Back when our PANDAS was a mystery, an unknown infiltration into my child’s brain, changing our lives slowly and surely, we were told to alter our parenting practices.
While I hated this advice, it did cause me to take a step back and think about how I can help manage some of the difficulties we were experiencing. At that time the major issues were tantrums/raging and rigidity with sensory issues sprinkled in. After lots of trial and error, I learned that mostly, I needed to pick my battles. It wasn’t going to hurt him or others if he wanted to wear basketball shorts in the dead of winter to school. It wasn’t going to hurt if we cut out all the clothing tags and I didn’t know what size any of the clothes were anymore.
I started implementing less punitive strategies. For example, before difficulties, if he threw a toy, I would send him to time out and then have him come pick it up when he was done. Less punitive strategy for the same issue, I told him toys belong in the toy box. I asked him to pick it up, put it back in the toy box and take it back out 5 times so he can remember where it goes. I also used this the first time he slammed a door- he had to gently open and close it 5 times. I am not kidding when I say over half the time it ended up in laughter because it is just so silly to walk back and forth and do the same things repeatedly. We connected afterwards, I explained why it’s important not to throw toys/slam doors etc and remained positive that he will remember next time.
I also learned that including him in the planning of our week helped with the tantrums stemming from unexpected changes or variations to the day. We worked on charts together that told him about what day certain things were happening, down to the hour for some things. I think it helped reduce anxiety. The biggest con to this is that sometimes things happen that are beyond our control. Like a relative gets sick, so we can’t visit on Thursday as planned and need to go Sunday instead. I never did find a way around that one. In addition to a simple schedule, I spent a lot of time giving reminders: “15 minutes until…” “10 minutes until…” sometimes going down to “30 seconds until…” if I could tell it was about to be a difficult transition from one thing to the next. Getting on his level, connecting physically with my hand on his hand or shoulder (unless he was already ramped up) actually did wonders. To be honest, I adopted a lot of things you’d see in a kindergarten classroom for my then nine-year-old. Visuals, positive reinforcement, eye contact, and charts. These were things that we didn’t do before, that weren’t modeled for me and that a lot of parents around me did not do. However, I met some amazing people who were great at this type of parenting and I literally copied their techniques until I could do it without thinking. They say fake it until you make it!
Parenting a PANDAS child is not textbook, it’s not predictable and most importantly, the behaviors cannot be parented away. In my opinion, I think it’s important to try to create an environment where any child feels safe, heard and respected, but in the case of a PANDAS/PANS child, this feels imperative. Every aspect of their lives is spinning out of control – having a safe space to land can be a saving grace. When you are in crisis mode, avoiding triggers is the top priority (again, in my opinion) to keep a safe space conducive to healing.
There is never THE right way or answer, this is only what I learned to be helpful in my experience early on, before things got extreme.
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