The holidays can be a stressful time for everyone but for a family with a child with Prader-Willi Syndrome it can be extremely challenging. Time off from school, anticipation of presents, decorations, the hustle and bustle at stores, and all of the extra food and treats that go along with this time of the year can be absolutely overwhelming! There are things though that can be done to help life go on as calm and peaceful as possible. Of course what works for my family and I might be different than another family but I would like to share some things that we have discovered over the years.
1. Routine- Our children do not go to "school" as we homeschool but I have learned that time off, beyond a few days, only results in behaviors and anxiety. When a child with PWS gets bored...bad things happen, LOL. (laughing but NOT as it is the honest truth!) This is why for the most part we homeschool year around. We do take July off and a few days here and there throughout the year but keeping a routine going has only proved to be beneficial. Whether it is a first grade online curriculum (or whatever grade you child is at), learning games on an iPad, puzzles, workbooks, or even work boxes. (do a search for workboxes on Pinterest for lots of neat ideas!) We also have both children keep up with their daily chores such as taking care of our many critters, doing their own laundry, and helping around the house.
2. Food- Yes....the F word. I try and keep up with eating the same type of diet we normally eat. I usually only make a couple of desserts for Thanksgiving (easier to pick from two than say....6 choices) and he gets one piece that day and one the next. During Christmas we normally make small batches of a couple of kinds of cookies. For both Christmas and Thanksgiving meals we keep the food very basic. When I was growing up the counters in the kitchen were covered with every holiday food imaginable! This is just not a good idea for someone with PWS. Truthfully all that food is overstimulating for even me! We will have ham or turkey, some type of potato, dressing, a couple cooked vegetables and always a tray full of raw vegetables. Often I prepare A~man's plate (I do not let him do it himself but he gives me input in what he would like) in the kitchen. (we do not place the serving bowls on the table) It helps to start with the raw veggies as they take up a lot of room on his plate and then add the other food. The only seconds he ever gets is a few more raw veggies. That sounds kind of strict but that is the way we have always done it so there are very rarely any complaints. After eating we try to put the food away as soon as we can as having it sitting can really cause him to feel anxious. He will actually remind us to put the food up if we do not right away.
3. Exercise- We walk daily (3-5 miles) and we especially try and keep up with it this time of year. Just this week though it has gotten bitterly cold so we plan our big walks for the days over 50 degrees...and on the other days we go walk at the mall. A~man LOVES to walk at the mall as it also gives him the opportunity to people watch. Our mall is never really busy but if it was it is also open before the stores are so people can walk in the winter. Another idea is swimming. A couple of winters ago we took the kids to an indoor pool and they swam laps (which they actually love) and played 4-5 times a week. We also have a treadmill which our son doesn't mind but we only have him use it if we cannot do any of the other options.
4. Activities- We keep things pretty simple with presents and make a lot of them ourselves. Shopping can be hard for our son as he gets so excited to be getting something for other people AND he sees so many things that he wants. Hubby and I normally take him out once each so he can buy a present for each of us but most of the shopping I do is online. I'm not a big fan of crowds myself.
There are a lot of extra fun activities that happen this time of year. We try to limit it to one a week and what works for our son...is to only tell him the night before if we are going the next day. I know some people do well with calendars with the events happening over the month but this only causes our son to obsess, repeat what's happening, and get anxious about it. Of course telling him the night before doesn't always work as he has eagle ears and sometimes figures it out before hand. ;)
5. Last but certainly not least we talk about why our family celebrates Christmas. We have lots of books and videos that make this time of year very special for all of us. I'll share more on that later.
I'm hoping to do another post when I think of more things that work for us but I would love to hear what works for other peoples families during the holidays!