SEPTEMBER 24, 2019

Tips for Homeschooling with Prader-Willi Syndrome


Special Needs Homeschooling

Have you ever heard of the term “accidental homeschooler”? Well, that was our family. Before kids, I did have dreams of homeschooling but when I was blessed through foster care with a baby with Prader-Willi Syndrome I figured that homeschooling would not be a possibility. Not long after our son came to live with us I received another surprise, I became pregnant with our second child, a beautiful baby girl. My days of parenting began with a whole lot of doctor appointments and therapy appointments for my son who was very medically fragile. We were constantly on the road.

What exactly is Prader-Willi syndrome?

  • Infants begin life with “failure to thrive” which in my son’s case involved a feeding tube and apnea monitor
  • PWS is a complex genetic disorder that affects appetite, growth, metabolism, cognitive function and behavior
  • It is caused by a deletion or partial deletion of chromosome 15.
  • In a strange twist, the “failure to thrive” eventually changes and the person has an insatiable appetite.
  • Sometimes autism can be part of the symptoms, which was my son’s case.

Once our son was healthy enough he was able to attend a special needs preschool through the public school system. While there he was able to get all of the various therapies he needed; speech therapy, occupational therapy, and physical therapy.  He had a wonderfully patient teacher who was able to keep up with him. Of course there were mishaps like losing out on riding on the bus for a while but for the most part, it was a really good experience. 

Then it was time for him to go to kindergarten but the special education classroom he was placed in wasn’t appropriate for his needs. To put it lightly, he was too much of a handful for the classroom and needed more supervision and one on one instruction. Next, he was moved to a different school to a behavioral special needs classroom which was an absolute nightmare. It was not an appropriate special education placement for him, he was not treated well, and a few times a week I was asked to come get him before school was out. Finally, I had enough and told them to get all of his things ready because he was coming home for good. 

I would be lying if I said it was smooth sailing after but honestly having him home was a lot easier in many ways. I was able to address his special needs through homeschooling and with help from his pediatricians and specialists, we were able to find some medications to help him with behavioral challenges. (he also has extreme ADHD) Have you ever heard of “deschooling?” Simply put by Wikipedia, it is the shift from a traditional, government-influenced institution of schooling to a less-restricted method of learning that focuses on being educated by one’s natural curiosities. This is what we had to do for a couple of months because he was frustrated and defiant with all things school after his kindergarten experience. Initially, we spent a lot of time playing, going on nature walks, swimming, singing, and watching some fun educational shows this was perfect for his ADHD and bringing back his interest in learning. During this initial time, his sister went to a church preschool a few days a week but joined us in the fall as we opened up our homeschool. 

Just like most homeschool families I tried different homeschooling methods and styles until I figured out what worked best for us, I even tried “school at home”, but we settled on an eclectic style of homeschooling. Early on I discovered that my son (and my daughter) learned best with hands-on activities. I remember learning numbers and letters with a game where we used textured foam letters in a box that they had to identify before they took them out. This worked well with learning sounds too.

We used a variety of online curriculum including Time4Learning, Science4us, and SpellingCity. We read lots and lots of books and included literature in a lot of what we did.  Reading did not come easy for my son and it was a lot of three steps forward and two steps back. He loved listening to stories but as far as reading instruction, sometimes I had to step back for a while and approach it at a different time and in a different way to help with frustration. Math was very much the same way.

What about socialization for children with Prader-Willi Syndrome?

I honestly think he had better socialization as a homeschooler. I do not think he would have done well in a special education classroom with other kids with special needs as he copied a lot of behavior, including bad behavior. Of course, he did pick up on things (good and bad) with the homeschool friends he was around but I was able to address it because I was there. 

He was able to participate in many things that he might not otherwise have been able to if he was in public school. We were active in 4H for many years and also had lots of activities such as geography club and drama with our homeschool group. For the most part kids and parents were very accepting and loving towards him. 

Advice for parents homeschooling their child with Prader-Willi Syndrome 

Educate those around you about the syndrome. More often than not people want to know how they can help when you are in a group situation. Of course, like life in general, food is so much a part of so many events. We did try to educate those around us about PWS and that only mom or dad could give him food especially since he also has a peanut allergy and cannot have red40.  Let people know what is ok and what is not.

Go at your child’s pace, not the pace you think they should be at. This isn’t always easy but in the long run, it makes sense. 

Sometimes it is ok to be in “unschool” mode. Trust me, they are still always learning.

When a crisis happens, and those of us with kids who have PWS know they do, make sure as a parent not to isolate yourself. It is easy to try and hide from the world. Reach out to people who care. Find other parents to talk to that know what you are going through even if they do not homeschool. 

Find support. Most states have resources for children with special needs but often you have to dig around to find them. Look into special needs sports. This is something my son enjoys immensely and we can usually find something all year round.

Life skills are just as important as academic skills. Homeschooling is the perfect environment to teach your child to be as independent as they are capable of. There are some wonderful books to help with teaching your child with special needs skills that they will need as an adult.

Siblings. There are many moments that PWS is difficult for the person who has it, the parents, but oftentimes even more so for a sibling. Make sure they get a lot of one on one time with a parent and if at all possible during times of crisis that they are able to have a break. Whether it is time with their friends or doing a separate activity. Sibling relationships are so important. Do your best to provide the sibling support when needed. 

Keep dreaming for your child with Prader-Willi Syndrome

We are now in our final year of homeschooling. It is a challenging syndrome but my son has exceeded all expectations that have been placed on him by so-called special needs “experts”. My son requires constant supervision but just recently was able to learn how to drive a fork-lift and go through safety training for using it. He also loves to mow our yard on the driving mower. Your child will surprise you!

Our first fall homeschooling I remember going to a support group for parents homeschooling children with special needs. I remember the mom running it, who has a daughter with Down Syndrome, saying how very important it is for your child to have a happy childhood filled with wonderful memories. I think that is key. You want your child to learn all they are capable of but filling their time with fun learning activities, happy memories, and quality relationships with friends and family…that is priceless. 

 

Joy CappsJoy Capps – Volunteer Contributor

Joy Capps is a homeschool bookworm residing in the mountains of western North Carolina. The only one who loves books more is her 15-year-old daughter. They both enjoy perusing old bookstores for treasures and sniffing books. Her son who is 17 has special needs, is the social butterfly of the family and has never met a stranger. Although she is originally from South Dakota she now calls North Carolina her home and she and her family love exploring the great outdoors. Her family has been homeschooling since 2005.