Ask Nurse Lynn: Supportive Grandparents


Male, 11, Deletion

My grandson has behavioral issues, and we try to help as much as possible when he is over. He is on medication, but his behavior seems worse at times. For instance, when he gets mad because he can’t get what he wants, especially in a store, will sit down and cry and most times it’s hard to get him to stop. He has terrible times at school which get out of control. He does take Lithium and at first it seemed to help but now his attitude can get out of control. His parents are divorced and that hasn’t been the best for him. I love my grandson more than anything and it hurts when my son starts saying he may have to go to a home. Is there anything we can try or do to help him? He is a sweet boy and very smart but sometimes it is difficult to keep him occupied. Any advice?

Nurse Lynn’s Response:

For many families, behavior management can be just as tough if not tougher than managing the food aspect of PWS. Oftentimes, they go hand in hand. Consistency and anticipatory planning are key. Setting limits and sticking to them can be difficult but are effective. There are times when you just feel so bad for the child and their situation that giving in to a behavior is just easier. However, this is reinforcing the behavior and will lead to continued incidents. I realize that as parents we are 24/7 and don’t really get a break. It is very challenging to manage all the stressors of life. We are here to help! We have a grief support counselor on staff that can help work through all these feelings and help find strategies to deal with some of them. Many individuals with PWS have delayed grief responses or are unable to articulate/identify their feelings. This is where counseling can help.

Divorce is never an easy thing but, when you have a special needs child it can be even more complicated. In the best of situations, each parent will communicate with each other, stick with a routine, and have the same rules and routines.

We have resources linked below for school success. If there is a county case manager involved, they can be great for helping community resources to get involved. Things like in home therapy, PCA and respite services. If there isn’t a case manager involved, reaching out to your local county disability services division would be a place to start.

If he is taking Lithium, there are blood levels that are routinely checked. Hopefully things are within therapeutic range. If there are other mental health issues, speaking with the provider will be helpful. We do have a peer-peer service where one of our experts can speak with the treating physician for treatment options.

Being a grandparent is a wonderful thing! However, there is also the difficulty of having double the worry. For your grandchild/children and for your own child and the difficulties of life. Being a source of consistency and support is very comforting even if you are feeling somewhat helpless.


Grandparent Booklet

School Success Toolkit

Grief support

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