Prader-Willi syndrome: Life Expectations.

New parents of babies with Prader-Willi syndrome will be told that their newborn will experience “delays.” It is an all-encompassing term that means your child will not reach the milestones that a typical baby achieves at a general age. Their parents will want to know “what age will their child sit up, crawl, or walk?” Often, there are no answers.

The term “delay’ as I see it, is cruel. It offers the hope that the child will “catch up.” Most children will make significant progress but will be held back by the syndrome's effects. It wasn’t until High School that I realized that some “delays” would be permanent. The hope I had held for many years that independent living was possible died. This was a hard time for me. Working through this was helped by counseling and upping the dose of antidepressants.

People with the syndrome may achieve real athleticism. Some can manage adapted college courses. This is helped by early Growth Hormone treatment, a controlled diet, physical therapy, and engaged parents.

Following High School, Minnesota offers further education for people with Special Needs people. A program at Dakota County Technical College has several adapted programs. Robert was quite reluctant to go there. He wanted to attend college. Meltdowns each morning were a regular occurrence. Our home life became chaotic.

Robert was becoming increasingly mentally ill. This is not rare for people with the syndrome. By Christmas, he was hospitalized in a mental health unit. Some of you may know Stepping Out Group Home agreed to house him. His mental illness would continue for five years. During this time, he attended school but was so over-medicated that nothing much was achieved.

Generally, people with Prader-Willi syndrome spend their adult days after high school graduation in day programs. These places supervise large groups of people during the day and provide programming to stimulate them. There are several in Minnesota where we live that accommodate different disabilities. Some of them are called Proact Rise and Living Well.

For many years, day programs would have consumers work on piecework. They would sort metal screws and washers or put cards into plastic sleeves. One task was to roll newspapers into a tight roll that held vases upright for floral deliveries. Fascinating work, right?

 This changed when our state decided it wanted consumers to have jobs in the community. This is undoubtedly a good idea on paper, but most people with disabilities must be trained to work and to seek work. They need someone to guide them and keep them on task when they do gain employment.

 Our son initially waited 10 years for a job. His social worker would write that as a goal in our annual meetings, but this was never accomplished. A new social worker acquired Robert as a client. Her problem-solving skills landed Robert a job immediately.

His first position was at the YMCA cleaning machines. All staff get free membership, so this was an excellent opportunity. It lasted about 16 months until COVID ended the job. The YMCA closed. After the lockdown, the organization cut funding, and his job was terminated.

The state now has a system in place that helps people with disabilities work with companies to find appropriate employment. Companion Link is an organization that coach’s people with disabilities for employment.

His coach soon found employment in the Salvation Army. His job involved sorting and shelving shoes. Rob enjoyed the work, but after a year, the Salvation Army let him go due to budget cuts.

Finding a job for people with Prader-Willi syndrome is difficult. Being around food causes anxiety. That eliminates working in fast food, grocery stores, and stores like Target or Walmart.   

Two years of job interviews and searching were futile. Companies they checked out were Amazon, UPS, TJ Max, Burlington Coat, and several churches.

 LIFT services have recently been funded for people unable to use public transportation. Rob trained to use this service and now has a way to travel to a job safely. This opened new locations for job searches.

Attending a board meeting for our family church one night, I thought, “Why not have Robert apply here? He has applied to other churches.” Three weeks later, he was hired to help clean the Sanctuary! He is over the moon happy, as we all are. The church is a lovely, uplifting environment. He will occasionally see church members he grew up knowing. Naturally, he will remember their names as he never forgets a name. It is his superpower!