Parenting a child with IBD

[NMMom]

Hi everyone,

Thank you so much to everyone who took the time to respond to my thread. The past few days have been full of ups and downs. One minute I'm crying (in private of course!) and the next minute I'm full of hope and ready to become an advocate and change the world for people with IBD. Most of all I'm just really worried about what the future will be like. With Ellie starting kindergarten in two weeks I'm so nervous that IBD will keep her from having the positive school experience I've always imagined for her. She is naturally a very quiet and shy little girl until she gets comfortable and gets to know someone. I'm afraid that this will make her seem "different" in the eyes of her peers or, if they don't know about her illness, it will keep her from making friends and getting too close to people. She has such a sweet and kind spirit and I don't want this disease to change that or keep the world from seeing it.

So...after all that :ysmile: my question for all of you is have you changed, or had to alter, the way you parent your child? With Ellie all I have to do when she's naughty or does something not so nice to her little brother is look at her and she starts crying. It breaks my heart to see her sad these days and I find myself, because she's been so sick, letting her get away with more. I don't ever want for my son to be resentful as he grows up that she was treated differently b/c of IBD. However, it's so hard not to "go easy" on her after she's gone through so much pain but at the same time I don't want to raise her to be a brat. Parenting has so many challenges without IBD that adding this diagnosis to the mix is throwing me for a loop. Any tips or suggestions or how you all have handled it would be so appreciated!

 

[crohnsinct]

You are clearly a great mom to be worrying about both of your children this way.

From my experience, IBD has not changed Olivia in the least. Even when she was on exclusive formula with no food what so ever and only water to drink she attended birthday parties and bat and bar mitzvahs and had a ball. She also has stayed very active in her competitive swimming. Yes, she gets tired a little easier, is having a terrible swim season and has had to miss a bit of school but we have been blessed with family, friends and a community of very caring and concerned individuals.

As for the discipline, I wouldn't change a thing. Just because they are miserable does not give them a reason to behave poorly. We have had to teach O that yes what she has to go through totally stinks but she doesn't get to take it out on the family etc. However, poor behavior is more often than not a sign of the disease rearing its ugly head (lack of sleep, nutrition, pain, fatigue etc) for us so we note and watch it.

All that said, we do treat her a little more special than before from time to time (especially during EN). I said to a friend I felt guilty for spoiling her and my friend put if perfectly. She said "there is a difference between spoiling your child and choosing to brighten their day". So I think if we stick with rewarding good behavior it will go a much longer way for all our children.

Just one more thing for us all to navigate, figure out and try to balance lest we get lazy and rest on our laurels!

 

[Farmwife]

I guess the way I try to make my Grace feel no different then anyone is to treat her no different. She has and will always tell me when she hurts. I NEVER ASK!!! Trust me, they know something is off and mommy can try to help it. The GI nurse said that is good I do that.
I have seen amazing stregth in Grace to deal with all this. I wish I would deal with all this as well. At this age she just wants to be a kid.

crohnsinct is right.:ywow: I don't let her (Grace) illness dictate her attitude.

When Grace is sick I ask my little man to help her. He always does and he gets special attention from me. I think thats way he's so caring toward others.

The biggest change is the food thing. She doesn't eat full amounts. Sometimes she's not hungry, which can last for days. So I always have snack in between meals. Which my son loves. I make sure to give him less. He would weigh 200 lbs by now with the way he eats.

 

[kimmidwife]

NMMom,
The treating them a little extra special is something a lot of us have struggled with. I know it has been discussed before. It is hard. I know I tend to give in to Caitlyn more easily and not require as much of her especially when she does not feel well. As for the way other kids will treat her, you would be surprised how accepting children are at that age. I think I would encourage her to be honest with them. Help her think of a simple explanation to tell the kids what her illness is about. Make sure they understand it is not something they can catch ( that is one thing kids that age do worry about) there is a nice book for young kids called toilet paper flowers. You can get it at Barnes and nobles online. It is a really nice explanation of IBD and she can share the boook with her friends.

 

[LilyRose]

Hello NMMum,

Thank you for rasing such a good topic. I hope you have found some good thoughts in the above posts. I have enjoyed reading them too.

I agree, it is wise to 'carry on as normal' if you can. I know other parents who have kids with serious illnesses have said the same thing.

Although, it is very very normal to want to spoil them. I loved Crohnsinstincts quote ,...'There's a difference to spoiling your child and choosing to brighten their day'. I shall remember that one. And to give the message that they may feel miserable and we are sad that they feel unwell, but they shouldn't take it out on their family and friends.

And I shall look out for that book Kimmidwife. I have been talking to my son (6 years old) a bit more about Crohns' lately. It is hard when he asks "When will it go away?"

I have found my son's friends have never said anything nasty, and the teachers are always very caring. So I hope your daughter will go well at school.

Lastly, the other thing I remind my son is that there are lots of children who have to deal with something - asthma, diabetes, severe allergies etc. So he is not alone in having to cope with something.

