Siblings of Kids with PANS - Sibling Day

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.

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