Support for children...? My kids are having a tough time

Discussion in 'Fibromyalgia Main Forum' started by cathie, Oct 3, 2002.

  1. cathie

    cathie New Member

    Just curious... anyone have any ideas for helping children who have a parent w/ fibro or cfs? I've been in a bad flare for 11 months now. I have an 8 year old who cries alot now, and an 11 yr. old who gets angry.

    I know a while back there was some discussion about a discussion group for kids, but I don't know if it ever materialized.

    Anyone have any suggestions? I don't know what to do.

    [This Message was Edited on 10/03/2002]
  2. cathie

    cathie New Member

    Just curious... anyone have any ideas for helping children who have a parent w/ fibro or cfs? I've been in a bad flare for 11 months now. I have an 8 year old who cries alot now, and an 11 yr. old who gets angry.

    I know a while back there was some discussion about a discussion group for kids, but I don't know if it ever materialized.

    Anyone have any suggestions? I don't know what to do.

    [This Message was Edited on 10/03/2002]
  3. Sheryl

    Sheryl New Member

    I have just been using google to find info on the same subject but found nothing. I am trying to find help for my 15 year old. A discussion group about this fot the kids would be great. My daughter seems to be angrier lately too.Maybe someone has read some good articles they can share with us.
    I understand,
  4. dd

    dd New Member

    Hi Cathie - I am so glad that you brought the subject of children up. I too have been wondering how to help my children deal with this. I have 3 boys, 9,10 and 14. They are my 3 precious angels that give me hope everyday to carry on and try to get better. I have noticed a change in their behavior since I became to ill to do a lot with them. Mainly it is my 14 year old that I am really worried about. When I was first diagnosed I sat all 3 of them down and tried as best I could to explain why Mommy spent a lot of time in bed and why I don't go out of the house as much as I used to. My 14 year old kind of understands but he also has a right to be a normal teenager. I get so frustrated because he feels left out and angry that he can't do a lot of things that his friends are doing. He is always asking me to take him to the movies, the mall, concerts and all the fun things that he should be doing right now in his life. I hate to tell him no because I am sick. That is so unfair to him. I usually call the parent of the child that he wants to go with and ask if they can pick him up. I have had no one say no but he gets embarrassed sometimes because he wants me to be the one to pick friends up and take them to the movies sometimes too. I do let his friends come over and stay the weekends whenever he wants and we rent videos. He says that gets boring. He has gone to concerts, but again, I have to call another parent to provide transportation for him. I feel so bad for him that I just cry sometimes. I try my best to get him to places that he wants to go but I guess he wants his Mom to do these things for him, which I can totally understand. It just breaks my heart for him. When he was younger, before this DD, I was the typical soccer Mom. He was involved in sports and had a very fulfilling life. Now this DD has not only robbed me of my health but it has robbed my kids of a normal childhood. I also think that he does not want his friends to come to our house sometimes because he is embarrassed of his Mom being sick and laying in bed a lot of the time. When he does have company I try my best to look better than normal and try not to stay stuck in the bedroom but I can't always do that because of the pain and fatigue. What is a parent with this DD to do? How do other's out there deal with situations like these?

    My two little ones don't get angry like my older son does but they do want me to take them to Wal-Mart and K-Mart and do fun things. I tell them we can go on the weekend when Daddy is home. I usually end up feeling so lousy that they do go but I stay home. I do venture out sometimes but then end up having to come home and ruin the whole outing for everyone. Before I came down sick I would spend at least 4 days a week at their school volunteering and going on field trips with them. They really miss me not going to the school. I still help their teachers with paperwork and other projects but now I do it from home. It's not the same as having me there for them though.

    One other thing that I want to bring up that I have noticed is that they think it is normal for an adult to be lazy and lay in bed all day. I know that does not sound good but I have heard my 14 year old say that when he gets older he is not going to work but get SSD like his Mom so he can stay home all day. That breaks my heart too. I think to myself, is this what I am teaching my boys? To be lazy and collect SSD? I explained to him why I am getting SSD but kids just can't comprehend a lot of adult issues. I by no means am saying that we are lazy. That is what the kids think though.

    Sorry for rambling but this is an issue that I have thought about for a very long time.


  5. blast

    blast New Member

    I have two kids 3 and 11, both of whom are the best children a parent with a disability could have. They both have type 1 diabetes, so they know what is like to have problems, as does their father, whom also has renal failure and is in and out of the hospital almost bi-weekly.
    I try my hardest to do everything I can, but I too also ask for other parents to help car pool. When I am feeling up to it I offer them the rides and sleepovers and outings.
    I have tried to explain to them that when mommy doesn't feel good she has to rest, but when she feels better she will take them to a movie, chuck e cheese, etc..
    They have become more independant, and my therapist says that children of parents with illnesses become more productive adults and are more apt to become something. So, for the mom of the child who says they want to lay at home all day and collect SSD, I say shrug it off. I think it is just a way of blowing off steam. Make sure he stays involved in school, and after scholl activities i.e. sports, and clubs. He'll come around just don't lose him and keep your chin up. Things always get better.
    My children often help me when I am bed ridden, so have your kids play an active role in your bed time. Read together, watch t.v., do homework in bed, do arts and crafts and don't worry about the mess. YOu can always clean up later!! YOu will be suprised at how much they love being in bed with you and the closeness and bonding you can share. If it weren't for my kids, I wouldn't want to live anymore because of the pain and faigue. It is overwhelming, but my children remind me of what life truly is.
  6. jetmek

    jetmek New Member

    I know what your going through i found out from a friend that my daughter thought i was going to die . I just had to explain that moommys sick but ill be around but i havent found any material for kids yet i just hug both of mine alot and try not to show my pain outrightly around them.hang in there
  7. Thella

