In the autism world, we always say that there are no two cases of autism that are alike, and recently I’ve come to find that there are no two days of social distancing that are alike either.
My son Jordan is on the more severe end of the autism spectrum. He is completely non-verbal and requires help with all daily living skills. He has attended many Pressley Ridge Programs over the years and formally “graduated” in 2017. Now that he is an adult, he attends an adult day program four days per week and has several Direct Support Workers (DSW) who work with him throughout the week. At least that used to be the case prior to Covid-19. His program was closed on March 16th, and now we have only one DSW providing a few hours a week.
I also have a 20-year-old daughter, Nicole, who attends the University of Kentucky and is now attending college via on-line classes at home. Nicole has dealt with depression and anxiety over the years, and more recently has been experiencing misophonia, or severe sensitivity to noises, chewing, tapping of one’s feet, etc. So, I have some experience with mental health systems in addition to the disability systems. She has been doing great thanks to medications and supplements, but this new quarantined world is taking a toll on her.
Working from home is not new to me. Because of Jordan’s needs, I have often had to work from home if he was sick or his school or day program was closed. I have to say, though, these last few weeks have been a challenge. It reminds me a lot of the days of uncertainty when Jordan “graduated” from the Pressley Ridge School for Autism and then completed his very last Extended School Year program. He hadn’t yet been accepted by his day program because there weren’t any available spaces and we didn’t have the proper waiver funding. I had limited help through a few Direct Care Workers, and I found myself working early morning or late evening hours to complete work uninterrupted. The waiting and the unknown were really challenging then, just as it is now. Days seem to blend together in this new normal. I work really hard to try to stay in the now and not think about how long this could actually go on. Some days seem to drag on forever. Some days go by in the blink of an eye, and I’m left feeling like I haven’t accomplished anything.
For the most part, Jordan is happy now that he gets a lot more time on his iPad while I’m trying to work or get things done around the house (somehow our laundry has quadrupled). He actually uses a desktop computer and an iPad (with headphones) simultaneously a lot of the time. He almost always has at least one copy of his “Rosa Book” with him at all times. (His Rosa Book is a laminated photo book of pictures from his adult prom, A Night to Remember. Rosa has been Jordan’s crush for many years even though he hasn’t actually physically seen her for a long time.) Sometimes the Rosa Book helps to calm him. Sometimes he wants to lean it a certain way against the iPad or desktop monitor and his OCD tendencies rear their ugly head. Sometimes this happens during the day and the sounds (nonverbal does NOT equal silent) and the pounding on the desk are annoying but tolerable. It gets a little more complicated when it’s 3 or 4 a.m. and I’m trying to keep him from waking up Nicole.
Jordan wants to eat constantly, so the refrigerator and pantry doors must be kept locked. He seems to have an increased urgency to get his needs met and a more intense frustration than I’ve seen in a long time. During these fits, he sometimes gets physical with me but is more prone to be self-injurious and will often bite himself or hold his ears and scream. I’ve thought about decreasing his meds and trying a more natural route of supplements and CBD, but now seems like a terrible time to do that. I’ve come to rely on the calming effect of the medication.
Jordan’s sleep patterns are so far off that I wonder how we will ever get back to a normal schedule. Some nights, he is awake for a good portion of the night and then crashes in the afternoon or early evening. While it would seem logical to keep him awake to ensure that he will sleep through the night, it doesn’t always work that way. Our new normal is this crazy cycle of going to sleep too early and waking up too early. I’m often able to catch some sleep on the couch so that I’m able to function. When I read information about how important sleep is it always makes me laugh. Not all nights are bad. Sometimes the meds and the CBD and the melatonin all work together, and we get a glorious night of sleep. Sometimes Jordan stays with his Dad and we get a little break.
Nicole is a great sister to Jordan. We spend a lot of time laughing, dancing and trying to get Jordan to smile. She seems to sense when I’m about to lose it and comes in to rescue me. We even managed to make a TikTok video one night. It was a huge adjustment for Nicole when she realized that she wouldn’t be going back after spring break and would have to continue her classes online. (For the record, she hates online classes. She is a social and visual person and greatly misses being on campus.) Last week was particularly challenging as Jordan was waking her up a lot or making a lot of noise when she was trying to study. This week she seems to be doing much better. Nicole struggled with social distancing for the first two weeks but now is using FaceTime to connect with her local friends. Her Dad is immunocompromised, and it took her a little while to realize how serious it could be for him. As a leader in her sorority, she has a lot of Zoom meetings to plan what they hope is normal recruitment next August, and the interaction with her sisters has helped tremendously.
I can’t even try to explain or rationalize this new existence as I’m struggling with it myself.
As always, I so appreciate the Pressley Ridge staff who are working in the residential facilities, are out in the community meeting families or doing their best to practice telemedicine. We will get through this and hopefully all have a greater appreciation for community and connectedness.