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Thread: Children and care issues

  1. #1
    Senior Member Jeff B's Avatar
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    Children and care issues

    For those who have young children and are dependant on others for care how does it work for you? More specifically:



    For those who have non family hired attendants, what sort of interactions, if any, do they have with your children? I assume that if someone is in your house for several hours each day that some interaction is taking place and I am curious of the dynamics of this.



    If your significant other performs some or all of your care then where are the kids (if at a young age requiring supervision) and what are they doing during these times when you are both occupied?



    How do you explain attendant or significant other care to children (I can guess but would still like specifics)?



    How often are you alone looking after your child(or children)? How does this work for those of you who are quadriplegics?



    How do you balance getting occasional help from family if needed (especially yours or your partners parents) without them trying to take over and always be there? (This is a big one. It is hard enough to keep them from always being here to work on the house, or property, or making dinner. We appreciate occasional help but every other visit turns into an all day affair).



    Any other comments or stories would be helpful.



    We don't have any children but if not for my paralysis would eventually have had at least one. I have attendants in the morning for 3-4 hours depending on what is being done (1.5 for wash, dressing and into chair one day and 1.5 misc household tasks one day, 3-4 hours for bowel routine, shower, dressing and into chair the next). My wife helps me get settled into bed at night. A few nights per month she is away for work and an attendant comes to help me. As it is right now there seems to be too much, that is too tiring to add a child but someday maybe if we can sort some of this stuff out.
    Last edited by Jeff B; 07-12-2005 at 05:48 PM.

  2. #2
    For those who have non family hired attendants, what sort of interactions, if any, do they have with your children? I assume that if someone is in your house for several hours each day that some interaction is taking place and I am curious of the dynamics of this.
    -NOT AN ISSUE HERE AS MY HUSBAND IS THE CAREGIVER


    If your significant other performs some or all of your care then where are the kids (if at a young age requiring supervision) and what are they doing during these times when you are both occupied?

    -VIOLET USUALLY USES MY BP TIME (3X A WEEK IN THE EVENING FOR 2 HOURS) TO TRASH THE HOUSE WHILE SHE KNOWS IM OCCUPIED LOL.


    How do you explain attendant or significant other care to children (I can guess but would still like specifics)?
    -I HAVEN'T 'EXPLAINED' ANYTHING YET, AS VIOLET IS JUST 2 AND THINKS ITS NORMAL. SHE HAS ONCE PUT ON GLOVES DURING MY BP AND TRIED TO 'HELP' BUT i JUST TOLD HER NO. SHE WILL TRY TO PUT CATHETERS IN HER BELLY BUTTON LIKE I DO.


    How often are you alone looking after your child(or children)? How does this work for those of you who are quadriplegics?
    I'M RARELY ENTIRRLY ALONE AT HOME WITH VIOLET AS MY HUSBAND IS HOME ALL THE TIME TOO BUT I CHANGE DIAPERS,PREPARE MEALS, DRESS, ENTERTAIN AND EVERYTHING AS WELL AS GO OUT ALONE WITH VIOLET NEARLY EVERYDAY.


    How do you balance getting occasional help from family if needed (especially yours or your partners parents) without them trying to take over and always be there? (This is a big one. It is hard enough to keep them from always being here to work on the house, or property, or making dinner. We appreciate occasional help but every other visit turns into an all day affair).
    LIVE 10 HOURS AWAY LOL. I COULD SEE THIS BEING AN ISSUE IF MY PARENTS LIVED HERE.

  3. #3
    Senior Member Jeff B's Avatar
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    Thanks for your reply Emi.



    When you go out alone with Violet I know that you take your powerchair. Do you also take a wheelchair cab or bus, or are you going to places in wheeling/driving range?



    The family issue would be a big one that scares me away from pursuing parenthood. Unfortunately some occasional family help would be needed but that could just lead to them trying to do everything. This would sort of take away some of the appeal of having a child. When he or she is being half raised by others who don’t respect your rules the result could be a spoiled kid who will not listen to their parents. Especially the SCI’d one who can’t directly enforce rules or correct bad behaviour.

  4. #4
    Quote Originally Posted by Jeff B
    Thanks for your reply Emi.



    When you go out alone with Violet I know that you take your powerchair. Do you also take a wheelchair cab or bus, or are you going to places in wheeling/driving range?



    The family issue would be a big one that scares me away from pursuing parenthood. Unfortunately some occasional family help would be needed but that could just lead to them trying to do everything. This would sort of take away some of the appeal of having a child. When he or she is being half raised by others who don’t respect your rules the result could be a spoiled kid who will not listen to their parents. Especially the SCI’d one who can’t directly enforce rules or correct bad behaviour.
    I take regular public transit with Violet, the busses here have ramps and so does the Subway. When she was under 18 months or so I strapped her to me, and now shes on a 'leash'. We go all over the place, even all day or hours on the bus.
    As far as family interference, I think even AB parents have that issue, its important to be firm and establish that you are the parent, and they will abide by your descisions. Of course you must show your appreciation for their help. You are right that the child must respect their parents. In mydaughters case, I realized it was important that she respect me, so I have never ever, from the time she was old enough to misbehave, let her get away with anything. She now understands that what mommy says, goes. If she doesn't listen she is disciplined, we put her in her pack and play for a time out or if its a dangerous situation we give her a small spanking. I am consistent and determined and have more patience than her - I once sat in the middle of a parking lot with her screaming on the ground for 20 minutes because she wanted to walk instead of standing on my feet or sitting on my lap. I 'won', she climbed on my lap, and she has never insisted on walking through the parking lot again.
    That being said, I don't want to be an overly strict parent, sowe have very few rules that are not related to ensuring her health and safety - I let the small stuff slide.

