For Parents

you are not alone.

This parent section is divided into age groups so start with whichever link above fits your child’s age.

There is a great deal of information available to parents and care providers of persons diagnosed with Prader-Willi syndrome.  Families and professionals are encouraged to learn as much as you can about medical and therapeutic treatments and how to manage the symptoms associated with PWS.

As you gather information from this and other PWS sources, you are encouraged to connect with other parents, care providers, and professionals who have walked where you’re now walking and can share their wisdom and insights.

PWCF is here to support and empower you as you parent your child during the school-age years. Below is a Quick Guide to learning more about areas of particular interest for parenting the adult with PWS.

Of Prader-Willi Syndrome’s myriad symptoms, sometimes even surpassing the life threatening and life-limiting hyperphagia food drive, maladaptive behaviors typically rank as one the greatest challenges. While PWS is a spectrum disorder and not everyone will exhibit the same degree of behavioral symptoms, the strategies presented within the resources below will help you better manage PWS’s behavioral symptoms. For more information about PWS or to request a PWS Training for your school, clinic staff, residential or vocational work staff, just contact us!

Behavior Tool Kit
Blind Rage 
Contract Form
Empathy is a Powerful Intervention
Empathy Protocol 
Lying and Confabulating
Managing a Meltdown IPWSO 
Never Spank the Child with PWS 
Overview of Food & Behavior Management 
Personality Greyscale 
PWS Environmental Basics
PWS Mindset Coping Skills
Table of Neuro Symptoms and Interventions 
Talking to Your Hyper-Reactive Child 
Picking and PWS
Primer for PWS 
Psychiatric ALERT 

While no one likes to think about our own mortality, it is unavoidable. It is highly advisable for parent of a child diagnosed with Prader-Willi syndrome to prepare ahead in order to ensure that your child is always well cared for.

A Will is a legal document that spells out how you want your affairs handled and assets distributed after you die. A Will does not avoid Probate Court which can be a timely and costly legal procedure.

A Living Trust is a bit more complicated but can provide greater benefits, especially depending upon your assets. A Living Trust offers greater control over when and how your assets are distributed and avoids probate court which often more than justifies the additional complexity of setting it up.

A Special Needs Trust, also called a Supplemental Needs Trust or a Third Party Funded Special Needs Trust, is the legal document that allows for a disabled person to maintain his or her eligibility for public assistance benefits such as Medi-Cal and Social Security benefits despite having assets that would otherwise make them ineligible for those benefits. Assets of $2,000 or more makes someone ineligible for public benefits. It is critical to work with an attorney who specializes in writing Special Needs Trusts to ensure your Trust is written properly and will protect your loved one’s ability to benefit from your assets after you are gone.

The State Bar of California maintains a Lawyer Referral Service, and PWCF maintains a list of attorneys who specialize in writing Special Needs Trusts, Living Trusts, and Wills. PWS mom and attorney Lisa Thornton shares a brochure to help families understand the importance of creating these critical protections.

Parents have the legal responsibility and right to make decisions for their minor children. Once a child becomes age 18 he or she is considered an adult in the eyes of the law, and decision-making responsibility transfers from the parent to the adult child, regardless of disability status.

Most persons with PWS are not able to make informed and appropriate decisions regarding their health and safety including medical care, self-care, living arrangements, and finances. Therefore PWCF strongly encourages you to pursue conservatorship so that you or someone you designate has the legal authority to help your loved with decisions that are in his or her best interest.

Conservatorship procedures differ from county to county within California. If you do not work with a conservatorship attorney, ask your Regional Center Case Coordinator to help you or check with your local Probate Court for your county’s conservatorship resources and forms.

To learn more, review the important resources below:

Bet Tzedek Self-Help Conservatorship Clinic
Conservatorship FAQs
Conservatorship Booklet for Lanterman Regional Center Families
California Courts Self-Help for Conservatorship
Facts About PWS That Conservatorship Attorneys Need to Know
Handbook for Conservators