18 replies to this topic

[stecurtis331]

hi we have 3 children,12,10,8

our oldest girl tries to understand whats going on and i talk to her and try and make her understand
our son whos 10 is bottling it all up and its taking its toll on his behaviour.
He's finally opened up tonite that he's angry,upset and everyother emotion that a child can feel(absolutely heart breaking to see).He sat and sobbed and saying what he misses doing with me,ive told him im still the same dad,we just have to do different things together.
our youngest girl has a completely different attitude like this is the way its gonna be and thats that,she has always been very forward (haha),we cant knock her for it either.

has anyone got any advice on how to deal with this we would be most grateful.

stephen&anne-marie

[nomis]

It sounds like your son has found his own solution. He's not bottling things up anymore, he's expressing his feelings. Accept and listen to what he says. Share with him. He's probably being more emotionally honest about his feelings over the injuries than the rest of the family.

...and lots of love all round.

[stecurtis331]

 nomis, on May 5 2008, 01:11 AM, said:

It sounds like your son has found his own solution. He's not bottling things up anymore, he's expressing his feelings. Accept and listen to what he says. Share with him. He's probably being more emotionally honest about his feelings over the injuries than the rest of the family.

...and lots of love all round.

thank you nomis
like we said it is hard for the children as they have seen me been able to mess about playing with them and all of a minute that has been take away from them it has been hard on all of the my kids but the oldest girl acts older than she is so it got to her as soon as she was told that i will not be getting any better and like u said hopefully this is the start of where he is going to open upto us more and hopefully we can work with him to start to accept that its not going to get any better but im still the dad i was before this happened and now we know that he can let himself cry in front of us it will help him and his behaviour will go back to the way he was before all this happened like i said thank you very much for your kind words

stephen & anne-marie

[stecurtis331]

 stecurtis331, on May 5 2008, 12:12 PM, said:

 nomis, on May 5 2008, 01:11 AM, said:

It sounds like your son has found his own solution. He's not bottling things up anymore, he's expressing his feelings. Accept and listen to what he says. Share with him. He's probably being more emotionally honest about his feelings over the injuries than the rest of the family.

...and lots of love all round.

thank you nomis
like we said it is hard for the children as they have seen me been able to mess about playing with them and all of a minute that has been take away from them it has been hard on all of the my kids but the oldest girl acts older than she is so it got to her as soon as she was told that i will not be getting any better and like u said hopefully this is the start of where he is going to open upto us more and hopefully we can work with him to start to accept that its not going to get any better but im still the dad i was before this happened and now we know that he can let himself cry in front of us it will help him and his behaviour will go back to the way he was before all this happened like i said thank you very much for your kind words

stephen & anne-marie

had a word with our gp and she is going to try and get our son some councilling he wont open up and talk apart from last week.
but he knows where we are if he wants to talk.

[russ1]

Mt daughter was 10 and my son 7 at the time of my accident, they were both incredibly brave at the time of my accident and when we told them that was it. My daughter was very upset very early on but got through it and accepted it pretty well considering. It completely knocked my sons confidence though and it's taken most of the last 5 years for him to get it back.

It really does knock them for six when their dad is unable to be the superhero (don't all young kids think their dad is a superhero) he was before. In the longer term get them involved and get involved with them, one of the best things I did with my Daughter was to start waterskiing, we now go together and how many girls at her school can say they go waterskiing with their Dad :-) My lad and I do wheelchair skills together, he seems to think that's pretty cool and does far better wheelies than I can. I hope that you get things sorted with your son and that the behaviour doesn't deteriorate further - really though IME time is the best healer.

[stecurtis331]

 russ1, on May 13 2008, 10:40 PM, said:

Mt daughter was 10 and my son 7 at the time of my accident, they were both incredibly brave at the time of my accident and when we told them that was it. My daughter was very upset very early on but got through it and accepted it pretty well considering. It completely knocked my sons confidence though and it's taken most of the last 5 years for him to get it back.

It really does knock them for six when their dad is unable to be the superhero (don't all young kids think their dad is a superhero) he was before. In the longer term get them involved and get involved with them, one of the best things I did with my Daughter was to start waterskiing, we now go together and how many girls at her school can say they go waterskiing with their Dad :-) My lad and I do wheelchair skills together, he seems to think that's pretty cool and does far better wheelies than I can. I hope that you get things sorted with your son and that the behaviour doesn't deteriorate further - really though IME time is the best healer.

THANKS FOR THE MESSAGE
me and my son have start to go fresh water fising and he loves it we go on a saturday and it is brillant to see a smile on his face when we are doing it together as this as giving something to do as we cant do football and other things that we did.
my 2 girls go to kick boxing once aweek and that gets them away from the house and to see they life can still go on and im still they dad i was before this happened like i said thank you for the ideas what we could do together

[kimgilaby]

Hi my daughters are 7 and 4 and my husband is 7 months post injury. My husband and I both agreed that the best approach to take with the kids was to keep them involved in everything (as long as its appropriate) it has given them a better understanding of the changes we have had in our lives. If you go to PT and OT maybe your son would like to go along with you. Then he can ask questions and maybe that will help him communicate better with you. When we go along with my husband his therepists let the kids help with the exercises and they get to meet other people in wheelchairs so they know their dad is not the only one.

I hope that helps a little and I wish you all the best.

[stecurtis331]

 kimgilaby, on May 17 2008, 04:26 PM, said:

Hi my daughters are 7 and 4 and my husband is 7 months post injury. My husband and I both agreed that the best approach to take with the kids was to keep them involved in everything (as long as its appropriate) it has given them a better understanding of the changes we have had in our lives. If you go to PT and OT maybe your son would like to go along with you. Then he can ask questions and maybe that will help him communicate better with you. When we go along with my husband his therepists let the kids help with the exercises and they get to meet other people in wheelchairs so they know their dad is not the only one.

