That time when you couldn’t leave your house . . .

Feeling trapped?  Me too. I’m staring down a long dark tunnel with no end in sight.  I never imagined a time when my son would not be able to receive any services at all.  I would never volunteer for this — handling the behaviors and hyperactivity on my own day after day.  Well, to be fair, my husband really does take over after he finishes work. And my kids take their turn watching him as well.  But we’ve only made it through one week, and that’s probably just the tip of the iceberg.  



My list of worries is extensive.  My dad has been in the hospital for over a month in Seattle.  He’s already very sick, and he’s not young. Sorry Dad! I’m worried about my elderly friends and neighbors.  I’m worried about my kids, my husband, and myself. My OCD tendencies have come out in full force, yet they almost feel like an appropriate tool given the current climate.  It doesn’t help, while I sit and worry, that I am putting out one fire after another with my son. Is there anything to feel happy about right now?  


Yes, there are always things that can bring us peace, calm and happiness.  One positive takeaway: the rest of our lives should feel somewhat easier after this, right?  There’s always a reason to hope, even if you have to dig through a lot of hard earth to get to it.  We’re taking it day by day, hour by hour, one walk at a time (yesterday we went on three).  


There’s no guidebook on pandemics, and learning to live in social isolation with the walls caving in hasn’t been easy.  There’s no break when the kids are at school, there’s no therapy for John in the afternoons, nor really ANY other activity to break up the day.  So, we’ve had to create our own breaks in the day, and force ourselves into a routine.  


We’ve started getting up all at the same time, and doing some form of exercise together (jogging, yoga, tabata, random stair workout – you name it!), and then we have breakfast and read a few scriptures together.  Then we shower and get dressed, which is a bit hilarious from an outsider’s perspective because fighting over hot water & cold showers for the laggards is a real thing.  Then we do some home schooling & piano, followed by lunch together & recreation in the afternoon.  Does John really participate in most of this?  Not really.  But routine is good for him too, and even if it’s just seeing these patterns, and going for a walk (or 3) in the afternoon, I think it helps a little.  To end the day we’ve been doing a family movie night, and by no small miracle, John has actually sat through long stretches of a couple movies.  That’s been so fun for us as up until this week, we’ve NEVER been able to even watch 5 minutes of anything together.  


Are we still going a bit crazy?  Yes.  Are the days long and do we wonder when it’ll all end?  Absolutely.  But at least having a schedule has made it a bit more manageable, and even if you don’t follow one to the letter, I hope it’ll help you find a bit of order too in these chaotic times.  And not just chaotic at the macro level, I feel the extra weight of all the parents of special needs children who are getting run ragged (even more than usual), and for whom “home centered learning” doesn’t do much, and certainly doesn’t give the respite that’s can be so welcome with the school day.


To my fellow special needs parents: you are the people I’m thinking of the most during this difficult time.  You’ve got a heavy burden to bear right now. It’s heavier than most. You’re not just homeschooling your kids while they fight with each other and talk back to you, you’re homeschooling your kids while they fight and talk back, while simultaneously sprinting to the backyard to make sure your special needs child didn’t hop the fence or eat a mushroom.  It’s a tough circus act that you can’t afford to lose. Don’t let go of that trapeze whatever you do. 


I’m sending you the world’s biggest fist bump.  Now go wash your hands while singing happy birthday twice and take a deep breath.  We’re in this together.