  5. #5
    Emi gave great advice!

    My mom was my caregiver, child-helper, for the 1st 6 years after I had kids. I'm c6/7 inc with sensation but no function chest down. I managed to care for myself until the 7th month of pregnancy and then I needed help--especially--when my infant arrived. I was ready to let my mom go after 4 years (way too long here---at this point she bascially visited everyday) when *bam*....I got pregnant again. She stayed until my 2nd child was around 18 months and I let her go. It devastated her. I don't know what to say here except that if I had it to do over again, I might have rather a PCA, or some other arrangement. I should have had boundaries way before then. Please don't get me wrong..I love her dearly and very much appreciated her but I needed to care for my kids on my own.
    Family is such a touchy issue. Emi is right, lay down your boundaries early on. Stress the fact that your kids need to learn to trust and obey you for their own safety and that doesn't work well with family over at your home so much. Even ABs have more discipline problems when grandparents are around.
    I use an accessible van so public transportation is not an issue.
    As for personal care, little ones are extremely clingy and oblivious to what's going on. I would just keep the door open and let them wander and play until around 3yrs when you start potty-training them. That's a good time to teach them privacy when they go and you go to the bathroom.
    We were a lot more strict with our 1st child when the grandparents had them...no candy, soda, tv, etc but much more relaxed whith the 2nd. I guess we're just worn out and welcome the break when they are invited over!
    You also learn to adapt. I shopped around for a car seat the I could buckle/unbuckle, made a 'gate' on the baby bed, used a desk for a changing table, etc. Those inspirations come sometimes out of desperate situations!
    I hope all goes well for you. My kids are now 6 and 11 and are very independent and extremely helpful. They are a great joy.
    Shannon
    C6/7 incomplete
    20 yrs post sci

    "falling is easy it's getting back up that becomes the problem, becomes the problem" Staind
    "A synonym is a word you use when you can't spell the word you first thought of.:" :-)
    - Burt Bacharach

  6. #6
    Senior Member taj2002's Avatar
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    Background: My husband is C3-C4 ASIA A QUAD, no movement basically just below the neck. He is off the vent, but still has a trach. We have 2 sons, 9 and 11. They were 6 and 8 at the time of my husband’s injury. My husband requires 24 hour care as he is totally dependant. I do a lot of it, but we have several hired caregivers as I have a part-time job too.

    Our boys are very friendly with the caregivers. The caregivers don’t discipline the kids, but do help my husband interact with them. Last week, the nurse, my husband and our 11 year old went to see a movie while I was at work. The kids are usually at school or camp during the day while I am at work, but last week the older one stayed home to spend time with Dad. The nurses like the kids, and vice versa. I certainly don’t use them as babysitters, but occasionally the kids are here and I am gone. The caregiver’s job is to take care of my husband, and sometimes that includes helping him be a dad. We have had the same group of caregivers for a couple of years so they have almost become a part of the family.

    My boys are a little older now, but they have quickly learned there are times I am unavailable. I usually leave the bedroom door open and they wonder in and out, but during bp I close the door. They know their dad is going to the bathroom, but don’t realize what’s involved. Sometimes they will help a little with some stuff, but mostly I try to juggle the kids and dad; one of the big bummers being an AB spouse and mother.

    If you are talking about bp, I have told them like the other muscles in Dad’s body, the ones that poop don’t work either. They know that their dad uses medication and Mom or the nurses have to help. They also understand that it takes awhile, plus the smell is a give away too. As for the other stuff, they understand trach suctioning because Dad can’t cough, and they know that he has a sp cath and that the urine collects in a bag on his leg. Honesty and truthful explanations have worked for us. They know the basics, but don’t know all the gory details, yet.

    Occasionally my husband stays home alone with the boys; say if I run to McDonalds or such. Due to his total dependence, he really doesn’t stay alone much. As the kids get older, I think that might be more practical as they will only need adult supervision, not so much hands on work.

    Both of us have big families, but we limit the help we ask for. It just didn’t work out for us. My husband’s family has had a hard time accepting his injury and don’t really want to be involved in his care. They will however take the kids places etc. We just set limits, and they know that we are the parents.

    As a wife of a totally dependant quad, it is sometimes very difficult and stressful raising the 2 boys and caring for my husband. There are some days when I think I can’t do it any more, but then the kids say something so funny, give me a hug, you know all the things kids do, and I can get up the next day and keep going. Being the AB spouse, mother, caregiver, part-time worker, janitor, house-keeper, grounds-keeper, etc. is a hard job, but I wouldn’t want to do it without my boys. They keep us both going and give us a reason to keep hoping. Just the other day, my son asked me if he could turn Dad’s room into an office when Dad gets cured. He said, you know, when he gets up and walks again and you two go back to your room upstairs, I call Dad’s old room. Yes, kids keep you looking forward to a brighter future.
    Trish

  7. #7
    Senior Member Jeff B's Avatar
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    Thanks for your replys everyone. I am impressed by your versatility.

    We have a van but I do not drive. I used to use taxis but the service here is terrible. You can't just call a cab and ask for a wheelchair one like in some cities. The wheelchair cabs run off a separate dispatch and must be booked in advance at least several days, so they could not be used in an emergency or short notice. I live in an outskirts of town suburb so no bus service either. Of course my mom never had a car or her license when I was growing up and we survived, despite living way out of town.

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