3 thoughts about COVID-19 and parenting children with mental health needs

When the first news reports told us that COVID-19 was on our shores and would be a lot worse than we all predicted, I had the strangest thought.  Maybe parents like me, who parent kids with mental health needs, have an acquired skill to help us handle this better than others.  Maybe.

The quarantine and stay-at-home edicts don’t have an end date and feel like they could go on forever.  We are not sure where our next roll of toilet paper is coming from.  We have to count on people who hold power and authority to do the smart thing and know they may not get it right.

But we are accustomed to ambiguity.  We live each day knowing that a diagnosis might change next week and the medication that works today could stop working at any time.  We are used to being promised something and then find out it’s not going to happen.  So we learn not to bet the farm on what people tell us, even the well intentioned ones. It’s not a matter of trust exactly.  Instead we have the experience over and over again of counting on people who hold power at school, in mental health programs or at insurance companies to do the smart thing for our children and then realize it’s not going to be delivered.

We hold two versions of the world in our heads at the same time – one where disaster is always waiting and one where we have a hope filled vision of the future.  So my first thought was that we have the needed skill set down already.  I spent years, from the time my son was small, never sure if it was going to be a good day, where I had a bit of control over how things would go or a bad day, where his mood was the rocket booster for a day spiraling out of control.  I developed the skill of living with uncertainty big time.

Maybe parents of children with mental health issues are better at this than other people, I thought.

That was my first thought.  Here is my second.

Our disrupted lives are even worse for parents raising children with mental health needs because they already are the therapist, the coach, the nurse, the structurer and the reporter.  Most parents are already maxed out.  There were so many days before the pandemic where we didn’t have one iota of energy, patience or motivation left by dinnertime.  Sometimes there was nothing left by lunch.  Because of how our lives have been upended by the virus, we now have several more roles.

Add in teacher, usually special education teacher, without any training to teach the curriculum, manage classroom behaviors (familiar with those) plus technology expert.  Sure there are plans we can follow and Facebook live or videos to consult.  But there are how-to-do-it videos showing you how to change a tire or cook a 5 course meal.  It doesn’t take you from still-figuring-this-out to I’m-up-to-speed very painlessly.

Now add in technology expert. Telehealth is the widely promoted new option and many parents like it.  But others struggle with the apps, technology and internet access issues.  When you don’t have an iota of focus left, it’s just another barrier that is now up to parents to figure out.

On top of all that, our kids are famous for not transitioning well at all and this came about so fast.  Some parents didn’t even have time to get the school medications from the school nurse.  Others are trying to figure out where the classroom is actually located in their homes (kitchen counter? living room couch?).  Some have children in programs and they can’t see them in person or have limited screen time with.  Others have children who were abruptly sent home from programs with a ridiculously small amount of transition planning.  Helping kids through a rough changeover from life as it used to be to life today is far easier if you have a clear picture of what things should look like.  Most parents are still figuring it out and tweaking it.

Other parents are anxiously watching their children ramp up or slowly shut down.  They are experts on their children and know the danger signs of an emerging crisis. Families are doing everything they can to hold off on a visit to the emergency department because no one wants their child or themselves exposed to this horrible virus.  They feel afraid to fail and determined to get through one more day and then another.  But the toll it exacts is pretty enormous.

Last, there is the isolation.  The sigma of parenting a child with mental health problems damages family closeness and friendships even in the best of times.  In times like these, even though we are overloading the cellular and internet networks, the isolation is increased tenfold.  Parents feel it deeply.  Many post questions or vent on closed Facebook groups or call in to virtual support and discussion groups.  They’ve become the new gathering place.

My third thought was it’s even worse for our children.

The greatest fear children have is that they will lose one of their parents.  News on television and online shows us pictures of front line workers pleading for protective gear and graphs of multiple deaths.  It bombards us all, even if we try to limit how much we watch or our children see.  I lived in Southern California when my kids were little, where the news reports the number of freeway deaths every day.  For most children living there, their greatest fear is that their mom or dad is going to die in a car accident. Most children don’t express and it and many cannot articulate it.  But it lies underneath their view of the world and stays there for a long time. This is much the same.  For kids who already cope with anxiety and depression, it can have an even greater impact.

I had these three thoughts and they are with me every day.  I think they probably will be for a long time.

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