42 replies to this topic

[georgie]

ryansmom, on Jun 19 2006, 01:56 PM, said:

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.

Hi Ryansmom

Have you heard of The Expert Patient? I'm not sure if this will help but basically I booked my hubby on the course which lasts for two hours every week for six weeks and was free. It covers things like pain management, stress management etc in a group with others who have long term issues. This could be anything from depression to asthma. He was not keen on going but was willing to give it a try. During the group discussions, he was asked lots of questions about me and our life. At the time of his injury, our daughter was 4 and had just started school while our son was just 13 months old. The course made him realise that he could not stay in bed all day as he was putting more pressure on me and not spending any time with the children. I do believe the course helped him to turn things around as for the first time since his sci, he began to realise how this affected our family life and not just himself. I used to do everything that I physically could to help my hubby and just pushed my own feelings down inside me as I wanted to help him. I can now see that for us, this did not help.

It will be three years in November since my hubby's sci and I only feel that we have started to accept the changes to our life now. It has been hard to see him struggling with everything but cannot possibly imagine the hurt when it's your own child. Just hang in there. Make sure you look after yourself and take time out to have a breather so you can be emotionally strong for Ryan, when he needs it.


Georgie x

[Avocado Baby]

Hi there,

Just thought I'd add my opinion. You asked if it would be wrong just to invite someone over to speak to your son. I think that may be a good idea. He may not appreicate it at the time, but I think it would be good in the long run. It does me the world of good to speak to people with similar problems, just so I don't feel so alone.

I also think that you should contact some of the people he was friends with before the accident. If any of them were decent friends, they will want to stick by him and would want to help him with what he is going through. Lastly, he needs to know that it is acceptable to feel the way he is feeling. They are perfectly normal emotions as he is grieving for something that he has lost. But he also needs to learn to cope with the way he is now and make the most of it. We all just need some help with this from time to time and there is no shame in it.

Don't give up and I'm sure things will work out for the best in the end.

All the best!

[ryansmom]

georgie, on Jun 19 2006, 04:41 PM, said:

ryansmom, on Jun 19 2006, 01:56 PM, said:

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.

Hi Ryansmom

Have you heard of The Expert Patient? I'm not sure if this will help but basically I booked my hubby on the course which lasts for two hours every week for six weeks and was free. It covers things like pain management, stress management etc in a group with others who have long term issues. This could be anything from depression to asthma. He was not keen on going but was willing to give it a try. During the group discussions, he was asked lots of questions about me and our life. At the time of his injury, our daughter was 4 and had just started school while our son was just 13 months old. The course made him realise that he could not stay in bed all day as he was putting more pressure on me and not spending any time with the children. I do believe the course helped him to turn things around as for the first time since his sci, he began to realise how this affected our family life and not just himself. I used to do everything that I physically could to help my hubby and just pushed my own feelings down inside me as I wanted to help him. I can now see that for us, this did not help.

It will be three years in November since my hubby's sci and I only feel that we have started to accept the changes to our life now. It has been hard to see him struggling with everything but cannot possibly imagine the hurt when it's your own child. Just hang in there. Make sure you look after yourself and take time out to have a breather so you can be emotionally strong for Ryan, when he needs it.


Georgie x

Thanks Georgie! I have not heard of the Expert Patient-is it online? I would be interested in checking into it. I'm glad to hear everything is going well for you. I know how much it can take out of you both physically and mentally!

Connie

[HiltonP]

ryansmom, on Jun 14 2006, 05:17 PM, said:

. . . 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.

ryansmom, on Jun 19 2006, 12:56 PM, said:

. . . He has had alot of skin breakdown and just hasn't been feeling good enough to get out. I guess the real problem seems to be regaining good health and energy to get back out there.

Ryan's Mom, you're moving the goalposts here !! . . .

Your first post indicated that Ryan's challenge was a social one, but your later post indicates that his challenge is a health one. They call for different solutions, so is it the one, or the other, or both?

At the end of the day, whether one is disabled or able-bodied, if one feels sorry for oneself and looks for excuses not to do anything life WILL pass you by without a second glance. Although he may not think it now the best years of his life lie ahead of him, not behind. It all depends what he chooses to make of it.

Edited by HiltonP, 21 June 2006 - 07:43 AM.

[georgie]

Quote

Thanks Georgie! I have not heard of the Expert Patient-is it online? I would be interested in checking into it. I'm glad to hear everything is going well for you. I know how much it can take out of you both physically and mentally!

Connie

Hi Connie

The Expert Patient is something that my doctor told me about. Hope the link works.

http://www.expertpatients.nhs.uk/

You should be able to locate the course dates in your area and register your interest. You may have to wait until they have sufficient numbers though.

Good luck.


Georgie x

[milosh]

well... he should do it stepp-by-step. great people around him are very important.

[4estGimp]

Let me apologize now for my bluntness and lack of tact.

ryansmom, on Jun 14 2006, 12:17 PM, said:

My son is 22 years old and is a T5 para.

22 Years old and lucky to have full use of his arms.

ryansmom, on Jun 14 2006, 12:17 PM, said:

He goes through hell everyday

That's his fault. He has no "Hell" to endure everyday.

ryansmom, on Jun 14 2006, 12:17 PM, said:

Sure I take care of his wounds and clean him up

WTF??? Take care of his wounds? He should not have any wounds. "Clean him up".. omg I hope you are not in charge of his hygiene. Please don't coddle him.

ryansmom, on Jun 14 2006, 12:17 PM, said:

If I try to push him--he gets mad. If I don't do anything, he thinks I don't care.

