Several years ago our family became acquainted with Gillette Hospital. Our son Robert was born under stressful conditions at St Paul Children's Hospital. He spend two weeks in their Neo Natal Intensive Care. There was no diagnosis, for his inability to suck and low muscle tone. We saw several specialists at Children's, including Neurologists and Endocrinologists, none had a definitive diagnosis.  Robert, age three, began gaining weight at a rapid rate. At age five, we were told  he probably had Prader-Willi Syndrome.  According to research on the internet, people died of the syndrome at forty from complications of morbid obesity.

We heard about the Prader-Willi Syndrome clinic run by Gillette. I was sure a second opinion would give us the answers we were looking for. Something else was causing our son to gain weight and he did not have the syndrome.

 On our first visit we were directed to height and weight, then taken to a clinic room. Clinic Nurse Carolyn Jones explained their routine.  Dr M. Ainsli’e, an Endocrinologist, that ran the clinic, would see us first. Other specialists, a nutritionist and Phycologist would then consult. No other appointments would be necessary. Extraordinary news to a parent whose life had been spent organizing multiple appointments.

Our first visit with Dr. Ainslie was reassuring. He was a kind and caring man who included Robert in the conversation. We could learn to cope with the problems of today he assured us. I would depend on this advice. We would return to the clinic every three months, as Robert could be helped there.

A blood test confirmed Prader-Willi Syndrome at age seven. The support we received from the clinic helped us cope. Robert was given Growth Hormone injections, a new treatment for the syndrome. Growth Hormones helped him grow taller and gain more muscle mass, most people with PWS are quite small. 

 Robert developed scoliosis. Gillette was able to provide treatment. We began seeing Dr. Lonstein an orthopedic specialist. He recommended bracing, to delay surgery. The brace, manufactured at Gillette's Assisted Tecnology was vest-like in appearance, velcro straps in the back. Bracing delayed surgery for three years. A full spinal fusion surgery took place at age twelve. We were confident in our Doctor, but overwhelmed by the severity of the surgery. The severe curve was "S" shaped, ninety-seven degrees at the top, ninety-three degrees on the bottom. 

The surgery was hugly successful. Robert never complained of pain, people with the syndrome are often oblivious to it. He was convinced, after hearing that there were screws in his spine that they needed to be removed. He would repeat this whenever we visited, perseveration, repeating an idea or word is also part of the syndrome.

 Dr Ainslie, nutritionists, and an amazing phycologist Dr Constance McLoud helped keep us on track during the teen years The syndrome can become more difficult during puberty. At eighteen Robert became increasingly detached from reality and was hospitalized for mental illness. Gillette's clinic nurse Carolyn Jones was able to provide a resource. She suggested a group home called Stepping Out. Their program helped get him back on track.

Robert continued to be cared for at Gillette until his twenties.  I recommend the PWS clinic to anyone who has a child with the syndrome.  I don't know how we would have coped with this challenging syndrome without them.

Robert is now twenty-eight and engaged in life. His weight is low and he exercises daily. PWS clinic staff would be proud to see him speed walking and competing in 5K races. We still face challenges but as parent's we are no longer the "Bad Guys," day to day behaviors are handled by the staff at Stepping Out!

Group Home Living

Stepping Out Incorporated, our son’s group home hosted a birthday party to celebrate his twenty-ninth year.  The party consisted of dinner and dessert chosen by Robert. All the guests are members of the group home or staff. They all voiced their approval of the menu. I attend because it gives me a chance to see this loving community in action. I also bring Lacey, our dog, who is a popular guest.

Robert has lived with Stepping Out for ten years. He moved in after a month-long hospitalization for mental illness. His stay in a mental health unit was eye opening to say the least. During our visits we witnessed many people struggling with mental illness with no one to visit them. Mental illness is an isolating disease. Drug after drug was administered to our son in order to decrease his delusions, with no success.

Stepping Out came to our rescue, staging Robert’s first group home birthday party, and brokered a commitment from him, to move in, once released from the hospital. Ten years later with the help of medication, a reliable routine, and daily exercise, he leads a happy life.

Parent advocates get used to managing their children’s lives. Most dread the day when they will have to give up control. Their fears are based in reality, we have all heard stories of vulnerable adults being abused. Often, we feel we know what is best for our child, and that the group home setting will never match our high standard of care. Some of us feel guilty for the relief we feel, when we are freed from daily care of a challenging child.

Our son was involved with activities that included older Special Needs people. If their parents mentioned they lived in a group home, my stomach would clutch with fear and anxiety. “How could I face allowing others to care for my sweet little boy?” I would then project my ten, twelve, fourteen, or fifteen-year-old, living away from the family. That is how fear works, projecting the worst possible case scenario, pushing you away from the present.

