PANDAS/PANS Adds An Extra Layer of Challenges for Kids and Teens
Being a kid can be difficult and confusing at times. Different ages bring different challenges and life lessons.
Growing up with PANDAS/PANS adds another layer of complexity for both the child/teen and the family.
I speak to these challenges and work with families affected by PANDAS/PANS because I’ve lived it. There were days when it felt like things would never get better, especially when I struggled to connect with my daughter. One thing that really helped us was writing short love notes to each other.
Love Notes To My Daughter
I first tried writing notes to my daughter when she was in middle school. I knew she was struggling with her PANDAS/PANS diagnosis along with everything else that comes along with being a kid. She wasn’t receptive to our face-to-face conversations, so I needed to find another way.
I began writing short notes with simple phrases like:
- “I’m so proud of you.”
- “I love you just the way you are.”
- “I know things are tough right now, but they will get better.”
And do you know what? She actually started writing back.
I did not get love notes back initially. Instead, she told me about the pressure she felt at school and how my reactions sometimes made her feel sad and stressed. Thinking about that now brings tears to my eyes.
It was hard to hear what she was telling me, but this was a BIG turning point in our relationship.Â
I realized that she needed me to listen and understand more. And, I need to work on my own emotional regulation as a PANDAS/PANS parent.
I learned so much about my daughter through these seemingly simple notes.
They weren’t just notes—they were bridges that connected us in ways spoken words couldn’t. These notes have strengthened our relationship and opened my eyes to how important it was that I understood how she felt and how she needed me to respond.
Now that my daughter is a young adult, we still write notes back and forth—usually as texts!Â
Why Notes? Why Not Have A Conversation?
Some PANDAS/PANS kids and teens find face-to-face conversations overwhelming. Writing provides an opportunity to communicate thoughts and feelings without the pressure of direct interaction.
Additionally, kids and teens often find it challenging to tell us face-to-face when something we’re doing as parents is difficult for them.
These notes establish communication and lay a foundation for your future relationship as parent and child. They offer another avenue for your child to express how they feel, providing them with a sense of feeling heard and understood—something you want them to expect from their future relationships.
The love notes I sent to my PANDAS/PANS daughter opened up a communication pathway that hadn’t been possible with face-to-face conversations.
I encourage you to try it out. You never know—you might just get a love note back.
One of the effective ways to learn how to parent your child or teen with PANDAS/PANS is to get coaching from me, a PANDAS/PANS parent and a therapist with 23 years of experience: https://parentingwithpans.com/coaching/
Reach out to me today about coaching!