Tough! He is a 22 year old male. He needs to act like one.

ryansmom, on Jun 14 2006, 12:17 PM, said:

He does not leave our home and lives much like a hermit.

Kick him out. Problem solved. Tell him in 'X' months he will be in his own apartment and better start learning to take care of himself now.

When I was in rehab, I was surrounded by head injuries and those who had suffered severe stroke. There were also a couple quads and a few patients that suffered paralysis from some sort of disease. I was young, had my arms and had my mind. Reality was in my face daily, reminding me just how lucky I really was. You son seems devoid of this reality.

[4estGimp]

Apparelyzed, on Jun 17 2006, 02:02 PM, said:

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.

I never had this as an issue. I was released from rehab on a Thursday and was back in shool on the next Monday. My peers groups did not change post injury.

It was 20 years before knew anyone else in a wheelchair on a social basis.

Now dating.... well... that is another story.

[DaveP]

Ryan's Mom - maybe you need to be a bit tougher on Ryan. Mother's can be over-protective of their children, especially after becoming disabled, and the more you mother/baby him, the less independent he will become - or more correctly, the more dependent on you he will become.

If Ryan can't drive, get kick his arse and get him to find out where he can get his driving licence, and make him do all the work, all the phone calls, etc.

There's loads of sports he can do - wheelchair basketball, handcycling, water skiing, snow skiing, quad biking, karting, etc. Here he'll meet people of his age and level of ability, which is the peer pressure he might need.

He should look after his own skin and other issues, not you, but the more you do for him, the less he will need to do for himself.

Get tough Mom!

[tracy's mom]

ryan's mom, I can understand you fully! My daughter tracy was in a car accident about 2 years ago , She wasn't wearing a seat belt and was thrown out the driver side window. her spine was broken in two and her spinal cord was damaged she is a T6/7 injury and has herrington rods holding her spine together! she was 19 at the time. she is now 21. she goes out with friends on accasion but not often, she told me she doesn't want to be a burden to anyone! I try my best to get her motivated but it is a daily fight ! i finally got her to enroll in college , she starts in january! I just want you to know you are not alone! I know my daughter hates her chair, she fights depression on a daily bases , i have no clue of what she goes through but all we can do is keep pushing to keep them going!! They are so much more than A WHEELCHAIR!!!!!! She still is angry and i pray in time she sees her worth!! I am just so thankful she is still here!!! tracy's mom

[Princess V]

HI RYAN'S MOM

I JUST WANTED TO FIND OUT HOW ARE THINGS NOW WITH RYAN? I READ YOUR POST AND COULD REALLY IDENTIFY WITH YOUR CONCERNS. MY BROTHER IS 21 AND ALSO A PARAPLEGIC.
HE HAS BEEN BEDRIDDEN FOR 7MONTHS DUE TO SEVER BEDSORES AND INFECTIONS.
I LOVE HIM SO DEARLY BUT DON'T KNOW HOW TO HELP. SINCE THE ACIDENT A YEAR AGO HE HAS BEEN EXTREMELY DEPRESSED AND DOES NOT WANT TO GO ON. DID YOU FIND A SOLUTION TO HELP RYAN?

[Mike (c4-5) & Lorena]

ryansmom, on Jun 14 2006, 12:17 PM, said:

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."

My hubby ended up meeting a disabled guy like himself. When he saw all of the things the other Quad was doing, he got interested. A home, collage, wife, kids, driving, etc. Sure it takes time to let go of the past and move forward. Getting to his goals takes time too. As a parent, you are correct, you loose either way you go. Treat him like you would otherwise. Help him when he needs it, let him struggle when he should. Parents have it the worst. You can never devourse him.

My your saying "He goes through hell everyday" sheilds him. Treat him as you would any child. Being paralyzed is tuff but a lot of people live great lives with even more paralsis then him. Who cares if he can't identify himself. Mike and I never make a deal or talk about bit. He will idetify himself as he goes. Tuff love also. Tell him ok. Let him be a hermit. He will half to go up one day. His paralysis wont be going away. Go on with your life but let him see you too need to move on. Ask him if he wants to go shopping, don't be disapointed if he dosen't go. You go. Ask him to do other things. Cook his favorite meal like it is nothing.

The hardest thing is for any mom to let go. Not that you will ever stop worring. He needs space, heneeds to meet others in his same situation. He needs your love. It is so hard for you the mother.

A lot of indepentdant living centers have groups to help family members coup. Hearing other stories can help.

One last thing, let him here you cry. Not infront of him. Letting him no indirectly that you are hurting is only fair. He might feel that we here don't know how he feels, but he has no idea what you/parents go through either.

God bless and take care

[YYZ]

It may be necessary to get him on an anti-depressant. Sometimes depression gets so chronic that it takes medication to get out of the abyss. Not that he should take medication forever, mind you.

It may be difficult to get him into a group of individuals in wheelchairs because in looking at them, he sees himself, and maybe doesn't want to face that right now.

Everybody adjusts in their own way, and he is still relatively new this the whole SCI thing. Definitely get him more socially active. Even if it means them coming to him. Try not to make it obvious what you are doing, as he may get turned off at the thought of you suggesting that there is a problem.

YYZ