AWMoms: Autism Awareness Month – On To Plan C

This is a guest post submitted to AWMoms from Sue Sunderman, Global Marketing & Guest Experience Analyst, The Hershey Company

My previous AW story as a mom of a daughter on the autism spectrum closed with:

I now work full time for an organization that values work-life balance and offers flexible work hours. I am challenged and enjoy what I do. I am the mom of a successful young woman who is thriving in Manhattan and a special young woman who continues to thrive in our home and community. My story is less of an example of successfully returning to the workplace and resuming a promising career, but more a story of successfully creating, accepting, and thriving with “Plan B”. 

Since that story, the pandemic brought us to “Plan C”.  (Spoiler alert- it hasn’t been horrible.)

In the Spring of 2020, our 21-year-old daughter Natalie was finishing her senior year of high school at The Vista School.  She is a happy, fun, feisty redhead.  She is also non-verbal with severe autism and an intellectual disability and requires one-to-one support at all times.  We had been involved in Transition Planning for her post-21 life upon graduation since she was 14.  We had enrolled her for adult services funding, established legal guardianship, consulted with her behavioral therapy staff to evaluate multiple models of adult day programs and planned a special graduation celebration to honor the many people who helped us through her school years.  The best-laid plans…

When the pandemic hit a few months before graduation our plans began to unravel as we found ourselves quarantined at home in PA. We were fortunate that my husband and I were able to work remotely from home and Natalie’s caregivers were able to pick up the additional school day hours in our home. Initially, Natalie was intrigued by our presence in the house without our typical weekend activities.  She roamed from room to room, checking in on our status.  She was mildly amused by the faces on the Zoom calls who would call her name and wave. We were pleasantly surprised that she learned to ignore us when we were at our desks. Remote learning sessions from her school were a non-starter and simply a confusing annoyance for her. They were essentially additional meetings for us, which became a strain and we canceled most of them.

An underlying medical condition makes Natalie more vulnerable to the virus. Initially, I was terrified at the thought of her ending up hospitalized and alone. I also feared what would happen if anyone in our family contracted the virus, knowing we would lose all caregivers at our time of greatest need.  We created contingency plans and backup plans with family and friends and neighbors. Luckily, we have all been safe and our daughter has a strong “village”.

Natalie’s graduation “ceremony” was modified to a drive-by parade of 20+ teachers and staff from her school.  We were able to say Thank You from our front yard; socially distanced and wearing masks. The culmination of all those years of incredible support and guidance was not the thoughtful “Thank You” celebration we had planned.  Surprisingly, it was very moving; her school team certainly felt the love and gratitude from our family.

Natalie didn’t understand what was happening and can’t comprehend that she will not have her school or those phenomenal people in her life going forward.  Her new adult day program was drastically modified. Since she is not able to tolerate a face mask (or hat or gloves), her community outings are limited to walks in the neighborhood and car rides.  She has not entered a grocery store or fast-food restaurant in over a year.  She continues to practice her daily living skills in home, but her social interactions have been very limited.

We continue tele-health appointments with her behavior therapist and psychiatrist.  Natalie has slipped in some key skill areas and exhibits some challenging new behaviors.  One Covid-19 silver lining is that we are home to monitor and assist with new staff and transitions. Natalie is scheduled to receive her first dose of the vaccine on April 1.  We are hopeful that she will regain skills and baseline behaviors as her world reopens in the next few months.