The holidays are a festive and joyous time of the year. Friends and family gather together to enjoy fun, festivities and, of course, an abundance of food.
For most of us, food is an important part of these parties and celebrations. By preparing, serving and sharing our holiday dinner, we are, in a way, also sharing our love.
But for parents of children diagnosed with Prader Willi Syndrome, the holiday season is a time to be vigilant, a time to monitor our child closer than usual to ensure their very survival.
Every holiday season, we are reminded by our national organization, PWSAUSA, that this can be a deadly time of the year for our children. Due to a malfunctioning hypothalamus in their brains, children diagnosed with PWS, lack the ability to control their hunger and if left unattended, they will eat until they die. This is not a condition that our children will outgrow, they will need to rely on others to monitor their food intake for the rest of their lives.
During the holidays, homes are filled with festive discussions, folks talk and mingle, creating a spirit of good cheer and commotion. It is during these commotions, that we parents are easily distracted, creating a perfect opportunity for our children to disappear and search for food, food that is of course, everywhere.
School functions and party celebrations almost always include tables overflowing with candy and desserts. Teachers and aides must be carefully reminded of the devasting consequences of leaving a child with PWS unattended during these types of events. They must be informed that a behavioral meltdown is a certainity when our children are subjected to the visual stimulation of such large quantities of food and sweets.
When my son, Nicholas was first diagnosed with this bizarre and deadly disease, one of the first fears that came to my mind was how our holiday traditions would be effected.
Thanksgiving dinner was almost always served at my home, the theme always involving food and lots of it. I enjoyed preparing many of the holiday specialties. Turkey, stuffing, shrimp, mushrooms, sausages, cheese, crackers, chips and dips filled every inch of the holiday table. Decorative dishes, overflowing with peanuts and candy were placed strategically around the house. Warm pumpkin pies, brownies and chocolate chip cookies covered another festive table along with apple cider, egg nog and a variety of soda. There was plenty of food, family and fun.
But how could my son be successful in this type of environment? How would we monitor his food intake? Would he be overwhelmed by the many sights, sounds and smells associated with a party environment? Would he have a tantrum? How would he ever feel comfortable surrounded by so much food?
After a few years of living in denial and trying to maintain the holiday status quo, I eventually came to realize that Nicholas could not be successful in this type of environment. If I wanted to ensure the health and safety of my son, it all had to change.
I was so very sad.
I felt like we were deprived and cheated, swindled out of the opportunity to enjoy our sacred holidays. The fun, the laughter, and most importantly the spirit of the holidays, would be enjoyed by everyone….everyone but us.
I believed anything different than our usual holiday routine would be sad and uncomfortable. I was sure we all would be miserable.
But as a parent of a child with special needs, you learn to be resilient. You learn to stop living in the past. You learn to live each day in the now, experimenting with new techniques, new outlooks and new traditions.
For the past two years, Pete, Weston, Nicholas and I have experimented with “going away” for the holidays.
This year, we found a lovely hotel, called the Wentworth Inn in the white mountains of New Hampshire. We stayed for two nights, enjoying Thanksgiving dinner in their cozy restaurant. Nicholas was thrilled, since it contained, of course… a fireplace. The night before our arrival, it snowed, covering the town with a blanket of sparkling brightness.
We took many walks and enjoyed the magical setting. And although we did experience a few “I’m bored’s” and a behavioral meltdown or two, we did not have to address any food issues. There was no stress, no food policing, and more importantly, Nicholas was kept safe. It was an enjoyable holiday experience that we will never forget.
Our new Thanksgiving tradition may not be shared in a house full of family and food but it is still shared with love, love for each other, love for our family and love for our new and different way of experiencing life.
We have learned to embrace different.
We have learned to experience life.
I am thankful to my son for teaching us this.
To learn more about Prader Willi Syndrome, please contact our national organization at www.pwsausa.org. To learn more about our family adventures, please come visit our blog at www.onalifelessperfect.blogspot.com.