Q and A with Michele Gay
I overheard a conversation the other day in the grocery store (from a distance of course) where one well-intended shopper said to another “We’re all in the same boat.” The other shopper replied, “I don’t think so. Maybe the same sea, but way different boats.”
One of our favorite team members, Susan Parziale, has been especially on my mind this month. It’s April and this month is special to both of our families because it’s Autism Awareness Month, time to celebrate our children and families, and so many inspiring individuals with Autism. Having daughters with Autism is what brought us together years ago.
Sue and I sat down recently to check in and talk about the unique challenges in her “boat.”
MG: What’s going on in your world right now?
SP: Well, “my world” is now “my house!” Here in Massachusetts, we have been in full “stay home” since the beginning of March. Our daughter attends a full day, year-round school to meet her needs. Under normal circumstances, any interruption to school is a challenge for us, so as you know, this long-term shutdown has hit us especially hard. Like most children and adults with Autism, our daughter thrives on daily structure and consistency. Services after school for life skills, swimming and outings in the community are also essential to her progress and stability. Of course, none of those things are happening now and her daily routines have been upended. We are seeing difficult behaviors–that we had conquered in the past–rear up again. Normally, school and support staff would do a home visit to assist, but obviously that’s just not possible now.
MG: So what kind of support can you get from school right now? What does schooling from home look like for you and your family?
SP: We start each morning with a parent/teacher consult via Zoom to discuss a daily program. Because my daughter is a teen, we are focusing on life skills (e.g., laundry, trash, making the bed, preparing small meals, etc.). There is sure a lot of time to reinforce those skills at home right now! A few times a week have a 1:1 Zoom call with one of her teachers to work on a task with her iPad program L.A.M.P. (Language Acquisition through Motor Planning). We are lucky to be able to do at least some programming this way. I am grateful that the activities are still set by the school staff, but obviously I have to work on all of the programming with my daughter throughout the day. This means taking turns with my husband to do our own work–often at odd hours!
MG: What’s been an unexpected benefit?
SP: I am an organized person by nature so staying on task and focused has come in handy with keeping a daily schedule for all of us. The family walks have been a nice benefit too. Like most families, we only had time on the weekends for walks and weather was always a factor since we live in the Northeast. Before COVID-19, we would have never gone for a walk in cold
weather, now we do not bat an eye because it is an essential part of our day—and our sanity!
MG: What’s been the hardest?
SP: The hardest part is the Autism meltdowns. We have created a safe calm-down space where our daughter is free to go for breaks, but I feel so helpless in soothing her through these. We just have to ride it out, but it is incredibly stressful as a parent. She also has been exhibiting perseverating behaviors [repeatedly asking] for certain places and people. It is very difficult for her to understand that we can’t go to these places and see these people that are normally part of her life.
MG: How have you had to adjust expectations for yourself and your family to make this work?
SP: We get up at the same time each day; start home school and then take our afternoon walk. It’s a little like Groundhog day for us! But we know that it’s just what we need to do for our daughter. We give her a daily printed schedule each morning to show her the plan. We try our best to keep to this schedule but have learned that we have to roll with the unexpected. I’ve also learned to give her breaks whenever she asks. It’s a give and take.
MG: How are you taking care of yourself so that you can be the best version of yourself for your family?
SP: To deal with stress, I exercise each day with online classes by my local gym, I have Zoom meetings with other parents of children with Autism and we discuss our challenges and give suggestions to each other. I also call my family each day to check on how they are doing. And my husband and I are watching a lot of comedies!
MG: I know you are still working out! I can tell—even on Zoom. I’m so glad you are finding ways to stay connected with other parents too. The support of your “Autism tribe” can be literally lifesaving. It makes such a difference. You’re one of the most positive, forward-thinking people I know. Before I let you go, will you share what gives you hope for the future?
SP: Now that we are 30+ days in with our focus on life skills and home schooling, I find I’m more confident that I can handle teaching my daughter all sorts of skills that she will need when entering adulthood. I guess I am more capable than I thought. For lots of parents supporting a child with Autism, the transition to adulthood is daunting to say the least. Somehow, I feel a little more ready to face the challenge…An unexpected silver lining in all of this.