My 7yr son is friends w/ 13yr w/ cystic fibrosis and who is in denial. How/what to do to help him enjoy life!?

Question

He lives with OLD grandparents alone. He sneaks out to play and doesnt care about med times ect. which tells me he is in denial. Grams told me about disease not him...also denial. He obviously is uncomfortable disclosing his illness. His grams would like me to discuss with him so I can make sure I assist with knowing his med times ect so to send him home if needed. I also want to help this sweet boy as much as possible to enjoy his childhood. I will know his med times ect but how do I deal emotionally as I will also need to inform my child and prepare him for what may come sooner than later. I want to be a sort of surrogate mom so he can be the YOUNG KID that he is and yet be informed enough to ease fears of the grandparents so that we can have sleepovers ect. I need all the help I can get with getting him to communicate and open up and accept and take responsiblity for his own health and to let him know we love him and will always be here. Please help me!

Answer 1

The child is 13...While his meds and therapies are important, he is at that age where he wants to be a "regular" kid! I'm sure he is sick of it all..maybe you could have him do his therapies WITH your son, it wont hurt your son to participate, make it a game...serve cookies and juice after...A 13 year old thinks they are invisible...they don't yet accept the consequences of their actions. I would talk to him, tell him you know about his disease and want to learn more, have him help you look up info, ask him to show you his meds and therapies...let him know you care. If you can afford it, make "deals"..he does his meds and therapies for a week and you all go to a movie. or out for ice cream. I think its great you care for this child...he needs it, not knowing where his parents are ...maybe they abandoned him and he thinks its because he is sick? He NEEDS the love and attention of people. other than his "old" grandparents..IF they are as OLD as you imply, I'm sure its difficult for them to handle him physically. He probably feels alone and unwanted...



I would talk to him alone the first time, he may be embarrassed in front of your son, or someone else.

As for your emotional health through this...loving and caring for someone is a gift, and what you get back is tripled.. just enjoy the time you have now with him. He may live to be 30 or older...no one ever knows when they will pass, just take each day as it comes.

God bless you.

Answer 2

He's 13 and 13 year olds aren't probably as good with taking their medicine, especially if it's new to them. I think I'd take him to see everything I could. He should experience life and do stuff he wants to do... big stuff.

I think he needs something cool to remind him of his medicines. Maybe a neat digital timer or a cheap pda. Kids like technology.

Also, does he know of anyone else with the disease? Maybe get some stories from books or online about other children with the disease and let him read them?

Answer 3

Let that poor boy be alone. He is thirteen and has been living with this for his life. It is his right to be left alone with the knowledge. Let him be the one to discuss it. He will bring it up when he is ready. For once, maybe he wants to pretend to be the normal boy that he knows he will never be. Let the grandmother worry about the meds. She knows what to do and she will take care of it. All you need to do is provide a safe enviroment for him to play in. Dont mother him.

Answer 4

i can understand your concern, medications are very crucial especially for conditions such as this one.

one way to convince him is to assure him that there is nothing wrong with cystic fibrosis, it's not contagious... i have a feeling that he is ashamed to have that disease that's why he is in denial or that he is afraid of the illness itself because to tell you the truth, most cystic fibrosis patients don't live past 30 years. if they do, they're considered lucky -- and maybe somebody may have told him that and he felt discouraged. don't tell him about the chances for survival (because that'll depress him) but do tell him that there ARE people out there with cystic fibrosis, and that he is NOT alone. there are stories that people lived a little longer than averaged because they were educated about the disease, and they followed the therapy religiously -- and this helped, A LOT. but one thing that needs to be done is for him to accept that he has this condition and that he can work around it.

usually, when counseling patients with illnesses or even drug-problem, there are secrets on how to talk to them about it. we want them to speak out, therefore we don't want them to feel discouraged or uncomfortable... so we try to assure them that they are not alone, it's pretty common, and that you don't see it as a disease or a problem... just something that we can work at. i usually don't mention the words "disease, illness, or problem" to patients, instead, i say the word "condition" (sounds milder don't you think?). and assure them that we will try our best (do not promise). but first, we have to do our homework and learn more about their conditions... i've dealt with patients who worry too much about their conditions. sometimes just by worrying, it actually worsens the condition. i usually joke around with my patients, it breaks the ice and they start to relax.