Once you child is a few years old these can be the trickiest questions on a parent’s mind.  If I tell them too early, will  they let PWS define them?  If I tell them too late, will they get frustrated with some of their challenges … will they hear about it from someone else?  PWS is pretty complicated, how do I explain it to my child?  How do I tell my other children?

Below is how we told our son, Dante.  It was pretty simple and worked out pretty well.  There are a ton of ways to manage this effectively and I’d love to hear what worked for you so please comment on this post.  Here’s our story …

We started early.  From the beginning we have had numerous discussions with Dante (7 with PWS) and Denzel (5) about the fact that everybody is different.  Daddy shaves, mommy wears make-up, Denzel likes soccer and Dante likes boxing.  We never highlighted one option as better than the others, we just consistently highlighted the fact that everybody is different.  Simple.

We didn’t pick a specific time to tell the boys, we just went about our lives and waited for an opportunity.  One day we were at home in our living room and Denzel complained about taking his inhaler.  The time had arrived.  Here’s how the conversation went:

Daddy – “Denzel, do you know why you take your inhaler?”

Denzel – “No”

Daddy – “You take your inhaler because you have Asthma and it helps you breath.  Remember Everybody is Different.”

Daddy – “Dante, do you know why you take your needle?”

Dante – “No”

Mommy – “You take your needle because you have Prader-Willi Syndrome and it helps you get strong.  Remember Everybody is Different”

Denzel – “Mommy, what do you have?”

Mommy – “I have Carpal Tunnel Syndrome”

Dante – “Daddy what do you have?

Daddy – “I have Tendinitis.  Remember Everybody is Different.”

Daddy – “Do you guys know anyone else who has Asthma?”

Dante/Denzel – “No”

Daddy – “Your uncle has asthma.”

Mommy – “Do you know anyone else who has Prader-Willi Syndrome?”

Denzel – “Yes! Jenna, Chloe and Kloe”

And that was that.  Pretty simple looking back, and nothing to worry about.  The key for us was starting early and using consistent terminology.  Now Dante and Denzel understand that Dante has PWS, but it really isn’t a big deal because Everybody is Different.

• Obesity in children rises from 6.5% to 20% in last 30 years
• Nine US states have obesity rates over 30%
• An unbelievable, 64% of adults over 20 are considered overweight or obese

The situation looks pretty grim.  So how do we reverse this trend?  Can Microsoft’s Kinect for XBox be the secret weapon?

Let me explain.

1. My 6 and 3/4 year old son, Dante (pictured above), has Prader-Willi Syndrome
2. Dante loves the Kinect

Still not clear.  Let me explain further.  We know there are a number of causes of obesity, which can broadly be categorized into behaviour or genetics.  Prader-Willi Syndrome, which my son has, is the most common genetic cause of Obesity.  What this means is his body doesn’t register being full properly.  Left unmanaged people with Prader-Willi Syndrome (PWS) would literally eat themselves to death.  In addition, people with PWS have low muscle tone, which makes exercising more difficult … as if  it wasn’t hard enough.  Basically, when it comes to obesity, the odds are stacked against Dante.

But here’s the main point.  Dante loves the Kinect.  I know I already mentioned that, but I want to make sure you understand.  If you haven’t seen it yet, the Kinect is a gaming system that is controlled by a video camera that tracks your body movements.  You don’t need a controlled in your hands … as they say in the commercials … you are the controller.  What this allows is people to get more engaged with the games and actually requires physical movement (e.g., exercise) in order to play the game.  My son comes home from school and does boxing, dancing or sports on the Kinect for over an hour … everyday.  He finishes sweating just as if he had completed a one hour cardio workout.

Still not convinced.  Let’s take a look at the math:

Let’s assume Dante burns 100 calories per hour of exercise on the Kinect.  Let’s also assume he uses the Kinect 350 days in the year.   Considering each pound represents about 3500 calories this means Dante will burn about 10 pounds per year simply playing the Kinect! (100 * 350 / 3500)

Now consider Microsoft has sold over 10,000,000 Kinects.  This means that every year the Kinect will contribute to people losing an amazing 100M pounds (10M * 10 pounds).

