Question:
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.
Resources:
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Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.