We have no idea how we will handle tomorrows challenges.  Focusing on tomorrows concerns, steals todays energy. Enjoy your children now, it’s all too fleeting. The chatter of little voices will one day be something you crave to hear again, wishing that someone would ask you, “why don’t you think I am an angel?”  Influenced by a network show about angels, my little man was sure he was one too. “Because people are people and angels are angels,” I would impatiently answer. I spent so much time trying to be “right” instead of treasuring these moments.

Some of us forget that the challenges we face as Special Needs Parents are universal to all children. We want what is best for them and we want them to live productive lives. Stepping Out structures our son’s days so that now I can be the parent of a twenty-nine-year-old person, not the enforcer of dietary restrictions.

We are not perfect at “accepting the world as it is, not what we wish it was,” but we realize the group home works for our family. While I often feel sad saying goodbye, our son is happy going back to his routine. Life never gives you everything you want!


Winter is the best time for me to write. I can think of so many other things to do when it’s warm and inviting outside. The garden needs watering or weeding, my dog needs walking, wouldn’t a swim feel great, or it’s a good day to ride a bike or horse. I have many interests, as I’m sure many of you do. Our hobbies or passions can be a sanctuary when life becomes difficult.

Caregivers of Special Needs children need a sanctuary, a place they can just be. So many of the comments I read on social media are asking for help or advice. We are afraid a lot of the time. As a parent of an adult male with Prader-Willi Syndrome, I have experienced fear. It can consume all of your identity. You become focused on fixing the problems. You use business, or substances’ as a way to keep yourself from feeling.

 It’s ironic that this syndrome that mimics addiction, will cause codependency in parents’. This is not a judgement on my part, the last thing any of us need, is someone saying you need to do more or do it better.


At the recent Prader-Willi Syndrome National Convention, Greg Cherpes MD, spoke about mental health for parents. I admit I attended his talk because I had misread the description and thought it was about mental health for people that had the syndrome. I’m sure many of you are scanners, like me. It can get you to place you didn’t think you would go to.


Dr. Cherpes stated the two most common mental illnesses for parents of special needs children are depression and anxiety. You may think to yourself, of course I am depressed and anxious I have a special needs child. For many years I struggled with untreated depression. Many of us still think of depression as just being sad, but it is so much more. It can lead to withdrawal, self-criticism, indecision, memory trouble, and thoughts of suicide.

 As caregivers we also experience what Dr Cherpes referred to as Traumatic stress. We all think of that in relation to war or a violent incident, but those rageful meltdowns, picking behaviors, constant vigilance of food consumption, and sibling conflict can also trigger traumatic stress.

 The good news, help is available. Many mental health issues are now handled by a family doctor, the first step, an appointment. Medication can be lifesaving and help us cope. Meditation, Biofeedback, deep relaxing breaths, yoga, daily exercise, affectionate relationships, can all increase mental health.

 The “too busy” excuse may sound like you are an angel of mercy to your demanding family. “Too busy” to take the same care of yourself that you take of others? Don’t your loved ones deserve someone who can be fully present, engaged, and enjoying the one life they have been given?

 Our son has lived in a group home for ten years now. It still seems like I am on vacation. I no longer handle “meltdowns,” the staff at the group home manage those. A whole team now strategizes how to minimize them. I am just a Mom. I still have concerns and am involved in making sure my vulnerable adult gets good care.

 I have been a fulltime caregiver, and I can state with great certainty that looking after myself, taking time off, seeking help for mental health, saved my life. It certainly saved my family from enduring an exhausted, angry, passive aggressive, overwhelmed, parent. Give yourself permission take good care of yourself.

PWS MN. New Parent's Gathering

I recently attended a gathering for parents of newly diagnosed babies and children with Prader-Willi Syndrome.  We met in a community room at Amore Coffee in West St Paul. As a parent of an older person with PWS, my son is twenty -eight, I was educated in how things have changed, since the birth of our child. All I can say is Wow! These new parents are amazing, they are informed and engaged.

It was the first time I had heard of swallowing studies being done on newborns. It makes perfect sense as the tongue is also a muscle. It would be effected by low muscle tone. While doing research for my book, Raising Robert, I spoke to a doctor who specializes in swallowing at the Children's Institute of Pittsburg. We discussed how food is sometimes left in the esophagus of people with the syndrome. She suggested drinking water during and after every meal. One of the babies, I was happy to hold, is able to bottle feed easily now at 6 months.

Growth Hormone is now given soon after birth. This has had a huge impact I believe in people with the syndrome living healthier lives. They grow taller and are able to grow stronger muscles. This helps with metabolism and the ability to participate more fully in exercise programs. I have seen several people, with PWS, who had not been given Growth Hormone, achieve only about five feet in height for males, less for females. Some of the older children at the gathering are already taller than that.