Finally if we consider there are 25M overweight children in the US (75 M children * 33% overweight rate), that means that the Kinect could help all overweight children in the US lose 4 pounds per year! (100M pounds / 25 M overweight children)

Okay, I know the analysis above is a little contrived, but it illustrates the point.  If your child has problems with weight or has PWS I recommend getting a Kinect.

If you are still not sure, checkout Dante winning the hurdles on the Kinect!

[For disclosure, I do not own Microsoft stock ]

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.

• We know that parents of children with PWS have more than twice as much stress as the average person,
• We also know that stress can cause serious health concerns such as heart attacks, kidney disease and cancer, and
• What good are we going to be to our children if we are not at our best.

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

In case you didn’t know we recently celebrated Denzel Day (pictured on the left).  Denzel Day is not his birthday, but simply a day to celebrate Denzel.  Dante (our son with PWS), gets a lot of attention at our Scotiabank One SMALL Step Walkathon (http://onesmallstep.fpwr.org).  As parents of a special needs child we also worry about our son Denzel (without PWS) getting enough attention, which led to the creation of Denzel Day.  Every year, Denzel picks the activity for the day and we head off as a family.  We went to a water park this year and both Dante and Denzel had a blast.

For us its a good reminder that having a sibling with special needs can be stressful.  A few common issues for siblings can be:

- Setting abnormally high expectations on themselves to ‘compensate’ for their sibling with special needs

- Feeling like they need to ‘parent’ or take care of their sibling, even though they are young children themselves

- Feeling a lack of one-on-one time with their parents

- Being resentful of having to explain, support, and/or take care of their brother/sister

- Feeling embarrassed about their siblings differences and them ashamed about feeling embarrassed

It is also important to remember that siblings will end up having the longest relationship with each other, and not with their parents.  For more information on the challenges of siblings you can take a look here or here

For me, what I have observed is that our PWS siblings are some of the most kind, patient and compassionate children I have ever seen.  Denzel routinely makes accommodations in games he plays with Dante to ensure everyone has fun.  He also uses these skills with his friends in different social environments.  What may be the most important part is to make sure our typically developed children live their own lives.  I can tell you Denzel loves soccer, super heros and math.  Really.  He is just as likely to ask you who is stronger Hulk or Superman, as to ask you what Infinity minus Infinity equals

As a proud father I could go on and on, but I guess all I wanted to say was … Happy Denzel Day!

Montreal Garage Sale for PWS Flyer

Dr. Andrea Haqq is recruiting children with PWS 5-17 years of age for three research studies in Alberta.

For more information about these studies contact Dr. Haqq’s research coordinator

Michelle Mackenzie at 780‐407‐7241 or michelle.mackenzie@ualberta.ca

Did you know that mothers of children with Prader-Willi Syndrome have up to twice as much stress when compared with parents of other developmentally disabled children?  In addition, parents with disabled children already report a 10% higher number of stressors then the average parent.  Not to mention a recent American Psychological Association poll that found that one-third (32%) of parents in general report that their stress levels are extreme!

Wow.

Needless to say, being a mother of a child with Prader-Willi Syndrome can be difficult.  You would think that with all of that pressure, PWS moms would just give up and stay in bed all day.

But PWS moms are different.

I have met countless PWS moms from around the world.  I have talked to moms right after they got the diagnosis of Prader-Willi Syndrome and moms that have been watching their children 24/7 for 30 years to make sure they don’t steal food.  What I have seen is nothing short of amazing.

