Helping children with PWS navigate their school systems

A mother posted on Facebook recently that she’d let her son with Down syndrome choose between adapted and non-adapted activities in high school; it worked reasonably well, she said. We gave a similar choice to our son, who has Prader-Willi syndrome (PWS), 21 years ago.

We all want our children to excel and be perfect. But do we mainstream our children with PWS, or choose adapted classes where they receive special services? If we decide on adapted classes, the world knows our child’s condition. This decision and others are hard for many of us, but parental advocacy is still beneficial for our children.

Robert, our son, is now 36. In early childhood, he received speech, occupational, and physical therapy, which continued when he entered kindergarten; he simply left his mainstream class to work with a paraprofessional. The process worked well until he was in middle school.

That transition was a nightmare. Robert was a matchless manipulator. He’d tell his teacher and paraprofessional that “my mom likes doing my homework with me.” They started sending home all the work he didn’t finish in school. I complained to the teacher and then the school psychologist, who played my voicemail to Robert, saying, “See how upset your mother is?”

That made me furious! I reported it to the principal. The next day I had a meeting with the district director of special education, the psychologist, the principal, and a special education teacher. It was agreed that Robert would spend time in a resource room with other special needs children. He was given an adapted curriculum that he could manage.

Our advocacy is required

You must advocate for what’s best for your children, especially if their school system isn’t familiar with PWS. Sometimes that means you must educate the school staff. For instance, food is often everywhere in schools, and teachers sometimes use it as rewards — a troubling policy for children with PWS, who tend to eat insatiably. Schools also have birthday parties, another temptation for PWS kids. One blog I saw told how a student with PWS had memorized the birthdays of all the children in their class, just so they could be in the classroom those days to get a treat!

High school was our greatest challenge. Fortunately, the staff in “the Apartment,” which taught life skills, were skilled special education teachers. The Apartment, when Robert went to school, was a gathering place for children with special needs; they would stay there unless they were attending mainstream English, science, or math classes. Unfortunately, the Apartment was a great way for Robert to access food, and he gained a lot of weight.

Like the family of the Down syndrome student, we allowed him to access activities that drew his interest. Robert lettered in speech, for example; a friend included him in all the speech events. Through this and other activities, I felt he’d begun to catch up from his delays.

We may not have always made the best decisions for Robert, but information about the syndrome was limited 25 years ago. We now know that a person with PWS has a drive to eat to the point of self-injury, but we weren’t aware of that when he was in high school. Our decisions might’ve been different had we known. Inclusion is wonderful — if you can keep your child safe.

Resources and more

Prader-Willi Syndrome Association USA has written materials and films that can help with educational needs. Through LinkedIn, I recently connected with Destiny Pacha, Ed.D., who leads EmpowerED Solutions. She caters specifically to the educational needs of children with PWS and has spoken at a PWS Association conference.

Pacer Center in Minnesota is another educational resource. It has informational booklets and sends special needs educators into local schools. A friend who’s a special education teacher said schools are struggling to provide services for everyone, so parents “have to be loud!” She recommended Pacer to a parent of a special needs child, but the connection never happened and the child didn’t get the extra help he needed.

Almost all teachers in special education departments are buried in paperwork. Parents shouldn’t be belligerent or rude to get help, but they should be relentless if there’s a problem, continuing to push for whatever might work better.

Still, such pushing must begin with an educated opinion. Parents should gather information from reliable sources before confronting a school. They should also be aware that services can differ from state to state. Working with teachers, not against them, is the best plan.

Navigating the school system can be exhausting. A two-parent family could attend meetings practically all the time. One-parent families would be hard-pressed to cope alone. I found that asking for help from friends and family is a possible solution. But parenting children with PWS or other special needs is never easy.

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.