilst trying to find out information on being an incomplete SCI, John and I visit the site almost daily. We have learnt so much, it has helped us to laugh, shout and scream, realise there are people who are better and worse off than us, and we have also taken strength from it.

Maybe, if he read some of the posts, they would evoke a response from him, whether good or bad.

He may also discover how most people have overcome obstacles and fears, most people here learn from asking questions, and reading the many replies.

What interests did he have before, and are they hobbies he could still have, even if it meant performing them in a different way.

John thought that since his accident he would never be able to do a parachute jump ever again. Someone on this site mentioned Back-up which runs out door events for disabled people. I found them on the internet, joined John as a member and hopefully, he will be abled to do a sponsored tandum skydive this summer. He cannot believe it, he has also always wanted to learn to scuba dive, and on recent holidays he was turned down as the companies insurance would not cover him, but Back-up also do that as an event.

John has also kept on going sea fishing, he just goes to different places which are more accessable and has learnt to change his position for casting, he is also now the chairman of Corus Sea Angling Club. They meet once a month, and if he is in too much pain to go fishing, he still has the company of other fishermen and can talk fishing. Prior to his accident he never would have had the confidence to stand up and chair a meeting, but he does it now.

Challanges are there for you to overcome them, if he sets himself small challenges and goals, and overcomes them, he will want to meet the next challenge head on.

Perhaps you should go out more and leave him to his own devices. I know its hard, but if he needs something doing, let him try to do it for himself, if he really can't then do it for him, but if you are there constantly running around for him, he won't learn to be independant. Think about when he was a baby, he had to learn to walk then, and you had to watch him fall over on his bum, but I bet he always got back up and tried again, well this is similar, let him ask for help when he really needs it, but don't just automatically do everything as he will feel useless and unable. He really needs to see what he can do for himself.

Hope this helps,

Maria

[Para-pal]

I'm really Sorry if i said anything that ruined your day.now I'm sad. i was just trying to express that my friend has been putting on his happy face for everyone else for the past year and he has been depressed lately and i was just letting him know that it was OKAY to be upset for a minute and let out some tears and the fact that he does get upset sometimes. I agree that it is best to be laid back like you are and I thank God that he is because he really doesnt let anything get to him and he is always smiling and positive and for that he is my hero...

Apparelyzed, on Jun 15 2006, 08:40 PM, said:

Well Para-Pal,

I was having a good day untill I read your post!

For the last fifteen years, I've always put a smile on my face, a British stiff upper lip and all that ****! In fact, my wife has only seen me cry 3 times in 15 years, once in hospital (it was a bad day!), once at my Mothers funeral, and once when my daughter was born.

The facts are that it has been hard though, even if I don't show it.

But I agree, it does suck, you lose your privacy, your independance, and your life.

People may read this and think what I'm saying is harsh, extreme and pityfull, but the fact remains that most of the people who suffered a spinal cord injury 100 years ago died. It is not by the grace of God that we survive today, but by medical science.

We have be rehabilatated to live our lives in the best way we can under present circumstances, and over time we become desensitised and conditioned to accepting our lives as being disabled. Of course everyone in society says we have rights just like AB's, but we all know that rule is uneven depending on postcode/zip code.

Sometimes it is best to be laid back (my preference!), and not let any insignificant inconvienience wind you up.

Sometimes it's good to be bitter and not to be content with our lives, at it gives us motivation to change ourselves, and others, for the better. Maybe he is feeling denile, sorrow, greivance, it's just that maybe he needs an outlet, he needs to let rip, blow a fuse, and sport is a great way to do this, or just put his fave' music on his headphones and let rip!

Ok, this reply is getting lost, and I'm losing the plot here.

If Ryan is a T5, he should be independant, be able to look after himself by now, do pressure lifts, turn himself in bed to prevent pressure sores etc. If he can't, what would he do if you weren't there.

Once he has learned to become independant, he will be reluctant to become dependant on a carer again, and the independance will be a great boost to his self esteme.

What I'm trying to say here is that he will find something to help him come to terms with what he's going through in his own time, it's just finding it that's the problem.

Maybe he should be gratefull he's alive ...
Maybe he should look forward to the fact he survived and can start a family, new life ...
Maybe he should start a new leaf, travel the world ...
Maybe he should just enjoy a blue sky, and the stars at night.