    Thella New Member

    I am new so I was reading back mega messages and saw one about a girl whose mother has the dd's.
    It hit close to what mothers go through with young children.
    I bumpted it up and it is "A story about kids and fibro" I think. I know the poster is mom.
    hope this helps you out. It also said that she is working on one for older children. Hope she comes back and posts it if she does do one.
  8. cathie

    cathie New Member

    ...for the encouragement. I've been feeling helpless lately, struggling with anger of my own. I try so hard to be more in acceptance of how things are for me and not fight it... I've worn myself out fighing it! And mostly I do a pretty good job of that. But when I overheard my older son tell one of his friends, " Yeah, she's still sick. I think she's faking it just so she won't have to work." Well, that was tough to handle. And my younger son cries when my husband takes them to church because I'm not there. He's sad that I don't do all the things with them that we did "before". I talk to them and try to explain things to them. I tell them that I didn't choose this, it chose me. That we just have to make the best of the good days. But still, there's anger and sadness.

    It's tough going from "soccer mom", football "team mom", classroom volunteer, to only being able to make it to home games. And only being able to make it to the school open house. It is a huge adjustment for all of us.

    Debbie, just like you, I avoid doing some things with my family because I don't want to ruin their fun. I'm afraid they'll have to take me home and miss out on a good time. Several times I've told them I'd take them somewhere and had to back out last minute. They've been so disappointed those times. So I've learned not to promise them. I so miss the little day trips and hikes the boys and I used to take. And so do they. Maybe we'll try some "back yard hikes".

    Well, again, thanks for the encouragement. And thanks for letting me vent. I know many of you understand!


  9. fibolady

    fibolady New Member

    really understanding our problems. why one day we can drive them somewhere and the next day we can't, etc. this year i have made some rules that help, i.e., some weekends i can take you to the movies but i can never pick up. my husband does a lot of the carpooling when he is home on the weekends which helps a lot. i really thought she had a handle on my dd, but recently my husband told me she still is having a hard time with it. i too, don't know what else to do.

    my oldest son is really great about it because of his age, almost 20. i just feel bad when he is home and brings friends over they must think i am "lazy" because most of the time i am resting, in my comfy clothes, or in my bedroom laying down.

    i used to do all the driving to activities and we lived far away from everything. we moved closer to the school, their friends, shopping, so now i am able to ask for help (carpooling) and ususally people are very generous. that move was the best thing we did to help with trying to raise a teenager with this dd.

    warm regards, fibolady
  10. Thella

    Thella New Member

    My children grew up with me sick all the time. They have never known me to be healthy.
    When they were teenagers and used to doing lots around the house to help me. I asked them what their friends thought of me not doing the cleaning or having an out of house job. I was wondering if they thought I was lazy. Basically I was wondering what my kids did to handle the situation. Here is the answer I got.
    "mom, if they think anything they never say it. They like you because you listen and you make them listen." Besides Who cares what people think or say. You are you and if they don't want to make a big deal out of a situation then they are not worth having as friends." End of discussion and end of feeling guilty.
    So if anyone wants to know what the kids think ask them.

    Cathie I think you were asking about another story for older kids. I think I saw moms email address. Maybe you could email her and ask.
  11. Jewelz

    Jewelz New Member


    I have been ill for about a year, but was pretty much bed ridin' by endometriosis the year before. I have a 5 year old girl and a 7 year old girl and a step son that is 9. My seven year old suffer's from ADHD and back 2 years ago she didnt understand alot of the pain (surgeries), etc. My husband has a herniated disc and is very limited to what he can do. Our children feel they are ill all the time now. And I blame myself so much because of it. Expecially when it comes to activites.. My 7 year old would go to the nurse every day and I would get calls about it. I never could imagine what "health" problems could influence on one child. Its a very big impact. I do show them alot of support and love.. Just pray they will understand later on when they becomes adults.

    They still love me and I love them. Were here to go through everything together.. It can only make us more bonded then ever I seem to think.


  12. Thella

    Thella New Member

    I think I got the name right.
    Do your children have an adult who can do the rough housing and more active things with them. They need to have that experience as well.
    I know they love you and they always will but they need to experience play with healthy folks to get a rounded education.
    I was lucky my husband was healthy and loved being in the outdoors so we went canoeing and hunting and camping with them a lot.
    So they had the healthy parent as well as the not so healthy parent.
    If you understand what I am saying.
    Maybe get the girls into guides or girl scouts as you call it in the states. And your son into hockey or soccer. If they have something to do that they enjoy you would be surprised how their health problems take a back seat.
    I think what I am saying is peak their interest in something new and see if the "I'm not feeling well, days start to become things of the past.
    I think that story by mom would help you out a bit as well.
    take care