Talking to your child about his illness

[jland25]

I was wondering if anyone had some experience to share about talking to your child about his or her illness. My 12-year-old son was recently diagnosed with Crohn's and while I want to be positive and reassure him, I feel he also needs to know that this isn't a cold that will be cleared up in a week.

My situation is complicated because my son is on the autism spectrum. He understands he is sick and is happy we have "gotten to the bottom of things" in terms of diagnosis, but I haven't gone into much detail about treatment or the fact that he will have frequent doctor visits, blood tests, etc., at least for a while. I can't just say nothing, however, because surprises scare him the most.

Anyway, I was just curious about how others have approached this topic. I'd like to try to get the balance right…or close to it.

Thanks!

 

[afidz]

I don't have any advice for you, I don't have kids yet, but I wanted to come by and give you a hug. I hope that you find an easy way (although,there is no easy way) to explain to him in a way he understands. I don't know where in the world you are located, but you might want to check the Crohn's and Colitis Foundation website, they may have tips on how to explain Crohn's to a child. Of course, since your son is autistic, those tips will probably just be a baseline for you, but it might point you in the right direction as to how to explain it to him. :hug:

 

[Mehita]

My son is a couple years older, but tends to run on the sensitive side, especially when it comes to medical things. Until recently, I've tended to only tell him what he needs to know for the moment - more like one thing at a time. For example if he has scopes and an MRE next month, I'd only talk about the scopes, get through those and then move on to the MRE. Does that make sense? Too much overwhelms and sometimes panics him. I also don't pretend to know everything.

I do think it's important that he understand what Crohn's is though so he knows when something is not right with his body and can ask for help.

Also important is that he understands that Crohn's comes and goes. There are good times and there are low times. Even though this is a lifetime disease, I will occasionally mention how close scientists are to finding a cure or if some exciting news comes out.

It's a balancing act, like you mentioned. If you can sort of filter through what you think he NEEDS to know and slowly build up from there, that's worked well for us.

 

[lbligh]

You know your child best. I agree with Mehita that it's essential to stress that Crohn's "comes and goes" and that the words usually associated with that are flare and remission. Also, that it isn't fatal. I do think that should be directly stated.

If you are too reticent and make the illness a mystery, a lot of people will presume it's worse than it is. For that reason I've been very open with all my daughter's friends and their moms. I wouldn't want my daughter to overhear people speculating about what her illness might be, leading her to think we're hiding something from her.

We will say "Do you want to know all these details?" and usually she does.

 

[crohniekid]

Welcome! This place is a great source of information...especially for kids as most of the stuff online is much more geared towards adult disease!
R is 9yrs old and was diagnosed in February of this year. He does better with more information and needs to be part of the decision making process. So our GI treats him more like a 15 year old in terms of explaining things and asking him his opinions. R feels more in control that way and stresses less about the 'what ifs'. It has also helped him to stop hiding some of his symptoms in hopes that if he just ignores it...it will go away. We found a very good video that is very appropriate for kids (our whole house watched it). Go to badgut.org and it is the video in their news section.
Or maybe you could present the information he needs to know like a story or can order him one from Amazon. There are a couple there if you look them up.

 

[my little penguin]

Try these
Toliet paper flowers book

http://www.amazon.com/gp/aw/d/0929173473?pc_redir=1395795019&robot_redir=1
Ibd and me coloring book by ccfa

http://www.ccfa.org/assets/pdfs/activitybookweb.pdf

Pete has crohn's comic book by ccfa
http://www.ccfa.org/assets/pdfs/ccfa-online-comicbook.pdf


And we aslo got Jeff talks about Crohn's disease coloring book
It was mailed to us free
http://www.child.ca/news/book-launch/

 

[ChampsMom]

Hey Jland...

My youngest is on the Spectrum - he is not my IBDer, but last year he took an awkward fall and we learned he has a "mass" in his arm. Over the next couple of months there were a lot of hospital visits, tons of tests and over the course of the year he broke it 4 times (yes... 4 times! eek!)...

Along the way I explained to him what was going on... Did he understand he had a "mass" and no one else in our family does - no... but could he see it on the xray? yes... Does he understand that the mass is not going away? probably not, but he does understand now that he has to be more careful than the average 4 year old. (I should note, the mass is benign!! yeah!!!)

I did a lot of explaining and answered the same question multiple times for him, on his level.... You know your child best and will likely see that "deer in the headlights" look long before anyone else and realize - now is the time to stop - too much info - over load.

My eldest (my IBDer) is actually on the spectrum with VERY mild Aspergers - most folks would never notice (he's also a bit OCD and has mild tourettes - which is more noticeable, and most folks overlook it)... He was 13 when he first became ill and wanted to know EVERYTHING - every detail, every picture, every med, every, every - thing! For him I shared until they started sending us to Oncology because of concerns over the lymph nodes in his abdominal cavity. I never shared what the word "oncology" meant and it was the day we were released from the clinic (after 6 months of visits) and he was cleared that he found out (doctor said, he's OKAY and I cried!). On that one he said, "Thanks for holding out on me Ma."

God bless you and your son on this new journey...

 

[Jennifer]

My situation is complicated because my son is on the autism spectrum. He understands he is sick and is happy we have "gotten to the bottom of things" in terms of diagnosis, but I haven't gone into much detail about treatment or the fact that he will have frequent doctor visits, blood tests, etc., at least for a while. I can't just say nothing, however, because surprises scare him the most.

I can't help as far as Autism goes but I don't really remember my parents having a sit down with me about my illness. I went to the doctor and did all the tests and took my medication. I listened to the doctor and did what they and my mom said but I honestly didn't fully start to understand the disease and how I should be more responsible until my later teens.

I was 9 when I was diagnosed and seemed to take everything quite well. I just wanted to feel better so if it took a handful of pills to make that happen, I was willing to do it. I know my mom never went into super detail about my illness. I just remember her saying that we don't want it to get really bad otherwise I might wind up with a fistula. Then she explained what that was. Sounded pretty horrible to me. There was some truth to what she said but I also don't think it was a scare tactic either. Honestly I don't think she knew much about the disease either other than we needed to treat it so it doesn't get worse.

Dunno if that helped or not but good luck. :hug: