9 replies to this topic

[The Wife]

Hello,

I'm new to the forum, but am looking for help an ideas on ways for my daughter and husband, a quad of nearly eight months, to bond.

Before his stroke, my husband and daughter were extremely close, as he was her main caregiver, but now they have little to talk about and rarely speak or interact unless my mother or I prompt it.

A big part of the problem right now is that, K, my daughter, is still very shaken up over everything that's happened, and was discouraged from even being in the same room with Chris by one of our former nurses (We've had quite the line-up.).

Currently, she sleeps with her grandparents, my parents, a few miles down the road and comes over after breakfast (and morning chores) and stays till after dinner. This keeps her from dealing with a good portion of the medical issues we're facing and allows Chris some time to vent and be grouchy without fear of upsetting or scaring, K.

K was also witness to a very bad accident a few months after Chris came home. His injuries were severe enough that he had to be hospitalized again, and K was very traumatized both by seeing the EMT's and Firefighters, again, this time coming into our home.

Chris feels horrible, both about his new limitations and the trauma that K has been through. He harbors a lot of guilt over the car accident that his stroke caused and how badly that has affected K.

They are both in therapy right now, but the only suggestion the therapist has is watching TV, and that has kind of been wore out.

We've tried boardgames as well, but there are very few that don't turn into Mommy and Daddy against K, since Chris needs help, and K doesn't like that at all.

[goose]

Why not let her and your husband be partners [in the games] against you or someone else. When they have to join forces, this will create a special bond between them. She can feel like his little helper in a fun way. They could make up stories together. One start it and the other one finish it. She just needs to know that her daddy is going to be okay and to keep the line of communication open.

He's still very new to this and feels his manhood has been stripped away. It's hard on everyone but when the anger leaks out it will get better.

Just thought of something else..could see help her dad by doing finger exercises or some thing where she thinks she's helping him get better. I remember Chris Reeves son doing PT on his legs. Try to include her with as much as possible.

[wheeliebear75]

When you say "quad".....do you mean; NO hand or arm function whatsoever, he has no use of fingers but he CAN lift his arms a bit, he has the ability to flex his wrists just not able to control his fingers? The reason I ask for this specification is it will help US to come up with ideas of what to do together if we know exactly what his abilities are or aren't. Also you mentioned his accident was caused by a stroke....did the stroke impair his language in any way including if it makes it difficult to verbalize or put into words what he is feeling?

At 6 she can turn the cards over & move his men; HE is deciding where/which to move, & she is still getting daddy daughter time. When my girls were little & their baby brother needed feeding; I'd nurse him & they each (there 3 of them) got to take turns moving my men around & turning my card over for me but I told them which one to move etc., so if my girls were able to play this way with me even younger than your daughter is than I'm pretty sure they'll be able to play without any need for intervention (so long as she moves the men where he said to move them).

Bubble blowing? Let K do the dipping & trade off with the blowing part....K blows a wand full then she dips it again for daddy to blow a wand full.

Movies are nice & there are a ton of them but they're not all that interactive. If he doesn't have arm/hand control (so long as he doesn't have issues with swallowing) make a game of the popcorn...while watching the movie she can sit in daddy's lap & make a game of her tossing a popcorn kernel into his mouth....just vacuum him up later.

If you are in a major city I would suggest that you try to see if they've got any counselors who have experience in working with kids who are dealing with a family member who has a major illness or injury. My sister was given a counselor through Children's Hospital, & they gave referrals for my mom & Aunt to all get someone with some experience working with families dealing with major illness and/or injury. It doesn't just effect THE person who suffered the injury/illness but the family as a whole. It's not always easy for adults to come up with the words to describe exactly what it is that is upsetting & even harder for a child who doesn't understand what is going on. For my sister because she was 6 & I was 14 was used to being "the center of attention" & when I got hurt all of a sudden that center shifted & she through a lot of temper tantrums. Like with your husband & daughter, my sister was often shipped off to my Aunt's or our God Parents' or a neighbor so we had dinner together as a family.

I wish you ALL the best of luck during this bumpy patch of rough road we call Life.