We all have something which gives us solace, he just needs to find it.

I'm done.

Simon.

p.s. it's late, does any of this make any sense?

[mttb14]

Hi,

I think the biggest point made here, is that most people, AB or disabled, know that to survive and to get on in this world, means that there are times when you have to hide behind a smile or laugh, when deep down inside you are screaming or crying, and wishing to be in the position you were before your injury, and able to do all of the things you could before the injury.

It is usually the little things which are easily changeable that we all moan about on a day to day basis, it is the painful, scary, deep things that we hide, usually because they are usually life changing. If you break your leg you are allowed to put your foot up for 2 to 3 months till it heals, you know its going to get better, so you are allowed to moan for that short while and totally feel sorry for yourself, how can you do the same with a life changing injury like SCI, you would never have a life and you would never get off the settee.

This does not only relate to SCI. It is also depression, divorce, injury, etc etc. It is human nature, plus we all know that when someone asks if you are ok, they usually mean hello. Nobody wants to hear you complaining and moaning day in day out, so it becomes easier to hide behind a smile, it enables you to continue living. If someone dies, there is an accepted time of mourning, but no one can really give a time for mourning, in todays society when everything is done with such speed, we overlook feelings and emotions in our speed rush, years ago mourning lasted 12 months. Can you imagine how other people would react in this day and age if you walked around in black, looking miserable for a whole year!

Using things found on this site and many others I produced a full list of how John feels on a day to day basis which I have attached, I have printed it and sent it off to DLA and solicitors, etc. I find in our life that dealing with things day to day is fine, it is usually the non understanding of people who in our opinion should know better, which make us mad, infuriate and make us want to cry, GP's and Doctors with differing opinions, very few of whom really seem to understand SCI especially an incomplete injury. Doctors seem to prefer injuries or illnesses which fit into a certain pattern and have exactly the same symptoms for everybody, SCI doesn't. It takes lots of research and learning to understand, and it can be extremely hard to live with.

Anyway, I have gone round the houses a bit, and just wanted to say that everyone deals with things in their own way, and it is usually the AB people who love the injured person so much, that we try to smother them out of love, we need to step back and give the person some independance and to let them find out exactly what they are capable of, usually they are surprised by how much they can do.

Hope this makes sense.

Maria  chronic_pain_details_16th_May__2006..doc (62.5K)
Number of downloads: 116

[HiltonP]

I ask again . . .

Where are his peers?
school buddies?
college mates?
neighbourhood friends?
sports teammates?

[Apparelyzed]

HiltonP, on Jun 17 2006, 04:56 PM, said:

I ask again . . .

Where are his peers?
school buddies?
college mates?
neighbourhood friends?
sports teammates?

It's unfortunate, but mention the word wheelchair, and most of them flee with horror!

It's unfortunate, and a waste of a friendship really, as the main reason for friends not keeping in touch is "I don't know what to say to someone in a wheelchair".

All they can see is the wheelchair, the can't imagine that you are still the same person you were before you were in a chair.

I was talking to someone the other week at a party, and he said, "you are the first person I've ever spoken to who's in a wheelchair". It made his day!

It's a barrier I know, but the fact is, we usually have to break the ice, it shouldn't be that way, it just is.

Get him to ring a few of the guys he used to hang out with, it may be hard work, but after a few meetings, it'll be easy.

After a while, his friends wont see the chair either.

Simon.

[lune14]

Maria,

That was so beautifully put and you really hit the nail on the head.

[John Anderson]

I think sometimes it just makes it easier for one to hang out with friends and do the things that they love together. That's how I kind of got rid of this road bump. Other thing would be good, I think, is to talk to people who knows what he's going through and roughly the same age so it's easier to talk about things, but again, that's just me. Always good to give it a try.

John

[bubbleandsqueak]

ryansmom, on Jun 15 2006, 12:27 PM, said:

He did really good when he was there, but as soon as we got back, he seemed to slip backwards.

the one thing that poped out to me is when you said that he was happy at rehab and then he came home and was not happy. i know geting back into rehab can be a B***h becuse Insurance they say well you don't need it any more so where not going to pay for it. and rehab can be vary costy. but maybe you could at lest bring him back just to lisit if you thank that would help. i don't know if this would help any or not but i hope it dose.

