FranMan32

I am a Child Life Specialist. We address the psychosocial needs of hospitalized children. We promote normal growth and development through education, socialization opportunities, play, and medical play. It appears you're doing a terrific job with Lucas in your approach to the whole matter. At his developmental age, it is absolutely best to provide concrete information. Focus on sensory information. Abstract concepts aren't going to have much of an impact on him (good or bad). You can tell him he's "safe" (if he's scared during a lab draw or other procedure) but that's still a relatively abstract concept. Telling him that Mommy and Daddy are "here" and holding his hand are going to have a much deeper impact. Stick with concrete.

You also mentioned not wanting him to understand the whole scope of the matter. The gravity of the situation is real. It won't change tomorrow. There's no rush to discuss outcomes just yet. That doesn't mean he should be sheltered in any respect. You already know this about Lucas, he has a wild imagination! He probably says some pretty outlandish things sometimes that make you wonder or say "shit, that was really weird." Imagine for one second that wild imagination taking root with a medical procedure or side effects of some intervention (IV infusion with dramatic physical side effects; lethargy, nausea, vomiting, etc.). He may have been exposed to those ideas only in passing when he saw something about zombies or some cartoon character dying a miserable death (as cartoons depict on a regular basis these days). Once an idea like that takes root it's very difficult to come back from it. By very difficult I don't necessarily mean days or weeks (although it could be the case). It may just be an especially difficult doctor visit. My policy is that there is no reason why a child should have to hurt or fear the hospital experience. There is no such thing as too much truth.

Since Lucas was diagnosed at six months, you're right about him only ever having known this life. Even though that's the case, it doesn't mean that the medical environment is necessarily a welcoming one for him. One of the simplest means of facilitating a positive medical experience is by giving Lucas a medical play kit. They're super cheap and you can get one anywhere they sell toys. This allows him the opportunity to become desensitized to medical equipment. It presents a form of the medical equipment (stethoscope, blood pressure cuff, etc.) in a less threatening form and a less threatening environment (home or waiting room). "Every time he's in a hospital or doctor's office, he loses all control, all autonomy. Having the ability to manipulate medical equipment (his play kit) allows him some semblance of autonomy and control. Get him a doll that can be the "patient." A lot of parents make the mistake of playing doctor with their younger kids. Lucas is only three years old but I'm sure you've also seen just how strong the little guy can be when he hits/throws things. Aggressive behavior isn't always a bad thing. Remember, most adults have trouble communicating their emotions. You can expect a three year old to "use his words" in an emotional situation. Using a doll to play the "patient" will allow Lucas to give him a shot in the eye if he feels like. He'll be able to put the stethoscope wherever he feels. You'll be tempted to interrupt his play to correct him. Don't. Let him work out his frustrations. He's a smart kid. When he's winding down just ask him (debriefing period) "is that what the doctor did to you" or even "does that hurt your Buddy?" He'll be able to transfer his emotions. The only way he'll know what his Buddy is feeling is by speaking from his personal experience. This will allow you to address any further emotional concerns or his fears regarding the medical experiences. You can't address a problem until you identify it.

I just wrote you a whole book. Sorry about that. If you have any further questions or concerns regarding this topic please feel free to message me or reply on here. I love my job but it's so much more than that. You will have plenty of experience with Child Life Specialists as Lucas' medical experiences progress.

You've a bevy of support among us all. Ask US anything! You can't update us enough on the progress your little guy makes. I think we've all at least a small stake in this now.

I don't have children either. I'm a young professional. I don't get the same thrill from this job that other CCLSs get. Some think it's cute to work with children. Some don't. I'm one of those that doesn't. The most thrilling part for me is seeing a frightened human being with the capacity to learn and knowing that my interventions facilitated an almost tangible transformation in that child. It's incredible what humans are capable of when equipped with the right information and opportunities. I see children, quite frankly, develop right before my eyes.

Some kids aren't frightened and scared because of their hospitalization. That happens too. I don't ignore them though. I make sure it's the best damn hospital experience. Just because you're stuck in the hospital doesn't mean you have to be miserable too.

I'm glad the hospital you were in had the FunCenters. I can't say enough of about the Starlight Starbright foundation. I have worked with them on a regular basis. Any time one of my machines stops working or even if I think it's been compromised in the least I can just call up and they'll replace anything I ask. They also have Wii and Xbox FunCenters. I have both!

The hospital I work for has a terrific community partnership so we have a ton of funds for extravagant forms of entertainment. At 16 I wish the place you were in had a teen room. It's a wonderful amenity in many children's hospitals (with available funds).