Hi Ash. I suspect most every parent has been where you are. And I second the recommendation for Parenting Children With Health Issues. It's outstanding. A bible for any parent. And the techniques are universal - they apply to children without major health issues too. The techniques are part of Love and Logic which has a great website and numerous materials too. I really believe you will find it not only helpful, but downright liberating.
My 9 year old was diagnosed at birth but didn't want to know much about CF until lately. He's just really starting more incisive questions. But he has always asked why he takes enzymes and no one else in his school does. And why others don't do chest therapy and nebulizers. So we've had varying explanations at various stages of his life to these repeat questions, depending on his attention span! My central theme, though has always been to help him think about what challenges we all have. My mantra is Everybody is Different. My personal philosophy and life experiences tell me that if you pull 100 people off the street and start asking questions, you will find 100 stories of lives that have experienced medical, psychological, physical, legal, emotional tribulations you would never want to personally experience. I do not mean to minimize the incredible burden that CF is on an affected individual and the people who love them. CF is one of the most time intensive conditions out there; it is without a doubt hugely emotionally and physically debilitating. No one on this forum doesn't know that already! But recognizing that you are not alone - that all of us experience challenges can help. Obviously that's not quite the way to explain it to a 7 or 9 year old. But for my little guy, I've helped him simply recognize the challenges around him. He has a friend at school who has peanut allergies and has to sit at a different table at lunch. What would happen if he got mad and just ate a Reese's cup?! His school also has an older student permanently in a wheelchair. What would happen if he refused to use it to get around? Another child has a trach. What happens if she pulls it out and throws it on the floor like I suspect she would like to do sometimes! Another has to go to the office at lunch for insulin. What would happen to her if she ate without her insulin? And there are of course various children with asthma, glasses, autism, etc. Yeah - there are lots of kids that look "normal" to you, but they just aren't old enough yet for them - or you - to know what their challenges are; but they have them. If we're contemplating not doing our treatments, or not taking our meds, I have asked how would you feel to see your peanut allergy friend stop breathing at lunch? Or see your classmate dragging his legs down the hall on the floor? That's a bit of emotional blackmail you may not want to use, but I have pointed out the personal and emotional consequences of non compliance before when needed! Now, I'm not suggesting that's the end of his feelings of being different, but it does usually help him keep things in perspective. And I have certainly said, I know hon, do you just want a break from the vest this morning? Ok - let's go ride our bike or do some gymnastics! Swim, climb, shoot a few baskets. Control. He feels out of control of his body and his time and his choices. He feels CF is controlling him and he will show it that HE's the one in control. So I acknowledge his feelings and allow him to exercise some control. Smaller ways that are very effective and detailed in the book include simply saying things like - do you want to do your vest now or in 10 minutes? Do you want to watch TV or play Minecraft while you're vesting? Control. Let him have the control he craves. After all, he really IS in control, isn't he? You can't really force a pill down his throat or physically catch him and put his vest on for 30 minutes without his agreement. So let him choose the things he can - like when, where and how he does these things. But not usually whether he does them.
Sometimes, I let him experiment just a bit. Recently he started "forgetting" to take his enzymes before meals. Now we all know how the chronic refusal to take enzymes can have disastrous consequences and I wasn't going to let that happen. But no matter what conversations we had, he kept "forgetting" at school. It was interfering with his feelings of being "normal" around his peers. Ok. Got it. I kept talking to him as a parent. But he was still "forgetting." So I would gently ask a few questions when he got home. Wow, hon. Really gassy today huh? I wonder why? Do you have any idea? He'd look down at his book and ignore me. Spent all gym in the bathroom again? Oh my gosh, hon. What can we do to fix that? I know you love gym! Let me know how I can help! Eventually he volunteered that he still wasn't taking his enzymes and how he didn't want to get his enzymes before lunch because he would have to give up his seat next to his friends to go get them. So we brainstormed an acceptable work around with him and his teacher - and his classmates - and it's been okay since. One more bullet dodged!
We do NOT however experiment on his TOBI. No no. TOBI is special. We make TOBI so attractive he can't resist. He can stay up 30 minutes on TOBI nights. He gets 30 minutes extra on the electronic device of his choice during TOBI. It's the exception to our maximum screen time in a day. We have NO problems with TOBI, at least not right now! When he's not on TOBI, sometimes I will say it's bedtime - and he will say - "Don't I need TOBI?" When he was your child's age, he got an extra booster pack of Pokémon for a compliant doctor's visit, or a week of perfect performance on . . . . whatever he needed to do! He's a bit past Pokémon now, but Minecraft . . . . anything Minecraft is a great motivator.
I truly like the idea of Skyping. Kids this age really don't have a forum - they're not usually proficient spellers or typists yet. But skyping sounds great. I would love to see a Skyping forum for kids! When DS was having lots of questions about being the only one vesting, I found showing him vesting videos on You Tube were absolutely healing for him. To see another kid vesting - and perhaps dancing to music while he did it - brought a huge smile to his face. He wasn't alone. Maybe we can start a thread with lots of links to helpful videos of other kiddos nebbing and vesting, even swallowing their handfuls of zymies at a time. I also found that some of the comic books our CF Center gave out explaining things like the need for enzymes with superheroes were better at convincing and explaining it to my little guy than I could ever do. And for him to see it in print, not just being told by Mom, opened a whole new world to him - a world where he wasn't alone.
Hugs.