[John Anderson]

bubbleandsqueak, on Jun 19 2006, 12:53 AM, said:

ryansmom, on Jun 15 2006, 12:27 PM, said:

He did really good when he was there, but as soon as we got back, he seemed to slip backwards.

the one thing that poped out to me is when you said that he was happy at rehab and then he came home and was not happy. i know geting back into rehab can be a B***h becuse Insurance they say well you don't need it any more so where not going to pay for it. and rehab can be vary costy. but maybe you could at lest bring him back just to lisit if you thank that would help. i don't know if this would help any or not but i hope it dose.

Yea agree with Chris there, I remember my dad was so pissed about insurance junk, so maybe you want to try that, never hurts.

[LadyPilot]

Joed, on Jun 14 2006, 11:48 PM, said:

Hi ryansmom....

I'm sensing that your son would be very resistive to even considering becoming more socially active right now. For him, so much is the unknown...and he's not even sure where or how he might fit in again. Scary stuff, especially for someone so young.

This brings back some uncomfortable memories. I was 21 when I broke my neck. I was in total denial of being "disabled". While I was still in hospital I was allowed days out with my boyfriend. I didn't want anyone to see me in the W/chair so I refused point blank to get out of the car.
My lack of acceptance was so bad that I had to be forced on a "shopping trip" with the ward sister and my physio. I hated every second of it.
I married my boyfriend a week after leaving hospital (he was after my compensation!!!)and he was my full time carer. He indulged my fantasy , that I would get up and walk soon. If we went out for meals we would park right outside the restaurant. He would carry me in so no-one would see that I used a W/chair.

Two years after my accident I won my claim for compensation and my husband (EX) stated that he'd the right to my compensation and he was now going to have fun without me.

I was left for long hours by myself and I soon learnt to look after myself. I developed a monumental temper against myself and I gradually got full independance. I divorced my husband after 5 years. Then I set about ridding myself of the great chips I had on my shoulders.

With the help of SCI Charity Back-UP, I went ski-ing, canoeing, and abseiling. Getting a taste for sport I also learned how to sail.
Other achievements: passed my Advanced driving test ( the BSM have modified cars for disabled drivers, I already had my licence), Carriage driving (look after my own pony) Glider pilot(Silver C) , PPL holder.

It took me a long time to accept that I have to use a W/chair to get about (beats bumming along on the floor). To me the W/chair is a form of transport nothing else.

I have a great friends and they see me not my W/chair.

This site should be an Inspiration for him
So I guess I'm saying to Ryansmom, leave him alone to get his independance. A case of cruel to be kind?He should have good use of his hands and upper body strength to be able to do everything (except change light bulbs) needed for self care.
I wish him all the best and hope he takes life by the horns BECAUSE HE CAN.

[HiltonP]

I just feel that Ryan must have had friends (no answer to that as yet?). Those friendships need not vapourise because of the disability. Sure, some may be turned off, but not all. I went into a wheelchair at the age of 14 and while I lost some friends I made other new ones. In the long run I probably made a net gain in numbers of friends! Of course if one is shunning people, and hibernating, then one is unlikely to make friends, and certainly likely to loose the ones you had.

I just don't believe it is a good idea to "force feed" Ryan with other disabled youngsters purely on the basis that "they're in a chair, you're in a chair, therefore you will get on". I've been permanently in a wheelchair now for 32 years, and during that time I have had only 1 friend who has also been in a wheelchair (and he's since died). I have plenty of acquaintences who are in chairs, but my real friends, the people I trust, confide in, eat out with, share hobbies and sport with, go on holiday with, all happen to be able-bodied. My disability (and their ability) is not what binds us. Friendship has its foundation in the mind, not the body.

[milosh]

hiltonp... very good point made!

i also don't have disabled friends. nationality, disabled or not, race, religion, gender are not factors i consider when it comes to friendship.

[ryansmom]

When Ryan first came home from Rehab, he was going out guite a bit and his friends were over alot. It has just been within the last 5 or 6 months that he has been "home bound." He has had alot of skin breakdown and just hasn't been feeling good enough to get out. He is a very handsome guy, so he doesn't have a problem getting girls attention. I guess the real problem seems to be regaining good health and energy to get back out there.