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:

• Acceptance of differences
• Empathy for others and their challenges
• Dependability
• Patience
• Kindness

 
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.

• Anger – that they don’t get enough attention

• Worry – about their brother’s/sister’s condition, health, well being, and future
• Jealousy – that so much attention is always on the sibling
• Embarrassment – that their brother/sister is so different
• Resentment – that they have to take care of the brother/sister or that their own needs are not met
• Guilt – for having negative feelings about their brother/sister.

 
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

• Our children who are the bravest, strongest, toughest people we know. They are our inspiration.
• Doctors and researchers who have blazed the trail to better awareness, understanding and treatments for our kids.
• Doctors who are just starting to learn about PANS/PANDAS and not dismissing the diagnosis.
• Lecturers who donate their time to help educate our community.
• Educators and School Administrators who are dedicated to creating a school environment that supports our children so they can continue to learn and feel safe.
• Therapists that support the multitude of PANS/PANDAS symptoms children experience.
• School Nurses who continually want to learn more about PANS PANDAS.
• The community of PANS/PANDAS families who support each other day in and day out becoming some of the best friends one could ever imagine.
• Siblings of PANS/PANDAS kids who have a unique set of struggles but are a shining example of compassion and understanding.
• Family and friends who support families caring for children with PANS PANDAS.
• Donors who support the efforts of NEPANS. Without you we could not fulfill our mission of creating awareness and support.
• Our volunteers who help make all the NEPANS programs run smoothly.
• To all of those who help spread PANS/PANDAS awareness and understanding. Each of you make the next day more bright and hopeful than the last.
  

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

• It’s Your Holiday. Be completely traditional. OR. Take some traditions but leave the rest. OR. Make completely new traditions. Just be realistic about what your family and your child with PANS is capable of and what will make everyone happy.
  
• Make a Plan. Make it reasonable, don’t overbook but plan something to make it special. And make a back up plan just in case. Try to plan time to relax.
• Prep for Change in Routine. The plan helps.
• Laugh. Don’t forget. It is very important.
• Be Thankful.

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.