Luke cried today. It is the first time I have ever heard him cry. He woke up and a few minutes later just started sobbing – sobbing that sad, heartfelt cry that escapes when you feel trapped with no end to the trial in sight. When upset, Luke generally cries for a few seconds then interrupts with his stim words like, “Do you want a yellow bounce house, yellow bounce house, yellow bounce house?!! I know perfectly well that it is not a yellow bounce house that he actually wants (as he is, in actuality, both fascinated and terrified of bounce houses). No, this was not that interrupted, stimming frustrated or angry cry, it was a genuine, heartfelt expression of sorrow and confusion. It broke my heart!
The struggle we have is that he genuinely cannot tell me what he is upset about, so I play the guessing game. Of course, I assume that all of the changes in his schedule and routine are the core issue, so I suggested, “Are you upset that you don’t get to go to school?”
“No School! No School!” was his eventual response. His sad, mourning cry slowly evolved to his more typical crying pattern as he interjected, “No school! No church! No school! No church!” into the bouts of screaming and biting himself. We used his favorite teddy bear, “Bahr,” and talked about it. Bahr tried to explain to him why we have, “No school! No church!” He understands much more than I realize, but he really was not demonstrating to me that it was helping. I tried to find a children’s video on YouTube that could help. The one I found pictured the Corona Virus as small red dots outside and explained that we need to stay inside. He immediately ran to the window and said, “It’s white outside! It’s white outside!” (Excellent communication as it had snowed!)
Clearly, the video did not help, so I tapped the vast knowledge of a group of special needs
parents on Facebook, and quickly found a social story that I could print out and read to him that specifically addressed why we cannot go to school right now. This helped tremendously and he was able to move on with his day in a relatively normal rhythm. Relatively normal until my husband came home from work, that is.
Luke REALLY struggles when people come into the house – ALL PEOPLE – even his parents. For the past couple of years, we have needed to call ahead to let whoever is with Luke know to tell him we are almost home; then, once we are in the driveway we honk so that he can come out and meet us at the car and then enter his space in the house. Lately, however, Luke has been taking baths frequently when John comes home. He has been ok with us just asking if Dad can come in. That was the exact scene today. Luke had been in the tub, given permission to enter, and I was trying to dress him. But something went terribly wrong for him.
The moment Luke heard my husband’s voice, he just started screaming, “Dad to go back; Dad to go back! Dad goes to work; Dad goes to work!” We tried having John leave so Luke could run out and greet him, but it was too late. He spiraled into a full meltdown of word repetition and crying and biting himself again. “Ride in a green Malibu! Red four-wheeler; red four-wheeler! Dad to go; dad to go! No school! Yellow bounce house; red four-wheeler! Dad to go! No chuch; no church!” It is so hard to watch. He is trying so hard to make sense of what is going on, but now he has no anchors to his day. Every day is the same, but enough different that he cannot ground himself to any kind of routine.
I suggested that we make a schedule so that he can see what to expect. He continued the
verbal stims, but clearly wanted to see a schedule, so we wrote down what needed to happen tonight and a couple things we know will happen tomorrow. Today, he only needed to put his pants on, eat the hamburger he requested, take his medicine and go to bed. He kind of calmed down, but still refused to put his pants on and come out of the bathroom. He started asking for rides. We had just been out driving for over an hour, so I was not keen on going for another ride at the moment. He asked, “Go for a ride in the Ford Taurus?” That is at least a vehicle we own, so I was like, “How about if we find a picture of a Ford Taurus?” I googled 1998 White Ford Taurus and showed him the
pictures of “our car.” He thought that was hilarious! He started giggling and popped right up and put his pants on then greeted Dad as if nothing had ever been a problem. He even sat at the table to eat dinner with Bahr. The rough evening quickly turned sweet and he went to bed more peacefully than he has in a long time.
I hope he rests well because tomorrow is our first day of online school, and I am dubiously hopeful that Luke will participate. We are expecting a video call from his Behavior Interventionist at 9:30, and I hope that man can work some sort of magic to help Luke understand all of this. The days forward are uncharted for all of us. I am sure that we will have our share of meltdowns, even though I have no intention of pushing Luke too hard on the academic pages. If we can get through all of the online therapies – speech, occupational, and physcial therapy -anything above that will just be icing on the cake! Meltdowns happen, but maybe that picture of the 1998 Ford Taurus will continue to save us. Here’s to hoping!