Pandemic. Crisis. Disaster. These words dance across the TV screen all day. Gently, it stinks. I’ve tried to sugar coat it to keep myself sane: “people are reconnecting with nature”, “people are being forced to slow down”, “all of those meetings really could have been emails”. It gets me through the day, keeps me smiling. But I realize when I get home from work, in moments of silence, I find this atrocious dark cloud come in and completely engulf me. I get mad when the door sticks, I can’t motivate myself to vacuum, to do dishes, I blow up when the sound won’t work on the TV, I need to go for a 10-mile run when I can’t solve my mom’s ‘Zoom’ questions. Simply put, I’m a mess.
I’m a mess first, because life has been disrupted. Because I’m scared. Because the numbers on the TV are going up faster than I can blink. Because it feels like it’s just a matter of time.
But really, I’m a mess because of what I can’t do. I work at a residential school for children with Autism. More precisely, I work in families’ homes with their newly diagnosed toddlers to help them gain important skills that typical children their age are mastering. We have a Center in Southborough, MA that provides services for children age 18 months to 22 years. Almost half our students live in one of our group homes 24 hours a day, 7 days a week, 365 days a year. They don’t have the choice to just go home. They live with us to maintain safety both for them and their family. The past few weeks, I’ve lost so much sleep enveloped in that black cloud.
For good reason, our in-home and day services have been suspended. I know that must have been a difficult call for NECC’s leadership, but absolutely necessary to maintain social distance and reduce the potential for cross-contamination for students and staff. However, research shows that the earlier a child with autism receives services (and applied behavior analysis relies on structured, consistent reinforcement), the better the prognosis for increased independence in the future.
This is not to say that the toddlers with whom we have been working will lose the skills we have taught them. A significant part of our in-home program involves working diligently with the parents to ensure they are reinforcing the skills in a consistent manner. I don’t believe that this disruption will have a detrimental effect on the children we serve. I do, however have a 20-pound weight crushing my heart when I think about our students and their families.
When I was told our sessions were canceled, I cried. I cried for the parents who put their complete faith and hope in us and the services we provide. I cried for the students who will start realizing that it’s more than just a vacation week, but aren’t able to ask why. And I cried mostly for the loss of teaching opportunities at such a critical time.
Now, back to our wonderful residential students. I realized the sadness about my own life’s disruptions is nothing compared to the children and young adults in our residential program. Yes, my schedule has changed – a minor inconvenience – but for the kids in our residential program, everything is different.
The teachers are phenomenal at doing their best to maintain a sense of normalcy, but much of their daily routine has been upended. Typically, Monday through Saturday (and sometimes on Sundays) our students wake up, complete their morning routine, get in the school van, make the trip to school at NECC Southborough where they work on social skills, academics, speech and language therapy, physical and occupational therapy, vocational training and art and music enrichment. At 3:00 pm, they get back in the vans and return to the house, perform additional tasks related to independent living and self-care as well as homework, complete their evening routine, and go to sleep. Now, suddenly, a large part of their day (their routine) is gone. No van, no school, no specials, just the house.
Think about how unsettling this social distancing and quarantine has been for you and how you’ve adapted. You may watch the news, connect with friends and families on Facebook, text your friends, talk with your parents, children, loved ones, housemates, ask questions, get answers, think about more questions, google them, find answers, and then video chat with your friends again.
The magnitude of what is going on in the world right now is something nobody, not a single person has ever experienced before. And, to some extent, I don’t think a lot of us are able to fully wrap our heads around the enormity of the situation. But we can get close. For the students in our residential program, the answers are not so easily attainable.
Some of our students can ask: “why are we having so many house days” to which we might be able to provide a social story about people getting sick and explaining that staying at the house is the best way to keep healthy. Other students may not appear to care that we have not transitioned to and from the school in over two weeks. And some students are just plain bummed out. We might see an increase in challenging behavior or an increase in crying with no clear environmental trigger. And you know what, I get it. I get that you’re mad. I get that you’re confused. That you can’t ask questions. That you can’t understand my answers. I want to crawl inside your head and make all of this not so confusing, so weird, so uncomfortable. I want to make life ‘normal’ again for you. I want to go back, too. But I can’t.
Many of the students in our residential programs either go home for a day or two on the weekends or have family members come visit during the week. Due to the fact that there are up to 9 students living in a house and up to 9 staff at any given time, parent visits have been temporarily suspended (again, everything is for the safety of the students). I think about how hard it is for me to not do my weekly dinner with my parents. How it’s something I look forward to during the week. And then I think of our students. I hear the students talk about their parents. I feel a piece of my heart break off every time I hear “where’s mommy and daddy”. I want to explain. I want to tell you that mommy and daddy would be here if they could. That they would walk to the ends of the earth if it meant they could come take you out to dinner. I want to tell you. I want you to understand. I want to tell you they’ll be here soon. But I can’t.
And finally, I want the parents to know that their children are being so well loved. I want to get on the phone and call each and every one. To tell them how the teachers light up when they walk in the room and see their child. How their child is laughing and dancing and singing and playing. How the every teacher that walks through the doors could not imagine being anywhere else. I want to tell them that they don’t need to worry. That I cannot even begin to understand the immense sadness of not being able to be with your child at a time like this. I want them to know that it is okay to be sad, to be scared, to be overwhelmed. But more than anything, I want them to know that their child is being loved by some of the most incredible people in the world. But I can’t tell them all.
There are so many things I can’t do, can’t fix. What I can do is continue to love these children and young adults unconditionally. I can fill their days with joy. I can be the light that enters the home. I can try to maintain a sense of calm, compassion, and normalcy. I can, and I will.
For all of the horrible, awful things going on in the world. When I step into that residence every morning, I forget what is going on outside. I find myself completely surrounded by love and happiness. It’s like walking into a sanctuary in the middle of a storm.
About The New England Center for Children
The New England Center for Children® (NECC®) is an award-winning autism education center and research institute. Our community of teachers, researchers, and clinicians have transformed the lives of thousands of children with autism worldwide through education, research, and technology. The Center provides comprehensive services to maximize independence: home-based, day, and residential programs, partner classrooms in public school systems, consulting services, the ACE® ABA Software System (www.acenecc.org), teacher professional development, and research on educational best practices.
NECC is committed to staff professional development, partnering with local colleges to provide on-site graduate training and degrees at little to no cost to the NECC teacher. The result is a growing pool of exceptional teachers trained in best-in-class methodologies, whether they continue their careers at NECC or move on to public schools or private agencies. The New England Center for Children is based in Southborough, MA, and operates a center in Abu Dhabi, UAE. Learn more at www.necc.org.