In this picture alone, these extraordinary women are mom’s that are overcoming personal challenges, while raising children with special needs and choosing to believe by:

• fighting MS and raising her daughter with PWS from a wheelchair
• starting and running the gala for 5 years
• flying in from Alberta, BC, Quebec, NB to our national conference to learn new tips to help their children
• working with multiple PWS organizations to provide the support our families need
• working full time jobs and joining a committee to make a real difference in our community
• attending PWS events and fundraising for any organization to eliminate the challenges
• planning, attending and expanding galas and walkathons to cities and countries all over the world
• organizing golf tournaments , poker tournaments and spaghetti dinners to raise money for research
• sharing their energy and passion with newly diagnosed families…..just because, they want to help…..just because, they remember how it felt to get the diagnosis and what they have over overcome

My personal theory is that adversity makes us stronger.  The challenges that these PWS moms have faced, have allowed them to cut through the BS we all face everyday.  Dealing with PWS, has allowed them to get to the core of the matter … we’re all imperfect, we all love our children, we all want to do everything we can to help our children.  No matter how big.  No matter how small.

If you are feeling stressed, here’s a few thoughts:

• Don’t worry - It’s natural and you are in good company.  All of the moms I’ve talked about will tell you they feel stressed.  They will also say they have had their share of days where they did simply stay in bed.
• Talk to other PWS Moms – I’ve heard over and over, how relaxing it can be to simply talk with other PWS moms who “get it”.  Find someone in your area, talk to PWS parents online, or join the mothers pictured above for a night out at our 5Th Annual FPWR Canada Gala
• Find what works for you  - Everybody manages stress differently.  Take a look at what others are doing , try this stress calculator or checkout 10 Ways to Take Time Out for Yourself.  The key is to take the first small step and do something to get momentum.
• Do what you can – You don’t need to solve world hunger or cure PWS by yourself.  Maybe today, all you can do is go for a walk … and that’s okay.

“It is the greatest of all mistakes to do nothing because you can only do a little – do what you can.”

- Sydney Smith

Hans Reiche of Calgary, beloved husband, father, grandfather and great-grandfather, passed away on Monday, February 21, 2011 at the age of 91 years. Greta (7 years), one of his great-grandchildren, has Prader-Willi Syndrome. She and “Opi”, as he was called, had a special relationship and she misses him dearly. Opi supported Greta in many ways, including donating to PWS research. We would like to express our sincere gratitude for donations made in his memory to the Foundation for Prader Willi Research Canada (FPWR). To support FPWR Canada, you can:

2. Mail your cheque to:

FPWR Canada

19-13085 Yonge Street

Suite #370

Richmond Hill, ON

L4E 0K2

Born and raised in Wollin, Pommern, Germany, Hans began his apprenticeship as a cabinet maker at age 15. His career was interrupted by the war, a period in which he endured a great deal of hardship and loss. After the war he moved to Linkenheim where he met and married Margaret Nagel. In 1956 they immigrated to Canada, and settled in Calgary, where Hans established his reputation as an excellent cabinet maker and finisher, one of the best there was.

After Margaret’s passing in 1969, Hans met and married Helene (Leni). They enjoyed travels to Germany and Mexico, and many social occasions and family gatherings at their home. Hans greatly enjoyed his time as a long-term member of the German-Canadian Male Chorus, and together they sang in the Singemeinschaft with their many friends. Hans loved music, and could be heard singing or whistling right up until his passing. Always positive and happy, he was an excellent role model for us all. We will remember him always.

Top 10 Myths about Prader Willi Syndrome

Prader Willi Syndrome (PWS) can be difficult to understand.  It is also easy to take general information and assume that it applies to all people with PWS.  From personal experience I can tell you that people with Prader-Willi Syndrome have as many beautiful variations as everyone else.  I can also tell you that you can’t believe everything you read about PWS.  Below are the top 10 Myths about Prader Willi Syndrome.  Let me know if you have any you would like to add.