The parent's I talked to are wisely trying to take life "one day at a time." They are enjoying  delightful babyhood days. Several families spoke of great family support. Two Grandmother's were in attendance. Both were Nurses, and had worked together for many years. We have a great network of supportive people in our PWS community. One of the parents had worked with a teacher of our son. People speak of "six degrees of separation," in St Paul it is only two!

Coping with this syndrome is not easy, but I was really encouraged to see how these new parents are finding the information and treatments to help their children. Medical advances are on the horizon. 

I will be traveling to Orlando Florida to the National PWS Conference. It's a very hard thing to do in November, when the days are short and dreary, but I am willing to sacrifice. There should be medical updates revealed at the conference that will be of interest to people reading this.


Dental Lifeline Network Minnesota

Recently we were told by our family Dentist that our son Robert, who is now 28, and has Prader-Willi Syndrome. would need possibly ten crowns on his back teeth.  Robert's teeth cleaning twice a year is covered by Medical Assistance, but dental restorations are generally not covered.  Medical Assistance would cover extracting the teeth, not a good soution. I spoke with our dentist about finding some sort of financial help, as we were looking at possibly twenty thousand dollars worth of dental work.  We live in a state that has a dental program at our state University. That would be one option, but with this amount of restorations, the appointments could be staggering.  Our Social Worker had no other suggestions, as well as our dentist.

I have worked many years as a caterer and remembered a member of our church and a client Jim Wiltz started Patterson Dental, a company that manufactures dental restorations.  I called to see if he had a suggestion.  Jim told me he had been involved with Dental Lifeline, a program that will pay for the dental work, that people with disabilities need done. He advised me to go online and fill out the application form.

Robert's application was accepted, and the program began looking for local dentist's that volunteer there time to help him.  When I spoke to my husband Carey about finding help for Robert I said " Aren't we so blessed that we have so many people in our life who will help us?"  Carey replied "I will tell you how we are blessed, having you to look for these kinds of programs for our son."  Of course that brought tears to my eyes, It's always nice to be appreciated!

Dental Lifeline was started over forty years ago in Colorado by Larry Coffee who is a dentist, and had  special needs sister.  Initially be began by educating people in the dental profession on how to better serve people with disabilities. Often their lack of motor skills and motor memory can hinder proper cleaning

The Dental Lifeline Network now treats people with disabilities, the elderly and the medically fragile.  They have served over 117,000 patients. The network has over 15,000 dentists and many laboratories, like Patterson Dental, who donate their services. Dental Lifeline relies on their volunteers, so services vary from state to state. Program coodinators screen and match patients.

To get started you need to fill out eligibility forms on line.  We were quickly informed that we qualified.  Robert had his first appointment with Dr. Kevin Anderson in Oakdale. Molds were made of his teeth and a treatment plan was created. Dr Anderson had us consult with an Orthodontist to see if Robert's teeth alignment were at fault for the erosion. Dr Admott, the orthodontist, took more impressions and suggested that braces might be an option. He also felt that Robert's saliva may be causing problems, as it is extremely viscus. The idea of braces did not seem practical for the amount of correction Robert needed. He does not have the best oral hygiene and forgoing sticky candy would never occur to him.

Our next visit was with Dr. Angela Rake DDS at Dakota Valley Dental who volunteered to remove Robert's four wisdom teeth. She would do this with local anesthesia, as some people with PWS can have problems with being put to sleep. This is what really impressed me with the program.  All the the people who are treating Robert are really informed about his medical issues. The syndrome is relatively rare and it's sometimes hard to get the best information.  Robert's teeth were extracted in record time. They were fully erupted and easily removed.  We will now move on to the restoration part of the care plan. Several crowns and restorations will need to be done, about eight teeth are involved.

Robert is a cooperative patient. It is hard to know how much pain he feels. He was never able to identify whether shoes were too small or if he was getting sunburned. Donated Dental has impacted his life in a very positive way. All of the services that he is receiving would have had to be paid for by our family. Until very recently Robert had only about fifty extra dollars a month spending money from his SSI check. He has a small Special Needs Trust that he uses for skiing and camp. Of course we would have paid for his dental work, but are extremely grateful that we don't have to. Teeth are so important to quality of life.

We want to say Thank You so much to all the people who have helped us at Dental Lifeline Network, \\http:\ They are doing great work for people who really need their help. Navigating the health care system can be a real challenge.  Our coordinator Catherine did all that work for us. As Robert's guardians /parents we face many hard decisions on how to manage this difficult syndrome. We are so grateful for the helping hands that keep us moving forward.