Our son Robert has always had a challenging time sharing. We worked on sharing repeatedly in his younger years to no avail. An outburst would follow any suggestion that we all have to share.

 Recently we were eating a lunch of burgers and fries after a family outing. I hardly ever order fries preferring to snag a few of my husbands. This day he said, “take some of Robert’s, he has a huge amount.” Our daughter quipped “didn’t you know Robert was given a pass at birth to not have to share?” Of course, we laughed but as a parent I felt a sense of failure.

What is it about this syndrome that makes sharing so difficult? It has gotten better as he matured. He is working now and has no problem buying Christmas gifts for the family, spending his money. Yet this year, he was supposed to by a Secret Santa gift for a housemate. He choose a gift-card. At the register he said, “just put five dollars on, that is the limit.” “Are you sure?” I said. “That doesn’t seem like very much.” “No that’s the limit.” He stated again. 

Twenty-five was the limit. When his house mate got to the store to redeem it, he was furious as only someone with the syndrome can be. An outburst with staff trying to calm him played out in the store. Robert refused to buy another gift-card saying it was foolish. His staff finally did it with my permission.

This type of behavior is not as frequent as it was in the past. When he first moved to a group home there was a fight every month. I thought writing the checks would give Rob a sense of control. I was wrong about that. He would scream at me about not wanting to give his money away, the house was cheating him, it was too much money. Eventually I opened an account in both our names and just wrote the checks, problem solved.

Why is this behavior still happening in a thirty-three-year-old man, I ask myself? I looked once more for answers in the book Management of Prader-Willi Syndrome. 

Something I missed when researching my book Raising Robert is that people with the syndrome are hoarders. That explains a lot in my opinion. People in the general population who horde are aware that their behaviors are abnormal. Generally, they feel shame and hide out in their homes, acquiring more and more stuff.

This is not the case in people with PWS. They happily collect steal and acquire their favorite objects. They also inform you of their collection’s variety repeatedly.

 The book Management of Prader-Willi Syndrome does not feel that this behavior is Regular OCD. Instead, they state “persons with PWS do not view this out of the range of normal nor do they appear to suffer psychological distress. Distress occurs when they cannot engage in a favored behavior. It is more often the caregiver who is bothered by those behaviors than the individual. The book also states it has done studies comparing people with the syndrome to others with disabilities that have OCD. People with PWS respond differently and have more similarities to people with Autism.

My conclusion after digging deeper into these behaviors is this. Everyone with the Syndrome is an individual. These behaviors are manifested because of the way their brains are wired. You will probably be chastised for having a selfish child as I have. The behaviors will decrease as your child ages. Hang on to that, and know you are not to blame.