Friday, March 12, 2010

How to Raise a Child with CF

The following issue is a very common one amongst the CF community. I just wanted to post the question and my response to see what you guys think. What would you have said?

Let me start by asking that no one give me the pat answer of "treat your CF kid the same as the non-CF kids" I know that in an ideal world we could pretend the CF doesn't exist and place the child rearing ahead of the CF, but the reality is that my first priority for my daughter is making sure she gets all of her CF treatments.

I'm really running into a problem with my three year old and discipline. Yeah, some of it is the age, but some of it is due to the fact that she is pretty spoiled in several areas. There are lots of things that I don't say "no" about for her. Its not about purposefully spoiling her -- but rather about fighting the important battles first. Alyssa HATES to do her vest and its a huge production every night. The only thing that works to keep her quiet and not ripping the tubes out or shutting off the machine is to let her pick the tv show we are watching. This means that at treatment time, whatever her brothers are watching turns off for the sake of keeping her treatment complete.

Another example is food. Alyssa has to eat like a CF kiddo, and that means that I allow her to have a wider choice of foods. If she doesn't like what I've made I try to accommodate her, if she doesn't eat dinner, she can still have ice cream afterwards. Different rules apply to her and the boys know it and deal with it.

But the problem is that she is beginning to see that different rules apply to her and they are spilling into all the other areas of life. She instigates issues with her brothers (they walk by, she pushes them or she purposefully pulls a toy out of their hand, or she throws a fit when the tv show is not "hers"). All of these not CF things get handled promptly by me. She gets a warning (unless she hits) and then a time out, but it doesn't change her behavior at all. Some days she'll get 10 different time outs (in her room). I talk to her all the time about good behavior and give lots of positive reinforcement for when she does share. But you can't exactly sing the praises of a kid who didn't hit their brother this time.

I'm going nuts here. And I know that a lot of this is because of the CF and how it changes the rules, but I just don't know what to do about it. I'd love some insight from those who have been there.

My response:
I have no CF children. I however have CF and think that my mom did quite possibly the best job ever. So of course with my advice, you can take it or leave it...

I would never ever ever say "because of CF". If you think you have problems now, wait until she's interacting in the real world where nobody gives you special privileges "because of CF". My mom treated me no different than my brothers. CF wasn't a central focus in my house. Yeah, I was a sick kid at times and had to go in the hospital and do my treatments 3 times a day, ok, so what? I was still a kid. I still got disciplined the way my brothers got disciplined (except a lot more cause I was a brat).

She's not eating the ice cream "because she has CF". She's eating it because she's 3 and likes ice cream. Don't finish your plate, no ice cream. If you're concerned about your daughter getting enough calories, there are powders you can put in milk that will add nutrition and calories. High fat and high sugar foods aren't the only way to pack on the calories. You can do it many other ways without her even knowing.

How do you handle your other kids when they disobey? Do the same thing for her. We are who we are; CF doesn't make us who we are. If she's this way with CF, she'd be this way without.
Schedule treatment time for the same time every night, that way, the boys can pick the show before it, and then when it's treatment time it's her turn. Simply allowing her more options and priority "because of CF" is going to create a monster.

I also agree that taking away something important to a child is usually the best option for discipline. At least, I know that's what worked for me, and I was a crazy kid.

Bottom line: I would treat a CFer no differently than his/her brothers or sisters. Life isn't going to be fair her whole life and that's not changing. Life isn't fair for all non-CFers as well. A lot of it is her age, but I really think you need to nip it in the bud before her whole mentality is shaped into "I have CF, therefore, my way or the highway".

With all of that said...I have no kids and I talk a big game now, but who knows how I'll respond until I'm in the situation. Just know that I get that and I'm just trying to help.


Was I too harsh? What would your advice be?

16 people had something to say...:

Graciy said...

harsh, no but brave, yes. I agree with you but I don't know if I would have had the guts to say what you did. My husband has 3 siblings without CF and one with CF. One of the non CFers is his twin sister. They never got treated diffrently and it did a LOT of good. My inlaws were awesome!

Katey said...

I don't think yo were too harsh at all! You said it very well.

My parents treated me just like my brother. The same rules applied to me as did him. If I didn't finish my dinner, no special privileges. I did my treatments (at the time, it was all by hand) like I was told. Yes, there were times where my parents may have given me a little slack, but for the most part, treated me like any other kid would have been treated. Even going in the hospital...the same discipline rules applied. Now, I didn't start doing treatments and hospitilizations until I was about 8 years old, but still. Not sure if that makes a different in how a child reacts???

I definitely don't see the point in spoiling your kid just "because she/he has CF." Yes, you do take certain things more seriously, and still make sure your child is healthy, but still. I'm glad my parents treated me like my brother. Like Graciy said, it did a lot of good!

Laura said...

I've never treated the kids differently, Katy (the youngest) has CF and was always a very picky eater. We just kept fruit & veg & snacks around all the time. As a result her brother is a gannet (he eats all the time - but is stick thin) and her older sister loves veg raw.
Somebody told Katy where meat comes from at the age of 18 months and she insisted on being vegetarian for the next 3 years, she would only eat a product if we showed her the label had the v sign on it.
That wasn't a problem, we made veggie meals and everyone else had meat when they wanted it. Eventually she started adding ham chicken and bacon back into her diet. She still wont eat beef or lamb at 15yrs.
For over a month the only nutrition she had was tomato ketchup and cheese. I've always been strict that they eat food before they get sweets or dessert, even if it's only half a sandwich. If it didn't seem to be much then I would wait half an hour before I would allow them near the pudding, if they're hungry they eat. Like I said there was always food on hand.
Luckily, she has never needed much medication or physio, she has always been ok with it on the occasions she has needed an inhaler or medicine. Her babysitter had special needs training and kids with asthma so taught her some tricks with the inhaler and spacer when she was 18 months old and she loved it for the next 2 yrs.
She knows she's special and she is so very intelligent that you can't really trick her (we used to say ham sandwich was veggie if she asked)but she always gets the same discipline as the others.
As the youngest, she was always trying to do the same things as her sister and brother, luckily she has also learned from their mistakes as they've all grown up. It will balance out eventually.

Jesse Petersen said...

No, you speak like someone who has been Alyssa. I was raised as an only child, so I don't have any sibling comparisons to have any issues with, but I WAS pounded with chest PT 2, 3, 4 times per day from as early as I can remember until 14 or 15 yrs old. I did my aerosols or I didn't do sports (we even got a DC/AC adaptor for the car to do aerosols on the way to sports).

My mom put powder in my milk for breakfast every single day and it was a treat to go through the hole batch and get to finish off my morning with plain milk.

I was a miserable, angry kid.

Would I change a thing about how my health was because of it?


Rebecca Fish said...

As a mom of two young kids with CF, I have already found myself trending the same way as the author of the post. I do agree with much of what you wrote - and I find it encouraging that you turned out well being raised as "normal" as possible. However I can understand the authors reasons for her actions. I want my kids to get enough to eat. And when my son refuses dinner, it is an inward struggle not to just give him pudding or a cookie or something just to get enough calories in. But I do try to remind myself that as a toddler, when he's hungry enough he'll eat. And when I DO get him to eat, i just have to load on the fat!

I think having CF kids means it is just more work for us as parents to constantly be aware of what our kids are eating and doing. It is easier to just let them get their way so that they will cooperate and we can get the treatments and meal time over with. But I completely agree that it is not a long-term solution.

I think your suggestions to the author about making vest time at the same time each day, so she gets to pick the program (not CHANGE the program...) is an excellent idea. Minimizing the 'because of CF' attitude, and focusing more on the 'this is the schedule' attitude. Everybody wins, and we won't turn out kids into spoiled brats.

Terri in Toronto said...

I have two daughters with CF and have never treated either of them any differently than I would a non-CF child. I don't know any difference myself. Both my girls grew up knowing they were loved but neither got any special treatment. I think you were spot on in your comments and hope that this Mom will take your advice to heart. I think it's hard enough dealing and living with CF already and feeling different from everyone else. Why would you want your kids to feel different at home too....

This is my first time commenting on your blog but have been reading it for a while. I absolutely love and now have both my daughters reading it as well. Thank you!

Samuel's Mommee said...

I think Ronnie hit it on the nose. Kids are still kids first and will push their limits. My son is 2 (he has CF) and is always trying to get away with something. If I gave him constant exceptions "because of CF" then he would be a terror!

He has some trouble gaining weight but also deals with the normal 2 year-old eating habits like food jags. I typically make something special for him at least once a day (usually dinner) and if he doesn't like it, he can try what we're eating. As much as it kills me sometimes, he really does eat when he's hungry.

Surly it's difficult keeping the health of the daughter a priority, but consider the brothers. Sooner or later (probably sooner) they will resent their sister. She "gets" to eat ice cream and watch whatever TV shows she wants and they still have to follow the rules. A recipe for disaster for sure!
Good luck.

Crystal said...

You were just saying what needed to be said. We are dealing with the same problems with a 5 year-old with CF. He, too, is spoiled...mostly because he's an only child.
If he doesn't eat his dinner, he doesn't get the dessert he wants. Intead of ice cream, he gets string cheese or yogurt. Of course, he is now saying "but I have CF and NEED ice cream." It used to break our heart, but we learned quickly he is using it against us. If he acts up or "demands" that he watches his show when it's time for his vest, he gets no TV.
It's tough raising a child with CF, but stay strong.