I hope that helps a little and I wish you all the best.

thank u from the idea i did think that u will be able to do that all i can do is ask them when i go and see what they say but the way u put it i think it will do all my children good to go and see and understand that im not the only dad in a wheel chair so thank u very much.

stephen

[Mike (c4-5) & Lorena]

My kids are both 4yo. I was disabled already when they were born. But they still asl\]k a lot of questions. "Daddy, why don't you walk?"... etc

I am not sure my experiance is similar or not. I just ansewer every question I can as openly and honestly as they need to know. I think your kids are scarred it might get worse for byou. I just try to be as much as a father I can, who just can not do certain things. I do sometimes worry that in the future my kids will wish they had a different father. But at sometime, when we were mad at our parents, did we all wish our parents were the parents from some other kid?

I belive your children might be very confussed and don't even know or understand the questions they ask. Perhaps a counciler is needed but be open with them. Answer and anser and answer their questions for their age level. Also, ask them what they think the answer is. See where their thoughts are taking them.

One last thought; Try taking them with you if you go to meet other disabled people. Perhaps meeting other families with a disabled parent will show that they are not alone and that you will be Ok too.

[Zammo]

My daughter is 4 yo at the moment. She kind of accepts that I can't walk because I have 'poorly legs'.

She did ask they other day "Daddy, why do you have poorly legs?". I was a bit surprised by her question, and unprepared and I just fobbed her off with "Daddy just does". She was then distracted by something else so I didn't the usual "Why?" that follows most answers. I wasn't sure what to say to her. I don't want to lie, but at the same time I can't sit down with her and tell her about T6 injuries.

She still thinks I'm great at the moment though. Just been on holiday with some friends. On the second day I went for a swim in the pool. Whilst swimming over to me my daughter remarked to my friend "My Daddy is the best". He said it choked him up. It made my day.

[tinamarie]

Hi stephen & anne marie,

I'm also dealing with kids who are struggling to adjust to my SCI. It's not easy and I sympathize with you and your whole family.

If there are any specific things that your son misses doing, perhaps, if applicable, you could assure him that you will try to find a way for him to continue doing them, perhaps with someone else helping him, but with you as present as possible to participate in whatever way you can or at least to cheer him on.

Just a thought,

tinamarie

[Courtney]

My husband is 4 months post SCI and thankfully our children (6year old boy and 3 year old girl) have both adjusted really well. Our main thing is that we were both completely honest with them. Children understand much more than most adults realize. We explained everything to them just like we would an adult. We also told them that it was ok to be upset and sad about their daddy being in a wheelchair. It's also ok for them to express to us those feelings. They are also both very involved in seeing what their dad goes through, they know all about his equipment, his therapy and all of his adaptive devices that he uses. They know that he is still the same dad.......his body just doesn't work like it used to. It's ok for them to have good days and bad days....because even my husband and I have those days too. Just keep them being able to talk to you about it, communication and patience is very key.....good luck!

[frustration]

Quote

My daughter is 4 yo at the moment. She kind of accepts that I can't walk because I have 'poorly legs'.

She did ask they other day "Daddy, why do you have poorly legs?". I was a bit surprised by her question, and unprepared and I just fobbed her off with "Daddy just does". She was then distracted by something else so I didn't the usual "Why?" that follows most answers. I wasn't sure what to say to her. I don't want to lie, but at the same time I can't sit down with her and tell her about T6 injuries.

Why the heck not? Our daughter is 4.5. She was born several years post-injury and has known since she was 3y that her father is paralysed because he broke his neck. She knows the circumstances of his accident and that doctors can't fix spinal cords.

[allis53ca]

...my 10 and 11 y.o. (girls) at time of accident, both adapted and now 5 years post, act as though i've always been in a chair...my son, 15 then, still has issues with me being crippled...and my oldest (girl) pretty much has never dealt with it...they all respond different...you need to support your kids, but let them deal with it in their individual way...they need to mourn..

[raquel]

This is something i constantly think about.

We dont yet have children but its definatly on the cards.

My Man can't speak and thats my biggest worry.
To comunicate with him you need to Lip Read.

My biggest fear is that our children will use that to their advantage to get away with things.
Also, its going to be difficult in their first few years.

Our nephew who is 5 is only just starting to be able to lip read well enough to have a short conversation.

I hope it doesnt take that long with our own children - it would break his heart.

[Apparelyzed]

Hi,

This topic has now been split, and the replies concerning word prediction software can be seen here:

http://www.apparelyz...?showtopic=9951

Regards

Simon
Admin

[Tash]

i am a carer and I have been asking myself this same question. Like with drugs and alcohol and everything else out there we are suppose to talk to our children about. I will talk to my children about this as soon as they are old enough. I will opena dn honest with them and always leave the door open for questions. I will use proper terms for the names of the parts that inquire about. Who knows they may become doctors.

I have a while before I have to really talk to them tho for they are only 11 months and 3 years old.

[frustration]

Quote

I have a while before I have to really talk to them tho for they are only 11 months and 3 years old.

The while could be shorter than you think. It won't be long before every second thing that comes out of your 3-4 year old's mouth is a variation on "but why Mum?"

[stecurtis26]

thank u all for your support that u have giving to me and me family,we are all getting on great we have moved into a bungalow now which has made a freat inprovement in our family life my children have all started new schools and have made new friends that do not go on at them about having a dad in a wheel chair and my children hae been o see a couciler and myself as just been offered 4-6 weeks in rehab in the new year so thank u all for think about us it as been a great help so thank u all once more

the curtis famiy in middlesbrough england