NEPANS wishes everyone and their families a wonderful, healthy, grateful Holiday Season. Below is a Holiday Survival Guide for PANS/PANDAS Families with a few highlights from our board members.
In a Nutshell
The Family Gathering
We know our incredible PANS/PANDAS kids are dealing with an extremely tough disease. Some are great about rallying behind your family, understand the complexity of PANS/PANDAS and figure out ways to help out. But then there are others who just simply don’t and are flat out not supportive. So if we are gathering with family and friends, sometimes in order to make things work, we need to plan and put some supports in place to make them feel more comfortable, which in turn can make our children feel more comfortable. We also need to make plans that will support our children so they can enjoy the holidays to the best of their ability.
Is It Worth It?
Yes, you want your family to actively participate in family events. So do it if you can! This question is not to deter you from filling your schedule with activities. But if you are not sure your kid can handle a situation then perhaps it is best to stay home and plan accordingly. Is it worth the exposure to more germs, the added work, the change in routine, the stress of making everything seem “normal” or “perfect” for a few hours or a couple of days? Is it worth packing up and going to their house for the holiday? Is it worth having people over? Is one of them easier for you and your family?
Awareness & Understanding
Do your own PANS/PANDAS awareness training with your family ahead of time. Not everyone will embrace the information but some will. Some people actually don’t know how to ask; they feel uncomfortable broaching the subject but are often happy to have you start the conversation. Be sure to explain how the symptoms affect your child. Tell your family and friends what they can’t talk about in front of your child; what may seem obvious to us won’t necessarily seem obvious to them.
Is family Coming to You? Where will they stay? Maybe your guests need to stay in a hotel to allow for some down time at home in the morning or later evening.
Plan a “Safe Spot”. So you are at Grandmas, now what? This could be a long day… In advance of the holiday, talk to Grandma about her grandchild’s possible needs. Designate one room as a “safe spot” your child could retreat to. If you can, spend a little time in the room before your child needs to and make sure it is set up with whatever he/she needs.
Off Limits! Yes you have graciously opened up your home but your kid’s room is off limits. That is their safe space; honor it. Let guests know ahead of time so you don’t have to discuss it in front of your kid because that can embarrass them.
Support Needed! Ask for help before the event starts in case you need to rest with your kid in the safe spot or quickly leave. Make a plan for who will take care of the siblings that want to stay or who is going finish up cooking, etc.
Bring Everything You Need
Let the Kids Be Part of the Planning. Some kids are not going to participate the entire day but you want them to feel included. One way to do this is to make the holiday not just about the actual day but also about the days leading up to it.
The Back Up Plan
So you are all set to go to Aunt Kate’s. You planned for the good, the bad and the ugly. But you wake up and realized there is no chance you are making it. NOW WHAT!!!! Oh wait, you have a little bit of a plan... breathe. Oh and don’t forget to call Aunt Kate; remember you already warned her that this might happen which is why you did not sign up to bring the turkey, just the lima beans which no one really wants anyway.
The Meal. Maybe you are Julia Child and can whip up a full Turkey dinner without breaking a sweat while taking care of your kid who is in a massive flare. Or you really can’t stand Aunt Kate’s cooking, you thrive on no sleep and cooked a full meal and froze it ahead of time just in case. Or more reasonably, you can take a few minutes now to plan ahead, decide on a few things that you would eat anyway during the week, are fairly adaptable for the particular holiday and have them ready to go. Or just let everyone eat pie, get your kid through a rough day and be thankful that you made it through another day.
The Low Key, We’re Dealing with PANS, Take a Breath Holiday
Your traditional holiday is NOT happening this year. How do you make it special?
Sometimes it just is not going to work out the way you have always done it. That is okay! You are doing the most important thing already: taking care of your family and sick kid. You can do two things.
One: Simply do your best to ignore this holiday even exists.
Two: Figure out how to make a new way work that is easy and fun.
NEPANS Board Members & Special Guests
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