Advocating for your child with Prader-Willi syndrome is a lifelong endeavor
I still advocate for my adult son, but it's gotten easier over time
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When our son, Robert, was born in 1989, we never dreamed we would still be advocating for him at age 37. I was sure I could fix whatever problems he had. I thought he would eventually have a normal life.
Low muscle tone was a problem from the start. At birth, he was referred to as a floppy baby. We had no diagnosis, but a neurologist suggested Prader-Willi syndrome (PWS). Several areas of his body were affected, and he was unable to suck enough milk to sustain life. Thankfully, we were able to avoid tube-feeding, and after a two-week hospitalization, we started bottle-feeding him.
This gave me false hope that we could overcome anything if we tried hard enough. My main coping mechanism became denial; if I didn’t want it to be true, it wasn’t. At age 7, Robert was diagnosed with PWS at Gillette Children’s hospital in St. Paul, Minnesota. I had to let go of some, but not all, of my denial.
As Robert got older, advocacy became my part-time job. His school held semiannual meetings to discuss our goals, and we had appointments at Gillette Children’s every three months. These appointments became more frequent after Robert’s scoliosis was diagnosed.
Caregivers expend considerable energy managing a child’s health issues. We had two children, and Robert’s sibling never received as much attention as our neediest child. The balancing act parents must perform is exhausting.
Fortunately, we lived in Dakota County, Minnesota, where services were exceptional. I asked the professionals we encountered about available services, most of which are free, and we accessed them for our son with the help of a social worker.
We signed up for a waiver program through Minnesota Medical Assistance that provided us with financial aid every six months. We used it to pay our insurance deductible after Robert’s endocrinologists recommended growth hormones.
When Robert had severe dental problems in his late 20s, our family dentist estimated the repairs would cost $10,000. Many people with PWS have dental problems due to the consistency of their saliva, but Medicaid would cover only the extraction of Robert’s teeth.
I spoke to a man who owned a dental manufacturing business, and he suggested Dental Lifeline Network, a national program that helps adults with disabilities access free dental care in their area. After filling out some forms, our son had his teeth fixed for free!
It can be hard to let go
When Robert became mentally ill and was placed in a hospital, and then in a group home called Stepping Out, my life changed drastically. Initially, I slept a lot and felt like I was on a vacation from meetings. I had micromanaged my son’s care for so many years that it was hard to let go, but the group home now handles all his day-to-day care.
Group homes are not always available to people with the syndrome. Most have waiting lists, and some states don’t have any homes specifically for people with PWS. When available, though, these homes are a good option for adults with Prader-Willi. None of us lives forever, so it’s helpful to have people besides parents who can advocate for the person with PWS.
Advocacy for people with PWS does continue through adulthood. I meet once a year with the professionals who provide Robert’s care. About eight people generally attend, and Robert answers most of the questions.
He is happy to be the center of attention and advocates for himself. This year, he requested a reduction in the dosage of one of his psychiatric medications and asked for more time to complete workouts.
Email is a great communication tool because updates can be sent to all members of the care team. This is particularly important in crisis situations or when planning home visits.
I share this journey not to praise my own virtues but because I understand the dilemmas other parents face. Young parents of children with PWS have complex, demanding lives. It’s important to know it can get easier in adulthood.
Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
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