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Kids and chronic illness


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Hello, I am planning to start a local support group for those with chronic illness. One topic I plan to cover is helping children deal with the chronic illness of a parent. What have you parents out there done to help your kids deal with this huge issue? What specific tips could you offer, what works- what doesn't? Any feedback is appreciated.

Carmen

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Guest tearose

I'm remembering a lot in the past that was discussed Carmen. Go back about 18 months and do a search.

As for me, I realized that my kids would have to learn that their mom was sometimes strong and sometimes weak. I tried to compensate by using my time and energy with them in ways that were creative in quality but not energy depleting. I am getting tired but I know I went to great lengths in the past to write it all up. I 'll check back in a day or so to be sure you got the information you seek.

Oh, also check chronic illness websites!

take care, tearose

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Hi Carmen;

GREAT QUESTION!!!!!!!!!!!!

As a child, my mother died of cancer when I was 8 years old. Back then it seemed like NO ONE talked about anything. It wasn't until I was much older that I fully understood what she went through. But, one thing was for sure, no matter how sick she was I knew she loved me because she was there as much as she could be. A large part of her is still with me today because of that.

Now as a mother of 2 children, ages 12 and 6, and myself having dysautonomia, I find it very difficult to be flexible and fast paced as other families are now a days.

When it comes to my illness, I am very open and honest with them. My daughter lets me know when I over explain things and reassures me when I get disappointed that we can't do fun things I'd like to see them do.

Guilt is not an option!! Children should be allowed to feel angry, disappointed, and sad, but should be taught that parents feel that way too. What is most important is that everyone's feelings count.

Honesty is best! If they can ask the questions they are old enough for the answers. And it is really surprising what and how much they really understand.

Compromise! What you can't do in the hot sun, you can do in the cool of the evening. If you can't go for a walk with the kids, take them to the park and watch them run. If you can't be there for them physically you can always be there for them mentally. Either way, just being there is what stays with them always.

Having an understanding and supportive husband, who is a great father helps tremendously. If not, loving and supportive friends and families works well also.

This is all I have right now.

I don't know if you are a parent yourself, Carmen. But being a loving parent should come naturally whether you have a chronic illness or not. No matter what the situation love and understanding is what helps children the most. Good Luck!!

KathyP B)

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Hi Carmen -

check out my post re: book recommendations. the cereal for dinner book would be GREAT for what you're asking about. and also in terms of your inquiry re:marriage. Good luck getting the group(s) started!

:-)melissa

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Thanks everyone! I would love even more feedback regarding specific things done by all of you that have helped, or not, or which stages in life required different things for your kids. For example, my little boy has had a horrible time getting potty trained and I feel he is extremely insecure about my health. I feel he sees not pottying as a way to "stay my baby" (if he stays little mommy won't get sicker). Keep in mind I am a Master's level therapist so yes, I look for reasons behind everything! Any advice specific to the different ages of children and what has worked for you would be great.

Carmen

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Hi Carmen;

Sorry if I misinterpreted your question or what you are looking for. Since you are a masters level therapist I would love it if you can give me some pointers on how to help me as well as my children understand my illness. I would like to know the details of where and when your support group is in place.

I am sorry if this is a dumb question but is your example hypothetical? Children of potty training age usually don't have that much of a grasp of understanding a parent's illness and using it as a compromise. I don't think their thinking is that far out of the box. Potty training age is usually between 2 - 3 years old. If the child were older, say 5-9, I could see where being open and honest would help with this dilemma.

Again I apologize for seeming scatterbrained, but, it isn't quite clear to me what you are looking for. Are you looking for coping mechanisms from a childs point of view in regards to a parent's chronic illness? Or, if certain difficult or abnormal behaviors of children are attributed from a parents chronic illness, and how are these dealt with?

As I mentioned before I can only give from my own experiences. Everyone raises their children with the best of their abilities. I feel children adapt to what they know. Speaking as a child of an ill parent I can tell you that I was raised respecting my parents. And we did what had to be done. I felt very bewildered and alone when my mother died, understandably so.

As with raising children, I think people handle things on an individual basis pretty much the same whether there is chronic illness in the family or not. With both parents around children will find normalcy through any obstacle. Children only know what is normal by what they have lived. Each stage is a new experience for both child and parent. What else can they compare things to. Each child is different, apple to oranges, even in the same family. There are good days, and there are bad days whether we are rich or poor, or sick or well. I remember doing a study in my college psyc class, many many years ago, about coping skills of Latch-Key kids.

I am sorry if I am so off base here. Sorry if I can't help in any way. Melissa's post on her book recommendations sounds like a good place to start your search or in the archives as Tearose suggested. Good luck in what you are looking for.

KathyP :lol:

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Kathy p. you are right on target with all your responses. I was vague in my question because I am in the preliminary stages of starting up this group in south Alabama. When you get a degree in couseling, you get armed with a knowledge of a lot of theories. However, that is all they are- theories. Those of us who post on this board are living the REALITY of chronic illness. That is why I sent out a request of what really happens in your life regarding helping your kids cope with a sick mom (or dad). Books are great and a necessary starting point. In order to lead a group, one most have a solid back ground in the issues they are covering. Yet, what works in academia and the real world oftentimes are not the same. So, there are no wrong answers to the questions I've posted and any feedback is appreciated. As the group becomes more formalized I'm sure I will have very specific questions. Thank you!

Carmen

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Hi Carmen,

Great topic . This , I think , is a subject far beyond the reaches of what a general grasp of chronic illness is. When you sit mulling your upcoming appts. in the sterile coolness of every Doctors office with the absurd wonder of the inherent disdain for your symptoms , knowing patient # 3100035 bedside manner may not be the mantra for the day. Solice comes in the sublime. Reaching into your own strength , fears. The surperphulous control handed to these other people ; for don't they realise. can't they see. I just want to go home sit down with my kids and tell them Why the Old Man falls Down - can't talk etc. Sure they 're great ! they help pick 'em up or go get Mom. When he's on the floor , they'll get a blanket , a pillow - then just step over until he can get up. Its no problem watching movies with Dad in his room . To them he's not the guy in the sterile waiting room being poked , proded - treated to questions/ interrogations. No just the Old Man who doesn't walk like he used to maybe can't drive fancycars anymore -- But he's still Dad and they just wanted to KNOW what WAS/IS going on.

We always told our kids frankly what was happenning. Because they could see it. We would try to break it down for them to terms they could then would understand. Its interesting how people will ask your children but will not ask you. So we felt it important that there were no misconceptions. Now that being said. the strenght lies in living our with this as another part. Fitting it in so to speak. we have all made adjustments. Kids espeacially. They have been stars!! Best bedside manner I've ever seen .

got 5 Ages 16 , 14 , 13 twins 9 ,9

Slainte` Kite 7

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Dear Kite 7;

HERE HERE!!! WELL SAID!!! I couldn't say it better myself.

Obstacles are a part of everyone's life.

That which does not kill us makes us stronger!!

KathyP :P

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