Wednesday, December 29, 2010

Great Tips for the Holidays!

This is a little bit late for the rest of us, but it still contains a lot of good reminders for navigating the holidays when someone you love has PWS. A lot of this doesn't apply to us just yet with Dean since he is still really young, but it also is helpful to us to think things through and lay the groundwork that we can. This way our kids will grow up knowing no other way to celebrate the holidays. Or something like that. :)

Taken from the blog of the Latham Centers in MA, a facility for adults with PWS. See the original entry at: http://lathamcenterspws.blogspot.com/2010/12/top-ten-strategies-to-survive-and.html.

1. Remember how lucky you are. Ultimately, the holiday season is a time of reflection and a time to give thanks. Families touched by Prader -Willi Syndrome have much to be thankful for and the more you can stay in touch with the spirit of the holiday the easier it will be to get over the bumps in the road. Consciously stop and list the many reasons for gratitude. This simple mental shift can alter the entire experience.

2. Choose your landing spots carefully. Maybe Aunt Mary’s house is not a good place for you to go. Every year she disregards everything you have told her about PWS and you leave her house a frenzied mess. You can say no and you must say no to these “obligations”. During the holidays especially you must surround your family with people that make your life easier not more difficult and show a level of understanding that supports and nurtures your family rather than obstructs or hurts them. If the people aren’t right, the location is wrong or there are too many unknowns, opt out of those events. It is better to hurt some feelings than to be involved in a messy spectacle. The people who truly love you will understand your choices and will stick by you no matter what.

3. Maintain regular routines. As much as possible, you want to maintain the same consistent schedule you had pre-holidays. This consistency is relied upon by your child to create their own internal sense of security and when it is upset there is increased anxiety. With holiday parties and different people, this can be a difficult goal to achieve. Even if it is only maintaining the basic structure and important anchor points- like meal times, TV shows, nighttime routines- then do that, but the more you are able to keep things normal as usual the more success you will have in the holidays.

4. Plan ahead. During the holidays do “advanced scouting” and create a plan. These new experiences are exciting to many, but for individuals with PWS they can be overwhelming and debilitating. The more we can do to alleviate the unknown the better. Get menus of holiday meals, pictures of family members you will see, lists of activities and go over all of these items with your child well in advance of the outing. Create a specific game plan you will follow including, arrival/departure times, specific food plans, list of clear expectations. Stick to it through the entire event.

5. If everyone is watching then no one is watching. - Make sure that someone is specifically assigned to be with your child at holiday parties especially around food or opportunities for food. When you assume that everyone is there and watching when at a crowded party then typically no one is and things can happen. Take turns providing individual support and oversight so that you also have time to relax and enjoy yourself.

6. Be realistic. Even though it doesn’t always feel this way, there are no obligations in the holidays that must be met. The truth is there are some events that may not be appropriate for your child. It is better to act from this forethought rather than crossing your fingers and jumping into something that ends badly. Even if you are scheduled to be somewhere and you realize that your child isn’t in the best space for handling this new situation, you can opt out. You know your child better than anyone and must act on your instincts. Don’t let other’s expectations determine your actions.

7. Have an escape plan. There is a good chance that not every party, outing and/or visit will go well. Be prepared for and understand that fully before going into each situation. Having a plan will allow you to react seamlessly if things arise during the event. Ask yourself what you will do if your child is overwhelmed or acts out at the event. For example, take two cars when you go out so that just one person must leave with your child rather than the entire family. Plan for the worst case scenario and that way you will be prepared in the event that it does.

8. Create special moments for everyone. Although it takes extra planning, and often comes with more stress, the holidays can be navigated very successfully by any family touched by Prader- Willi Syndrome. In order to do this, you must be thoughtful in your plans for all family members. Create special family traditions that support and nurture all family members. Although you might have to do things differently, the holiday routines you create can be even more satisfying.

9. Take care of yourself. Even though this is easier said than done, it must be a priority. Find ways to care for yourself and reduce your own internal stress. Even 15 minutes walking around the neighborhood can do wonders to your ability to handle stress. Whether it is exercise, hot baths, quiet reflection (outside of the house if necessary) or shopping, find little ways to stay balanced. If you don’t take quality care of yourself then you are unable to help anyone else.

10. Laugh. Keeping a sense of humor can save your sanity and your holiday spirit. Understand that when you are stressed, your child with PWS is very sensitive to that and often feels unsafe and insecure as a result. Attempting to stay “light” and “free” in the chaos can be just enough to change that message. This is very, very difficult to do during the holidays for everyone. Keeping things in perspective and changing your focus to what is going right can be very helpful.


"I am thankful for the mess to clean after a party because it means I have been surrounded by friends."
~Nancie J. Carmody

2 comments:

Tim Vaughan said...

Thanks for sharing this Ali. . . just as a sidenote, Latham works with adults and children diagnosed with Prader Willi Syndrome. These are two seperate programs,but we educate students as young as 8. May your New Year be filled with hope and happiness for you and your family.

Ali Foley Shenk said...

Tim, thanks for commenting! I didn't know that Latham works with kids, too! That's great. :)