Best wishes to you and Ellie.
LilyRose

 

[RAISINGMI]

NMMom: I so "get" the heartbreak when we see our child suffer, and the worry about their social develoment, and the urge to baby them and let them get away with things because they've been through so much. But you have to raise her and discipline her just as you would if she weren't sick. To show her favoritism or leeway is not setting her up for success, and it will create a really bad dynamic in the family with the other sibling.

That being said, have there been times I've "spoiled" my son (age 13, almost 14, and diagnosed at the age of 8) because of what he goes through? YEP! When he was only 8 and not yet diagnosed, and had to have a colonoscopy with all of its "fun" prep and then there's the procedure, did he have some toys waiting at home when we got back? Yes. But I only did that with his first one. If he had siblings, though, I would have also given them a little something too.

I still have the same expectations I would have for him if he weren't sick - I expect him to get grades, to try hard, to be good to his friends and family, to do his chores around the house, etc. He has to live in the real world someday, right?

Also, remember, our kids having this disease also develops their empathy skills (always trying to look for the positive lining) - they KNOW what it feels like to be sick, uncomfortable, miserable even. So when someone else in the family, or one of their friends, gets sick with something, they may (hopefully) be quick to lend a helping hand and not judge. Many of the kids they go to school with are also battling something of their own - sickness, family problems, learning disabilities ... so I don't want my son to think that his Crohn's isolates him because everybody is dealing with something.

Sorry this is long - hope it makes sense!

 

[kiny]

Feeling of crohn is easy to describe for me with a rollercoaster, you don't really know what's next, but you do your best to go on it as little as possible, cause it always ends up making you feel bad. If you stay too long on the rollercoaster you don't even know what it's like not to feel pain, I do not think anyone knows what crohn is like unless you have it. If you are not in remission it is a constant battle, you can feel your intestine is fighting trying to preserve integrity, and it weighs on you, physically and psychologically.

 

[Sascot]

An interesting thread! As much as it's hard, I suppose it's important to keep disciplining your child so they can grow up knowing how to behave. I think it's ok to give them a little more leeway when they are really unwell as it is hard enough to be kind and considerate as an adult when we are tired and unwell - a child will find it hard to cope with emotionally. The only thing I would not tolerate is if they are being horrible to their brother/sister as that is unfair to the sibling.
My son has always been quite well behaved so I haven't had any real issues. I let him play on the playstation longer than I would have if he had more energy. I do find it difficult not to seem to spend alot more time with him rather than his sister with all the hospital visits, etc. I think it's important to spend some quality time just me and my daughter when my husband or mother is here to help with Andrew.

 

[dannysmom]

I do think expectations need to be adjusted when your child is not feeling well (not necessarily behavior) ... and it can be hard on healthy siblings ... but not as hard as the illness is on the sick ones. I have 3 kids, 2 with a debilitating health issue and one super healthy daughter. It gets complicated

I also like what crohnsinct friend said: "there is a difference between spoiling your child and choosing to brighten their day". We have been instructed by our doctor to make sure Danny has some fun in every day ... because life really stinks for him right now.

 

[DustyKat]

Hey NMMom,

I think one of the things I have found the most difficult to deal with is the emotional roller coaster ride that goes along with a having a child with this disease. The highs and lows can be so extreme and in time frames that prior to diagnosis you wouldn't have thought possible. There is no rhyme or reason to them, you may have had the most wonderful day and yet come the time to lay your head on the pillow you find yourself crying at the thought that the good times may all be taken away in heart beat. Or you may be going through dark and difficult days and yet you find yourself full of hope and positive thoughts.
When your child is well these ups and downs do start to even out though and it becomes less like the roller coaster and more like the carousel.

My children were diagnosed at a much later age than your little one but even so, looking back, discipline was something that didn't change. Right is right and wrong and wrong IYKWIM and I don't think you ever lose that sense of justice regardless of what your child is dealing with. What I did find though was that I didn't stress the small stuff anymore. I know there are things I let slide that prior to Crohn's I didn't but in the scheme of things they truly are inconsequential. People often say that when they have a near death experience or lose someone that is a kindred spirit it changes your outlook on life and I believe having a child with a disease like Crohn's does that too.

I have made many a concession and at times outright spoilt my children over the years. I have done it for a variety of reasons...the guilt of not being able to take this disease away from them, the suffering they have to endure, the fact that their lives will never be truly normal again, because I have been proud of their ability to endure and achieve...it has not changed them, they do not present as spoilt children, the disease has changed them. Having Crohn's has made them determined, driven, compassionate, strong, understanding, warm, sensitive, loving people with a wonderful earthy sense of humour and I sense/know that all the children here are just like that.

The fact that you are concerned that your son may suffer as a result of the way you may treat your daughter says to me that you have nothing to worry about. That it is already at the forefront of your thoughts means you won't let it happen. He will be fine hun because you will make sure he is. :hug:

:hang: Mum, you are doing fab!

Dusty. xxx

 

[AZMOM]

Dusty said it so well, I won't say it all again. But will say DITTO! :thumleft:

J.