The previous post touched on some of the parenting changes that helped move our dynamic into a slightly better place while stuck in flares before PANS completely wiped out our family. If you don’t know, we experienced more of a snowball effect and things slowly got worse until we were just barely at crisis levels before we were diagnosed. So, what worked in 2012 did not work in 2018.
There was a period of time when things were not severe but they were rough. Lots of hitting, arguing, trashing of the bedroom. I learned a few things that would help minimize episodes at the time. These are things that worked for my family and will not work out for every child and could even trigger others. You know your child best!
Picking battles will always be at the top. Lower your standards and expectations. Just put those on the floor and walk away. The child who could previously do their math homework and then unload the dishwasher now has an inflamed brain and is very unlikely to be physically able to do these things at all much less do them correctly. If they’re having a good day, that might be a good time to suggest some productive things. If that doesn’t work, don’t feel guilty about it.
Keeping their hands busy. I learned early on that busy hands will be far less likely to hit or pinch or throw. Sometimes this literally looked like giving a bowl of flour, water and a table covered in saran wrap or tin foil. Sometimes it looked like rice and bowls, even at 9 and 10 years old. Soap, bubbles, slime, paint, dirt, whatever would not physically hurt anyone but would keep the hands busy and as dirty as he wanted was what I aimed for. Please don’t mistake this to think I was some magical Pinterest mom with loads of sensory activities on deck ready to choose. I woke up, assessed the situation in the morning and then looked in the kitchen. It would often go like this: “Heyyyyyyy, how about after you help with breakfast, you can play in some flour and make some pretend biscuits or volcanos?” If that blows up in your face, don’t feel guilty about it.
Letting them make choices. As many as possible, keeping the environment as demand free as possible. Lots of ‘this or that?’ can be helpful as well as offering options when something isn’t a choice- like “Bed in 15 minutes or 20?” If that doesn’t work out for you, don’t feel guilty about it.
Indulge in their special interests if you can. We watched a lot of animal and nature documentaries. If you can’t, don’t feel guilty about it.
The element of surprise. I learned that if I was fast enough, I could stave off or even stop an episode by making the most random and ridiculous interruption I possibly could. One time, as I felt the pressure building and I started to panic, I started scream singing. Another time I whipped out my phone at yelled “A pokemon! Help me catch him, hurry!” My husband would sometimes ‘randomly’ come across a cool car on his phone that he just needed to see right then. Sometimes it would be a really silly face that would snap him out of the oncoming disaster. Think on your feet, but even if it doesn’t make sense, it’s likely to be so ridiculous that it’ll work. If you can’t find it in yourself to throw out a sick dance move, or belt out an annoying song, don’t feel guilty. You’re doing enough.
If they’re on a special diet, try really hard to make a few of their favorite treats at home. It really makes a difference to have a homemade Reese’s cup when you’re not allowed to eat them. If you’re exhausted from working all day and don’t want to, don’t feel guilty about it. If you just don’t feel like it, don’t feel guilty about that either.
Lastly, don’t feel guilty if nothing works and you’re just stuck. It’s not you, it’s not your fault. You’re doing the best you can for your babies. I did not do these things every day. Sometimes my energy was depleted, and I just let the fall happen. It was mostly out of my control anyway. Sometimes I just cried in a corner instead. Most of the times, these seemingly fun mom things were not done from a happy place, but a scared, panicked place. If my cup was empty, I couldn’t give anything else.
And that was okay too.
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