Special Needs Parenting during a Pandemic

I originally wrote this on 4.1.2020...

I have tried very hard to stay in touch with people I know despite being extra locked at home. I feel the tension from most people as our minds buzz around wondering how bad this will get (or not). There has never been a crystal ball, but we all want one as we are asked to cancel all of our fun activities, work and school. For me, the first week was the hardest. I don't know if it's because it became so real so quickly or that I was being too optimistic. I just know that by Friday of the first week I finally had to stop moving and thinking. I laid down on the couch and felt tears at the surface. It finally hit me.

There was a moment/period I had to mourn that Grant wasn't going to finish his school year (er, um... again). That if he didn't go to school, Scott couldn't get anything done and I wouldn't either. I have had days trying to process how I am supposed to (am I supposed to?) work at home with a profoundly self injurious child and run a company. Scott lost his job about a month ago. What a disaster.

Where it really hurt was the multiple calls and texts from medical professionals. First it was Park Nicollet. They were cancelling his annual pre-op for ECT. We problem solved. Should we do this over the phone? I asked myself, "they are seriously not going to let us go in for a quick check-up???" (Keep in mind this was like day 3 for me). I couldn't honestly process why suddenly over night this appt was a no-go. It was good I got that call because it gave me a good idea of what was going to come.

Next call is from his ECT dr. It's explained to me that only inpatient people would get ECT, all outpatient were finished. Let's just say I felt like scooping my jaw off the ground. WHAT? It was week 1! How was it the week before there was no mention of this and now a few days later, no more ECT...indefinitely. Which meant, we would we be starting his treatment over (again) and then what would life be like until that day? How are we going to ?? No PCA's, no behavior company, no ECT, no school. Just 2 parents no longer working and taking care of an aggressive, self-injurious child with no routine. All my worries about money swished out the door as my son's mental health was going to possibly go somewhere very worrisome.

I calmly explained that Grant could not be simply written off this easily. The hospitals were not at full capacity, in fact, they were empty (they cancelled everything)! So why can't we continue to go until there is a real issue? I guess the fear that we would catch COVID-19 was reason #1. I explained if Grant was not permitted treatment that the odds that we will simply end up in the hospital pysch dept was high and because there is nothing in MN...we will end up out of state...again. My heart sunk. I was calm on the outside. On the inside I was screaming and ruminating. It's not about it being fair. It just felt insane and then it made me wonder if the hospital was hiding something. Why are we so quick to cancel appts and more importantly who decided my son's appt was elective?

I am active on Facebook. (I am not necessarily proud of this, I just am). This led to reaching out to other ECT/Autism mom friends nationally and we all found we were in different stages. Some moms never considered this possibility and others were already being told no to anymore appts. We had a collective "oh shit" moment as we all knew how hard life was without ECT. These are kids that have not responded to meds or behavior modification techniques. So...

The good news is that my calm advocating equaled ongoing appts for Grant. We never had to take a break from the only treatment that currently works.

My gut tells me that Minnesota kids are not returning to school this year. I don't know what that means for high school or college kids. I know there are bigger issues like people not getting ill and passing away. People losing their homes, cars, and businesses.

I now worry less despite having no help with G, no job leads for my spouse or myself. We are accustomed to being home. So if someone is complaining about not getting to a fun activity or not seeing friends/family...it seems insignificant to some larger issues.

Our family is used to a certain level of stress. This still remains a bit surreal every time I go in a store and see the empty shelves. I suppose the privilege of living in the US has hit me the hardest. I have never seen a time where shelves weren't fully stocked and I never meant to take this for granted. However, here I was...holding back tears as people's behavior shifted subtly and signs told us how much we could purchase (if the item even existed).

I always knew that having a disabled child during a crisis would be hard. None of the zombie movies ever hit on the real pain points of what this would be like for everyone or anyone. The fact that Hollywood always focuses on the attractive, the able bodied, etc. Not much of a real-ness there. Where are the babies, the elderly, the disabled? I guess they all got gobbled up? Great.

However, my depressing though process just became I actually believe we will be ok.