As soon as Halloween is over the world launches into the excitement of the holiday season. We love the holidays like any other family. We love the décor, fun traditions and extra time set aside to spend with family. But let me let you in on a little secret. As the hustle and bustle of the holiday season moves into full swing, a different kind of hustle and bustle begins behind the closed doors of the PWS community... Anxiety.
Our children have anxiety over disrupted schedules, new environments, unfamiliar people, and FOOD. As parents we have anxiety over our children, meeting family and friend's holiday expectations, and FOOD. It is easy to lose the joy of the holidays. Many parents in our community find themselves BEGGING for this time of the year to be over before Halloween has even passed.This year the holiday's started out rough. It seemed that with each holiday decoration that made it's appearance, Kimber's anxiety would bump up a notch. What seemed like all of a sudden, we found ourselves battling behavioral outbursts, sensory issues, and an intense interest and obsession with food. We had a road trip scheduled for the week of Thanksgiving to see family in Arizona and California. The closer the road trip came the deeper the pit in my stomach sank. I honestly didn't know how we were going to be able to leave our home without it being a total disaster. Not wanting to ruin the holiday spirit, I kept my anxiety to myself and instead just started planning to handle damage control on the road to the best of my ability.
We were in for such a HUGE surprise. Each family member we stayed with and visited on our trip insisted on taking us grocery shopping to make sure there were "Kimber friendly" options at each meal. My brave Grandma even tried her hand at making Kimber "cauliflower rice" for a large family get together. Everyone was SO good at making sure Kimber didn't get into food she wasn't supposed to by taking "shifts" watching her, allowing me some much needed time to relax.
I was so worried about not being able to "keep up" with other's expectations of our visits. While most toddlers would love to be a part of all the "action", Kimber more often than not needs her down time away from people and noise. I was relieved when our family also allowed us to take the lead when it came to our daily schedule. With no pressure to fill the day with parties and activities we were able to take each day one at a time and adjust the agenda to what Kimber could handle without being overly exhausted. Even though I know everyone wanted to hug and play with Kimber they were kind enough to respect her space and let her tell them when was a good time to interact and when she needed a break. What could have been a stressful week managing meltdowns became a relaxing time visiting and enjoying the company of family and friends.
I am SO grateful for my family and for all they did to make this Thanksgiving extra special for me as a mom. As Christmas approaches I wanted to put together a blog post and try to identify EXACTLY what made our Thanksgiving so successful.
Here's the short list I came up with that has the potential to make ALL the difference in the lives of the family you know living with PWS:
- Food - We will get the obvious one out of the way. Having a family over for the holidays who have someone living with PWS means set up of your party will have to be a little different. Buffet style "grazing" of snacks and desserts is just not an option if you want the family to be able to relax at all. While you may not be able to dedicate a whole shopping trip like our family surprised us with, it means SO MUCH to me when friends text the planned menu ahead of time so that we can adjust our menu plan for that day or bring along approved substitutes.
- Environment - the BEST question you can ask when inviting a family with PWS to your holiday party is "How can we make this enjoyable for your family?" or "What would be easiest for you?" Sometimes simple things like having a designated "quiet spot" where we can take Kimber when it starts getting too crazy for a little break has made the difference between us being able to stay for the duration of the party and having to make a strategic exit. Asking this question sincerely is one of the kindest things you can do.
- Respect - There will be sometimes where we have to decline an invite for no other reason other than the fact that the "stars just aren't aligning". On coming illness, poor sleep, missed medication, a change in therapy are just some of the factors that can add up to "the perfect storm". As parents we learn to see signs of this storm brewing a long ways off. Although phrases like "I'm sure she will be just fine." or "You can't just keep her from celebrating the holidays her whole life" stem from a desire to convey love and acceptance, it pours salt in the wound. We REALLY do want to be there. We REALLY do want to have a "normal" holiday season, but declining an invitation is what we know is right for our family at that time. Respecting that decision makes a very hard choice a little easier to accept.
Though these may seem like simple things, they really can make the difference as our family experience this Thanksgiving. We hope you have a wonderful, safe and enjoyable rest of the holiday season!
