Article

Frontline Initiative: Supporting Healthy Relationships

Could respite be the good kind of selfishness you need?

Author(s)

Victoria Schaefer is a parent to an adult son with developmental disabilities, and she lives in Texas. She can be reached at victoriaschaefer@sbcglobal.net

portrait of Victoria Schaefer's with her two sons and husband

My son, Harry, was diagnosed with a significant disability back in the year 2000. Our family entered a new world of unknowns. We relied on therapists, teachers, doctors, and other professionals to guide us to helpful resources. We needed knowledge for a different way of life. My first-born beautiful baby boy, with movie star hair, full pouty lips, and a pleasant disposition needed help with delayed development in speech and socialization, muscle tone, and coordination. He received an early diagnosis of autism at two years old. My naive thinking back then meant we would enroll in speech therapy, play groups, baby gyms, and occupational therapy to catch him up. With hard work he would no longer have the delay. Harry’s brother, Brent, was born exactly one year and six days after Harry. He threatened my plan. No matter how hard we worked, Brent passed Harry with typical development. This forced us to accept Harry’s disability. I did not know then how Brent was an answer to a prayer. Brent always helped Harry reach his next goal. He models age-appropriate behavior (although not always socially appropriate). He gives love and friendship that only best friends know and cherish.

By the time Harry turned three, Early Childhood Intervention (ECI) staff trained me how to find resources and advocate for my son. I learned to not allow limitations on his development through perception, labels, or restrictive programming. By age three, ECI staff already had me looking toward Harry’s transition planning, considering employment, housing, community access, and how planning yields success. I assumed, “Of course, Harry can live with us for the rest of his life.” Harry’s ECI therapist challenged, “Harry may NOT want to live with you for the rest of his life. Have you thought of that?” From that moment, our family has worked to provide Harry with his own life, activities, and friends. We want opportunities to work toward independence in safe environments and many community activities. We want to keep one step ahead to prepare him for success.

Early in our family’s journey, I valued the idea of taking care of myself to better take care of my family. Putting in the work to build supports and trust in people can often be uncomfortable. It is not always easy to feel vulnerable. Accessing opportunities for respite has brought support for us as his family. Respite provides opportunities for primary caregivers to have short periods of time away from their loved one. Respite has led to greater independence and development of skills, including social skills, for Harry. Respite opportunities supported each member of our family. I would like to share examples and how they supported our relationships.

Hiring childcare

When my boys were young, we lived close to family. There was no need to access childcare outside our family. Later on, when we no longer lived close to family we hired a childcare provider for my children. We did this so that my husband and I could spend time together for the benefit of our marriage. We learned to give instructions based on Harry’s strengths and needs. It gave Brent an opportunity to show leadership and learn how to champion Harry. It was a chance for our family to assess victories and challenges. While there was a time, I didn’t feel I could trust strangers to care for Harry because of his complex disability, I learned to let go. I learned to allow gratitude to overcome worry.

Sleepovers with an autism-specific organization

Sleepovers with an autism-specific organization challenged me to trust others to support Harry. Harry attended overnight gym events with his brother on the campus of the University of Texas. My husband and I stayed in a nearby hotel for a date night. Harry brought home a list of skills to work on and fun memories. It is impossible to accurately convey Harry’s pride in doing something independently. This also helped the bond between brothers grow with these paired sibling activities.

Texas Elk’s Summer Camp

Applying and gaining acceptance into a week-long Texas Elk’s Summer Camp highlighted Harry’s progress toward functional independence. Harry had to independently shower and dress, and demonstrate socially acceptable behavior for group living. Mastering these skills gave our family a goal to support Harry. He attended for three years before aging out. He won the Jolly Camper Award, Most Easygoing Camper Award, and more.

Finding myself a full-time job

When Harry reached high school, I decided to take on a full-time job. I carefully examined daily living skills that Harry had achieved and skills that he needed to safely and independently complete his daily routines. We installed a comprehensive security system with cameras and door alarms. Harry quickly learned a routine of waking to an alarm, dressing, eating breakfast, and self-medicating. He learned to wait for his bus to and from school.

Hiring a DSP

As Harry graduated high school and entered 18+ programming, I did not realize he would only receive 10 hours of school services a week. Panic set in. I discerned whether I could keep the job I loved, or if I would have to quit to become a full-time caregiver for Harry. This was something none of us wanted. Our family worked quickly to find a solution. With the help of Medicaid and SSI, we hired Direct Support Professionals (DSPs). The DSPs are community access attendants. They support Harry with companionship and assistance. They provide support for Harry while allowing me to keep working full-time. They help Harry live a life of independence.

Respite camp

Every month for more than a year, Harry has attended a respite camp called Camp Drive. He loves Camp Drive. He glows with the pride of independence from drop-off to pick-up. We see visible progress in how Harry carefully prepares his clothes and his bags for camp. He packs his favorites knowing he will be gone all weekend. He impresses me with forward thinking about his personal items and novelties for the camp theme that month. Camp Drive has given my husband and me empty-nest weekends since Brent now lives at college. Camp Drive is a gift we enjoy after years of hard work from each member of our family. We never expected to see the increases in skills and independence that Harry has gained by attending Camp Drive’s respite. These opportunities have been important for all of us.

My advice to other parents on a similar journey is to take time for self-care and respite, even if you think it “selfish.” My thanks to Direct Support Professionals who make respite possible. Without you we would not be able to take the breaks that we need as a family.

We appreciate and value the lessons and support provided by everyone who supported us in big and small ways. My advice to other parents on a similar journey is to take time for self-care and respite, even if you think it “selfish.” My thanks to Direct Support Professionals who make respite possible. Without you we would not be able to take the breaks that we need as a family. The benefits that we receive from respite are important for everyone.