10.  Your life is over when your child is diagnosed with Prader Willi Syndrome.

This is the first thought of many families diagnosed with Prader Willi Syndrome.  Obviously, it isn’t true, however believing this can be difficult.   You’ve just got the initial diagnosis, you’ve read a ton of PWS challenges on the internet and it feels like you will never be able to see your child succeed.  Trust me … you will.  You might not believe it now, but here’s the evidence that our child can:

• Learn to ski like William Compere - http://www.youtube.com/user/renaycompere#p/f/6/f1Y_2-tMV_Q and
• Learn to sing like Ryan Kendall - http://www.youtube.com/watch?v=pVvomajIU20&feature=related
• Learn to swim or dance like Lindsay Baker – http://www.youtube.com/watch?v=cM0vh6VH47E&feature=fvsr
• Run 5km like 8 year old Jenna – http://www.fpwr.ca/2010/announcements/prader-willi-syndrome-does-not-stop-8-year-old-from-running-5km/

9.  People with Prader Willi Syndrome cannot go to college.

You haven’t heard of Derek Montecalvo.   Derek graduated high school with a 3.25 GPA  and is now studying science at the Community College of Rhode Island.  Go Derek. http://www.fpwr.org/family-story/male/derek-montcalv

8.  People with Prader-Willi Syndrome cannot participate in sports.

People with PWS have participated in sports from running to baseball to bowling.   One of the best examples is 16 year old Meagan Mitchie who swam her way to the Special Olympics http://www.canada.com/ottawacitizen/news/city/story.html?id=6911f40a-d883-4fdf-aa4c-ace321c1e93f

7.  Children with Prader-Willi Syndrome cannot participate in Halloween.

Figuring out how to participate in Halloween can be a challenge.  Will my child want to eat all of the candy?  Should we give out food for treats?  These are good questions, but rest assured you just need to figure out what works for your family.  Great solutions range from having your child dress up and hand out healthy or non-food treats to simply setting a rule that your child can only eat 2 candies and the rest goes to a children’s hospital.  If you’re still not sure, you can take it up with the Hulk.

6.  Height is the only benefit of Growth Hormone and it doesn’t benefit adults.

There have been a number of studies of the effects of GH on people with PWS.  For a quick reference, take a look at one of the leading PWS researchers, Endocrinologist, Dr. Jennifer Miller –  http://www.youtube.com/watch?v=JsVdh1bn6NU.  For additional information, watch this video http://www.youtube.com/watch?v=wTayrEj5900&playnext=1&list=PLA0AC8910ECAA5E79

5.  People with Prader-Willi Syndrome cannot live independently.

Although not currently common, Victoria Parker with the help of her mother have worked hard to setup an independent living arrangement.   http://www.fpwr.ca/victoria-parker/

4.  People with Prader-Willi Syndrome are not articulate.

You obviously haven’t heard of Jacob Yashinsky.  Take a look as Jacob recites an original poem he wrote and delivered entitled, “Me Without You”.

3.  It’s hard work and no fun to raise money for Prader-Willi Syndrome.

Tell that to the 10 families that ran One SMALL Step walkathons and raised over $200,000.  You can take a look at what they accomplished and how the PWS Community world-wide is coming together here: http://www.youtube.com/user/fpwrcanada#p/u/1/5VJZyZBRAco

2.  There is no research on Prader-Willi Syndrome.

Not even close.  The Foundation for Prader-Will Research has spent over $1.6 million on PWS research, not to mention the millions spent by the NIH and PWSA(USA).  Now the entire PWS community has come together and developed a Research Plan led by 65 of the top scientists in the world.

Still not sure, watch the research videos at http://www.fpwr.ca/media-gallery/videos/ or go to Prader-Willi Syndrome Research.

1.  People with Prader-Willi Syndrome are always hungry and there is no cure.

Sadly, this one is still true for now … but we’re working on it.  Families from 38 cities in 7 countries are taking One SMALL Step to eliminate the challenges of Prader-Willi Syndrome.  You can get involved here.

And if you are still not sure … take a look at one of the all time favourite Prader-Willi Syndrome videos … Make It Go Away