Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Sunday, June 17, 2012

Blueberry Pie for Father's Day?

In keeping with the Peter's family motto of embracing quirkiness, I asked Pete what he wanted for Father's Day.

In typical Pete fashion.......

His simple request? A vacation in the Bahamas, a luxury sports car......a new set of golf clubs perhaps?

Nope, the easy-to-please Pete requested...

Blueberry pie!

That's it...nothing else!


These types of special events that feature sugary treats are always difficult for families who have a child diagnosed with Prader Willi Syndrome.

When Nicholas was first diagnosed with PWS, Pete and I decided that Nicholas should always be entitled to share in the consumption of these special desserts. We believe it is important for Nicholas to share in all family celebrations. We do not want to emphasis his differences. We do not want him to feel deprived. We want him to enjoy the special bonding that takes place when families share their meals together. 

But of course, we do not want to jeopardize his health and the hard work we do every day to maintain his healthy weight. To make up for the increase in calories. we cut back on his meals for the rest of the day, so it is not noticeable to him. So far, this approach has worked very well for our family.

Nicholas is 10 years old and still not foraging for food. He has trouble waiting for lunch and dinner and will often ask me if it is time yet. But so far, it is still manageable for us. We do lock our pantry. We try to keep all of our food in this one single location. We find this helps to remove any kind of temptation for Nicholas. We do not lock our refrigerator yet. But we are ready to do it when the time arises.

I am very thankful to have such a supportive husband to share in the raising of our complex children. Pete is my best friend. He is funny, clever, hard working, handsome and very humble. We are very fortunate that our challenging family situation has brought us very close together. And even though he does kill my favorite plants from time to time.......I think I will keep him!


Happy Father's Day Dear Husband of Mine!
xxxxxooo