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When it comes to my son, who lives with Alagille syndrome (ALGS), it is challenging for me to discipline him. Although he is now post-transplant it is still hard to “bring down the hammer.” I feel immense guilt surrounding his discipline.

I know firsthand that he has had a tough first 5 years of life. Between his ALGS, transplant, teeth extraction (current missing teeth and silver crowns), and alopecia, I feel like he needs a break where he can catch one. I do not want to do anything to upset him or affect his emotional state.

I constantly think about sending him into a downward spiral if he becomes sad over punishment and sometimes my mind goes to a dark place where the discipline could be the straw that broke the camel’s back and he might want to hurt himself.

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The problem with the difficulty I find disciplining my son is he gets away with a lot more than his siblings. The allowance of small things or handing out a warning in place of punishment like his siblings get could be doing more harm than good.

Read about HCP resources for ALGS

I know that discipline teaches lessons and provides structure. I know that he needs the same discipline as his siblings and other kids his age receive. If I do not provide the proper instruction for him, he could grow up disregarding rules and authority in life. And that is the last thing that I want.

I discussed with both our post-transplant psychologist and the transplant team the struggle I feel with discipline. They both provided sound advice and encouragement that it is OK and necessary. 

I tend to give in to him and allow him to get away with things. It is something that I am working on every day to try to get a better grasp on so that he understands the way that not only our household, but the world works. Just because he has ALGS and had a liver transplant does not mean that he is any more fragile than other kids or should be treated any differently in terms of discipline.