[The Wife]

Thanks for the great suggestions guys.

Chris has no hand or arm function. He can lift his head and neck, occasionally while moving a shoulder will come with it, but the doctors and therapists feel that this is more that his neck and collarbone area are strengthening, not that he is regaining motion in the shoulder itself.

[zia]

I know you have a lot going on and this will sound strange but how about getting some shrimp? My boyfriend has a small fish tank - he's tried keeping several varities of fish but they kept dying. One day one of his PCA's brought him a couple of Ghost Shrimp. So far so good! (it's been 4 months so far). Chuck has limited use of his left hand and virtually no use of his right so he can't feed them. Another one of his PCA's has a young daughter that she sometime brings with her when she comes to work with Chuck. She was immediately drawn to the tank. He asked her to feed them for him and she did. She was shy around him at first - the power chair, lack of mobility - it can be overwhelming for sure. But this kind of broke the ice for them. Now she asks if she can feed them every time she comes over. He will wheel over next to her and they will 'find' the shrimp. They have played Uno and she will help him with his cards. It's just a thought.

Also - my niece is 12 - but I do remember that at 6 she was fascinated with make up and nail polish. Perhaps she could give daddy a makeover? My sister has wonderful pictures of my BIL after he was made 'pretty'. LOL! If your husband has the tolerance for it maybe that could be a fun afternoon?

I don't have kids but I know they like to laugh and giggle and have fun. Watch some funny movies - cartoons if it's OK. Tom and Jerry, Woody Woodpecker, the Road Runner and Wyle E. Coyote (I think I may be dating myself).

I enjoy reading your posts - you seem like a strong woman and your husband (and family) are lucky to have you!

Maria

[warped]

I am a quad with a 16 yr boy and 14 yr girl. I had the accident 7 years ago. I know what your hubbys going through its hard to find things to do with the kids without making it a chore for them.

I use a computer and would be happy to talk to you (or anyone) that needs help using a computer in this condition. Once on the computer the skys the limit. Once I am in front of the computer i need no help from anyone else so it is good for independence from walking freaks.

zia, on 28 June 2011 - 01:13 AM, said:

I know you have a lot going on and this will sound strange but how about getting some shrimp? My boyfriend has a small fish tank - he's tried keeping several varities of fish but they kept dying. One day one of his PCA's brought him a couple of Ghost Shrimp. So far so good! (it's been 4 months so far). Chuck has limited use of his left hand and virtually no use of his right so he can't feed them. Another one of his PCA's has a young daughter that she sometime brings with her when she comes to work with Chuck. She was immediately drawn to the tank. He asked her to feed them for him and she did. She was shy around him at first - the power chair, lack of mobility - it can be overwhelming for sure. But this kind of broke the ice for them. Now she asks if she can feed them every time she comes over. He will wheel over next to her and they will 'find' the shrimp. They have played Uno and she will help him with his cards. It's just a thought.

Also - my niece is 12 - but I do remember that at 6 she was fascinated with make up and nail polish. Perhaps she could give daddy a makeover? My sister has wonderful pictures of my BIL after he was made 'pretty'. LOL! If your husband has the tolerance for it maybe that could be a fun afternoon?

I don't have kids but I know they like to laugh and giggle and have fun. Watch some funny movies - cartoons if it's OK. Tom and Jerry, Woody Woodpecker, the Road Runner and Wyle E. Coyote (I think I may be dating myself).

I enjoy reading your posts - you seem like a strong woman and your husband (and family) are lucky to have you!

Maria

[snowqueeneh]

Does he use a powerchair?

[coffeecups]

I have 3 kids, 6, 3 and 1. For several months I did not have any arm movement. Some things we did:
*Read books. They would sit on my lap and turn the pages. We can spend a ton of time reading.
*They loved to sit on my lap when we went for a 'walk' through the neighborhood. They still love this.
*When I had a sip-n-puff we would play tag. They thought it was hysterical and I got a lot better at driving.
*Sit outside and watch them play. They just liked me being out in the yard with them. Watching them play with sidewalk chalk was fun. I would talk about anything they drew. Often we would make up elaborate stories. Or they are often happy knowing I am watching them on the playground, ride their bike, jump rope...
*Go out to eat or go to a coffeehouse. I didn't have them feed me, but they could help me with a drink. We would often order a drink that we could share.
*Go to the zoo/aquarium/museum. The kids always rode on my lap.
*Go grocery shopping. We spilt the list with my husband. The kids come with me and get everything and put it in the cart. When there are items the kids can't reach, someone has always been glad to help. It takes forever but it is a ton of fun.
*Go shopping online. It wouldn't matter who ran the mouse. My kids love to look through amazon, etsy, any site. We don't often buy but it's fun to 'window shop'.
*Research something together, use books or online sources. For example my daughter wants to plant an herb garden. So we are researching herbs. Your daughter can be the secretary and record the information. Next my daughter wants to learn about whales. So were about to do a whale unit.
*Letting my daughter do my nails and makeup. I know my daughter would love to paint her dad's toes.
*I don't know what computer set up you have, but using voice controls (like Dragon or Windows 7) or even a mouth stick mouse, they could play games on the computer. That way no one would have to assist him.

There are many things for them ton do. I hope they can find something fun to do together.

My kids also had some trauma with my injury. I was unconscious for an hour and they were alone with me. (I had a spinal stroke and not an accident.) So lots of anxiety. It's not easy trying to find the best way to deal with them. We've found that we just need to listen to them. For example, we thought she would be scared to watch me being suctioned. So we always left when I needed to be suctioned. Soon she started sobbing, just tell me truth. So we did. She was fine. For them we are just open as much as possible. But that is what my kids need. I am glad that you are finding what works best for your daughter. I hope she continues to heal and bond again with your husband.

[snowqueeneh]

Assuming he uses a powerchair. We have two boys 6 & 8. We will spend the entire day hiking and fishing on accessible trails. My husband ties a wagon behind his chair. Sometimes we load it up with a cooler, fishing rods, and all kinds of stuff. The boys love to ride in the wagon. They also love to stand on his back tires while holding onto the bars, sort of like a wheelchair piggy back lol. He also runs over stuff, like a gummy bear or a stuffed toy.

[rue2you]

This is just my opinion so please take it as that and you can throw it out if you like! I have 6 children ages 2-12 and I was 5 months pregnant with the last one when I became paralyzed. So, I understand the trauma of how it affects the children and I also understand the feeling of guilt that they have to see you go through stuff and suffer. I was in and out of hospitals, doctor's appointments, specialists...etc. and had so many complications. I could see the fear that would fill their little faces if I just went to the store. They weren't sure if I would come home or anything. We took a break from a lot of other things and just focused on them. They needed the assurance that I was going to be okay - even if I was in a wheelchair - than to be protected from everything.

Sometimes, I think we think that children are very fragile (and they are to a degree) but there greatest security is in their mommy and daddy. They just want to know that everything can be okay. I think children think less about a physical disability than we do. They have such unprejudiced little hearts and they just love everyone - no matter what. Your daughter is still so very young that her greatest need is security.

My advice? I would bring her back home! She needs to know that Daddy's routine (good and bad) is part of his new life. She can be his special little helper. You could buy or make her a little nurses costume and let her rub his head and kiss his boo-boo's. Making his new life a part of her new life also is very important. When my family is feeling sad we make ourselves play "Pollyanna's Glad Game". We thank of all the things to be thankful for - that we are a family, that I am alive, that people are watching our family and it encourages them, that we haven't divorced and the children have to go to different houses all the time, that the sky is blue, that the rain is watering our flowers and ANYTHING we can think of to get our minds where they need to be. As long as she is with her daddy and around him, I think that will help her in the long run. She can color, sing karaoke, dance for Daddy, play dress-up and house or anything else that little 6 yr. old girls do - just let it be near him and around him. Then she will feel that he is part of her day whether he really is "involved" or not.

My kids are crazy, a lot of fun and have adjusted very well. I am over 2 years into this thing and I am so thankful for the love and support of my hubby and kids.