Top 5 Mistakes Parents of Children with Prader-Willi Syndrome Make

Although we try our best, we pretty quickly find out that we are not perfect parents.  On some days after we have set a clear daily plan, avoided over stimulation and used positive re-enforcement … and your child still has a meltdown, we feel like we would settle for just being an average parent.  Well […]

Although we try our best, we pretty quickly find out that we are not perfect parents.  On some days after we have set a clear daily plan, avoided over stimulation and used positive re-enforcement … and your child still has a meltdown, we feel like we would settle for just being an average parent.  Well if the bad news is we are not perfect parents, the good news is we are not alone.  In the spirit of celebrating our ‘learning experiences’, I thought I would collect a list of the top 5 most common mistakes we make as parents of children with PWS.  I know I’ve made each of these mistakes before, and will probably make them again, so here’s a friendly reminder of what to avoid.

Mistake # 5 – Making Comparisons

Here’s is my confession.  When Dante was 1 year old, I was at the book store with him and was asked by a couple with a young baby how old Dante was.   I quickly looked at their baby, gauged he was about 9 months old and answered “Dante’s 6 months old” … D’Oh!  I had already done the comparison, knew Dante probably wasn’t achieving the same milestones as the 9 month olds and didn’t want to get into the whole explanation of PWS.  Now this is one form of comparison, but their are a lot of different types.  Comparing to typically developed children.  Comparing to other children with PWS.  Comparing to our children without PWS.  We know everybody is different … regardless of whether they have PWS or not.  We know we should (and usually do) celebrate our children for who they are and what they accomplish.  We know these things and most of the times we act accordingly … but every now and then we make that comparison.   Either to make ourselves feel better or make ourselves feel worse (whichever we are looking for) … and that’s okay.  Next time, as you catch yourself making a comparison, simply think of Homer Simpson, laugh and move on with your day.


Mistake # 4 – Expectations

This is a tricky one.  Before Dante was born I remember thinking that I didn’t really have any expectations for my child.  If he wanted to be a doctor, musician or librarian, it didn’t matter as long as he was doing what he loved.  Of course when Dante was born I had to come to terms with the fact that I had expected to have a typically developed child.  Here is the tricky part about expectations.  Expectations that are too high can be damaging as we push our children to achieve something that is unrealistic.  Expectations that are too low could be even more damaging as we don’t encourage our children to grow.  To complicate matters each child has their own individual strengths and weaknesses and they develop at different rates.  It makes it pretty much impossible to have the ‘right’ level of expectations and not damage our children.  Frustrating.  So what’s do we do?  Don’t play the expectation game.  Accept our children for who they are and fiercely encourage them to achieve their full potential, but don’t put OUR expectations on them.   Once again when you catch yourself battling with expectations, think of homer, laugh and get back to living.


Mistake # 3 – Too Much Focus on the Child with PWS

As a parent we work to help our children as much as we can.  As I have talked about before, it can be difficult to be a sibling of someone with PWS.  When one of our children has PWS and needs help on a number of different (and obvious) ways (e.g., appointments, shots, …), it can be easy to pay less attention to the child without PWS.  We all know the child without PWS doesn’t need any less help or attention, it just isn’t as obvious as a child having a meltdown because the bus came at a different time.  I don’t think we ever consciously do this, but when you realize that simply taking your child with PWS to 75 appointments a year is giving them extra attention.  If you want some suggestions you can checkout my earlier post here.


Mistake # 2 – Take Control Away From our Children

It’s 6:15 pm and I have just rushed home from work.  Dante has finally got into his Taekwondo outfit and we are rushing to get out the door for his 6:30 class.  I’ve had a crazy day at work, eating my dinner in 5 minutes and guiding Dante out the door.  All of a sudden, Dante says he doesn’t want to be late so he’s not going anywhere.  I take a big breath and try to explain that the best way to make it to class on time is to leave right now.  Dante doesn’t buy it.  I see his emotion building, he looks at me and says, ” I don’t want to be late!”.  I consider myself a fairly patient person, but it was one of those days and I was just about to “Take Over” the situation.  I could almost hear myself, “Dante, we are going to class, NOW.  Get in the Car!”.  We had a schedule to make, I had rushed home, I had ate lunch in 5 min. … I wasn’t going to be late for this class.  You see we’re parents and we know best.  Of course, if you look at it another way, it really wasn’t about me at all.

I ended up taking another big breath and simply saying, “If we stay here we will be late or miss the class.  If you choose to go to the car, we can go to Taekwondo.  It’s your choice”.  Next I sat down on the stairs and waited.  About 1 minute later, Dante said “I need to think about this”.  I waited.  And waited.  About 2 minutes later (although it felt like an hour), Dante said, “I want to go to Taekwondo.  Hurry up Daddy”, and he ran to the car.  Now Dante doesn’t always make the best choices … but then neither do I.


Mistake # 1 – Not Taking Time for Yourself

If you travel a lot you have heard every flight attendant say “Put on your oxygen mask before you help your child with theirs”.  It can seem selfish at first, but its been proven to be the most effective safety procedure … and it works for all of us dealing with PWS.  It is very easy to get caught up in the day-to-day … running to doctor appointments, going to therapy,  ‘educating’ our children’s teachers and everything else we do for our children.  It is also very easy to forget about all of those little things like exercising, reading a good book, going on a date, going after our own dreams.  So lets put it together.

Don’t be a Homer Simpson.  Make sure “You do, what you need to do, for YOU!”  It’s not selfish.  It is actually the BEST THING you can do for your child.

I’ll see you at the gym tomorrow!

p.s. If you have made it to the end of the post … you need to read one of my favourite poems about special needs parents

Topics: Announcements

Keegan Johnson