How do you talk to your chronically ill child?

[Anonymous]

My DS, 4.5, was a transplant recipient at 10 weeks. Life is good, quite miraculous now, actually. However, we are soon to the part where he realizes that something is "different". He doesn't question his scar or why he takes medicine everyday, but the discussions about "shots" (regular lab work) are getting a little trickier. I also KNOW that the previous questions, plus others I can't anticipate, will come. To the parents out there of children with chronic illness, how and when do you begin talking to your child about it. how much honesty and at what age? No judgment here from how ANYONE handles this, just feedback and help.

I did a small bit of research via CNMC a bit of time ago and one of their departments wasn't really helpful. I have not circled back with them yet.
Thanks...very much.

[Anonymous]

A quick thought. Why not treat is as you would adoption, or any major event? Just talk about it casually, and as early as possible. Don't make it a big deal, just a fact of life.

[Anonymous]

I work at CNMC. I can connect you to the Child Life Department if you'd like - they help kids deal with chronic illnesses (both pre-treatment and post-treatment by providing (or helping parents deliver) age appropriate information.) You can reach me at [e-mail].

Also, I don't know what type of transplant your child had, but there are several really good books out there that are age-appropriate. Here is the link from Amazon. http://www.amazon.com/s/ref=sr_nr_n_1?ie=UTF8&rs=4&keywords=transplant&rh=i%3Aaps%2Ck%3Atransplant%2Ci%3Astripbooks%2Cn%3A1000%2Cn%3A4%2Cn%3A2785

I also have a former co-worker that was a social worker at CNMC and is now in private practice (Bethesda) working with children who have chronic illnesses. I'd highly reccomend her.

[Anonymous]

OP here...thank you and I hadn't thought of the adoption thing...I am just scared, actually, to handle the progressional questions that could possibly lead to death or something like that.
PP - thank you and I will e-mail off line...very much appreciated and a place to start

[Anonymous]

I used to work for some developmental psychologists - outside this area - but this may be something you as parents may want to consider - not necessarily for your son, but if he starts to have fears you will already have a relationship. Good luck.