Tara said...

I am a mom of a feisty 21/2 year old who also always wants her way, but I am the parent and because she has CF, that will not change it. Rules should not change because your child is ill. Here is a book that was written by Foster, who was co-author of Love and Logic. He teamed up with a CF mom and wrote the book "Parenting children with Health issues" Excellent read. I heard him talk at a conference where he stressed how important it is for a child to own their disease. It is most important to teach them that now so that when they are teenagers, they know that it is important and they take care of themselves when they are on their own. The book is great. Remember the child is the most important thing. It reminds you to remember that you are dealing with a child and not the illness. It says "We are dealing with an aware and sensitive being who needs to build character, be related to as an important person, and develop self-respect and respect for others. This may sound obvious, but it's not."
Hope this is helpful! Tara

CFMama said...

Thanks for this Ronnie, I appreciated reading your advice. I know I am going to have to go through the same problems raising my lil CFer. The biggest problem for us is food. He knows he can eat what he wants and he isn't even 2 yet.

Jessie said...

I'll be the one to stand up and say that I completely identify with Dad! It is so easy to get into a routine where we make concessions for the CF child in order to get them to eat and to do their treatments. We see what they go through and often times it is a real struggle to make ourselves put our foot down and have them conform the hard way. The good news is that she's only 3 so Dad has a wide-open opportunity to start changing her behavior.

Obviously he knows a change is needed or he wouldn't have reached out to you. He also recognizes the areas that need to be changed, and this is a huge accomplishment.

I think the best thing he can do is set up boundaries and ENFORCE them. She needs a suitable environment to do her treatments, but if she's ugly to her brothers or doesn't listen then she'll be doing them minus the T.V. I also would not let her always pick the channel. Baby girl would just have to be mad.

Food issue: one thing is for sure, the more you cater to her the more picky she will be and the more resentful the boys will become. I have learned this the hard way but my sons are now 8 and 9 and they clearly know my rules on eating and desserts... even if it nearly kills me to not let my CFer have that calorie-filled frosty from Wendys!!!!!!!!!!!!!!!!!!!!! My CFer is so bull-headed that he has actually skipped meals because he refused to eat what the rest of us were eating. Its hard and you'll feel like the worst parent on the face of the planet, but it will do wonders for her to see that she can't move you. Know this, she'll get hungry and she'll soon realize that she had better get with the program.

If my boys were good through the week I would let them get a Frosty on the weekends. If my CFer was being ugly and not listening then he didn't get a Frosty. He cried and I felt like dirt but he learned that I was not playing with him.

As far as the behavior, you better put your foot down now or you'll have a monster on your hands as she gets older. If you think she's bad with her brothers, wait till she starts school!!!!! If she knows she can get out of schoolwork (or entire school days for that matter), she'll play you like a fiddle. Stop this behavior now. I've been there.... so trust me. Again, baby girl will just have to be mad. She'll get over it and she'll thank you for it later.

DougJillAbsandAl said...

Harsh NO! I have 9 year old twins, one with CF and one without. They have to be treated the same. I do however, commiserate with her about the food thing. I cannot get enough calories in my Cfer. I cannot add the powders etc. to her food cause she is too smart for that and if it changes the consistency of her food or drink...forgot it, she wont eat it. Alison (w Cf) is allowed to eat what she wants, when she wants, period. She is 9 and only weights 40 lbs. Her sister just deals with it, and really does not was said life ain't fair. But as far as everything else goes...the same. As a matter of fact, Alison is in trouble far more than her non CF sister, cause she is a stinker!

The Liberto Family said...

Ronnie you are right on! From the first day finding out Melissa had CF my husband and I said we will not let CF control her. She is now 2 1/2 and she doesn't get special treatment because she has CF. If she doesn't like what we are having for dinner then oh well. I know she needs her calories, but there are just times she starts pulling her terrible two fits and we don't put up wtih it. We tell her she needs to try her food and if she will at least eat 4 bits then she can get down. Most of the time after she had 4 bits she will finsh her plate. If Melissa wants pudding or ice cream the rule is you have to eat your food.
Yes, Melissa gets in to trouble has to go to time out or sometimes we take away her favorite toy to teach her a lesson.
Melissa is so good about taking all her meds and is even doing really well with her TOBI treatment and that is a long time for a 2 1/2 year old to sit still. Thank goodness she loves books and yes we do let her watch one of her favorite shows on TV, but she doesn't have control over our life. The treatments are a part of her life and our life.
It is so easy for your kids to try and control the rules.
Melissa is the only child but she does go to preschool and she has to obey the rules at school. It's not CF telling her to hit or bit her firend it's Melissa being 2 and testing the teachers.
That's my thoughts on this subject.

Courtnie said...

I am struggling with this issue.

While in a perfect world you could say that you shouldn't treat CF children differently than non CF children I think it's more complex than that.

Luke (2) is sensitive to meds. It seems like a lot of allergy meds and especially prednisone (which he is on quite frequently) make him bi-polar/angry. Disciplining that is NOT easy. We believe in spanking as a last resort and I can honestly say that I rarely spank. My problem though is knowing when his temper tantrums are toddler rants or the meds 'acting out'. How am I supposed to handle that? I don't want to be too harsh on him but I also don't want him to think that he can throw himself on the ground and get his way every time that he is upset.

Maybe I am overthinking this but I seriously do NOT want to discipline him for something that is beyond his control. He can not tell me that he feels nauseated from IV antibiotics or that he has a headache and so he acts out. How am I supposed to know if I should discipline for that? I know that with other kids it would be the same, not knowing when they are feeling ill or are being just plain rebellious, but when it's med issue I just don't know what to do.

Some things he does are clear cut. I just put him in time out for getting behind our TV stand again, that's not something that he is doing because he feels ill, but when it's something like throwing himself on the floor because I tried to pick him up I don't know if it's because he is being a stinker or if his tummy hurts.

This probably makes no sense. I have talked to Dr's about it and they do agree that certain meds make toddlers have behavorial issues. However, no one can tell me how to distinguish between that and normal toddler behavior. I feel so lost, so under educated, and so much like a failure as a parent. When Luke is on prednisone it's flat out embarrassing. People stop me in the store and tell me to get my child under control. People in church throw him out of sunday school for disobedience (common occurance as well for the hyperactivity from Albuterol). I have spent many hours thinking about this and many nights falling asleep crying because I feel like I have no control of my toddler.

I just need answers and I don't think that I CAN treat him like his carrier sister. She's never been on anything stronger than Nystatin in her whole little life.

Anonymous said...

I had two girls with CF (one is 45 and still doing fairly well) and one without. I did tend to spend more time with the older one with CF-mainly because she was sicker than her sister. She was three when she was diagnosed and already had heart problems as well as digestive and lung problems. I knew I wouldn't have her very long-she died just before her 11th birthday. I was honest with the other two girls and told them that their sister was very sick and I think they understood. I never had any problem getting any of my three to eat-probably because I never made a big deal about it. The food was there and, even if they didn't like something, they had to eat about one tablespoon of it. They could fill up on other food on the table (I always had meat, a starch and at least one veggie and sometimes a fruit) but I NEVER fixed special food for any of them. They all grew up eating (and liking) almost everything. They did not get dessert unless they cleaned their plates. I always had a rule-if you take it, you have to eat it. I always let them have cereal for a snack unless it was just before a meal and, if just before a meal there was an apple, orange or other fruit that they could have. That way I knew that they would never go hungry.
You don't do your kids any favor by making them feel that they are special and don't have to follow rules. Yes, they are special to you but others will just think they are spoiled brats and they won't be very well liked by their peers or other people. I am proud to say that I raised two very well liked and productive adults. My daughter who died was also very well liked by her peers and everyone else. I always told them that they could do anything if they wanted to enough (sometimes not true but at least try). You never know if you can do something unless you at least TRY. It might be more difficult for them but don't give up easily.
BTW, I do believe in spanking-not when you are mad at them but, when they need it, a swat or two gets their attention!!!

Meghan said...

I agree with what you said Ronnie, you can't treat one kid differently than the others. You think they understand, but they don't, they are just kids. I have 4 kids in my house, my 2 step kids have CF and we treat them all the same. The younger of the 2 girls with CF had a lot of discipline problems and we got on a program with their mother where all the rules and punishments are consistent at both houses, and she's really turned around. Consistency is HUGE with disciplining children. I know it's hard when one child has CF and you are worried that you aren't going to have the same time with them that you'll have with your other children. We went through the same thing with my fiance's parents. They wanted us to treat them differently and they would get mad at us if we punished them for misbehaving, or not letting them have dessert if they didn't eat their dinner. But rules need to be rules, and all children should have the same ones.
I feel for you on the fighting with the treatments though, the younger CFer would kick, scream, punch, bite, and throw herself into things because she hated doing them so much. You just have to find something to distract her. One of the ways I got my step-daughter to do them was to let her do my hair while she did her treatments. I don't know why, but she loves doing it. She just brushes my hair and pretends she has hairspray, etc. I just sit on the floor in front of her and before she knows it the treatments are done.