Today is Sibling Day. Let’s take a moment to celebrate the siblings of our kids with PANS because we know the entire family feels the impact of PANS. Let’s put the focus on them today (or sometime this week) and give them a special thank you for all they do, all they forgo and acknowledge how their life is affected both positively and negatively. Let them know you understand how difficult it is for them. Let them know that your door is always open for them to talk about their feelings. Celebrate all of their accomplishments too.
Some kids do not adjust well to having a special needs sibling while others seemingly become a super hero. No matter what, siblings of children with special needs have their own set of special needs themselves. Having a sibling with special needs create challenges but it can also present opportunities for growth.
Siblings often develop good qualities as a result of these challenges:
Siblings also may experience conflicting feelings and have trouble coping with the demands the special needs child places on the family. The brother/sister with PANS will typically demand greater attention and the health issues/behaviors are can be confusing, frustrating, scary, etc. Siblings often hold a lot in and their worries and frustrations can take an emotional, social and academic toll. Sometimes it is important that the siblings have someone to talk to. Some kids convince themselves that they don’t need anything or attention for themselves and therefore try very hard to not get in the way. Some kids find ways to get attention, either trying to become indispensable and perfect or by negatively acting out.
It is essential for parents to foster an open dialogue between themselves and the siblings. They should, age appropriately, explain what is happening with their brother/sister and allow time for the siblings to voice their feelings and questions. Ultimately parents need to let their kids know they hear them, understand them and empathize. Also, it is important to highlight the siblings’ accomplishments so their progress is not forgotten. And when they have struggles, time and attention is focused on them as well. Try to set aside time for each child. That time might not be equal in duration but it should be consistent and meaningful. Yes, all easier said than done during an acute crisis. But sometimes even short acknowledgements of the siblings’ needs during those times are sufficient. The reality is that some of our families have multiple children with PANS, which can compound the needs of the sibling without PANS. Remember, we are all humans doing the best we can. You are already doing a great job and learning and improving as you go along.
NEPANS wishes the PANS/PANDAS Community Happy Holidays and a Happy New Year. We hope your days are filled with joy and wellness.
We have a lot to be grateful for. The PANS/PANDAS journey is not an easy one; it can be filled with exhaustion, heartbreak, worry, frustration, roadblocks and more. But during this time of Thanksgiving we encourage everyone to reflect on their life and see the good things, the rays of hope, and the many things we can be thankful for. NEPANS works to spread PANS/PANDAS Awareness everyday but we could not do it without our large community of children, parents, doctors, teachers, family, researchers, therapists, volunteers, friends and donors. We are thankful for each and every one of you.
with Thanks and Gratitude,
The New England PANS PANDAS Association Board
PANS/PANDAS Holiday Survival Guide
Holidays are fun. But they are stressful even without throwing an autoimmune disease into the mix. Take a deep breath. These are your holidays, no one else's. The holidays get packed with activities pretty quickly. The important thing is to be around family, spending time, trying to catch a breath and being thankful for the little things. Most importantly, find joy in the moment. Here are a few tips from NEPANS to help you!
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.
NEPANS Board Members & Special Guests
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