I often describe our family as “unique,” but in so many ways we are just like many other families. As the mother of a son and daughter, I had to juggle career and family when David and Kara were born, so I put my job on hold and made them my first priority.
I have taken my children to the playground to interact with their peers. Worked with school systems to see that they received the best education possible. Marveled at my daughter’s maturity from a little blonde girl in pigtails to a lovely young woman. And watched with pride as my son found a job he loved, surrounded by friends and co-workers who cared for him.
But what makes our family truly unique is the fact that David and Kara were both born with developmental disabilities.
Early on we discovered that David’s intellectual disabilities and motor skills issues were significant enough to interfere with his life and ability to be independent.
When our daughter Kara came along, she had an even more difficult time. She was experiencing regular seizures, creating behaviors that needed to be addressed. Because she was very active, we needed to have a firm grip on her at all times in order to ensure her safety.
I tried to give my children a very normal upbringing, taking them to pools, parks, and shopping malls. Both of them went to special schools for people with disabilities, but with the push for inclusion some 30 years ago, they eventually received special education at the neighborhood schools.
I came to find out that inclusion isn’t just about attending classes in a mainstream school. It’s also about going to a Walmart and having classmates recognize you and stopping to say “hello.” It seems like such a little thing but it was an experience my son had never had before.
Both of my children also attended classes at Towson University where they were assigned mentors who knew and cared for them. My son David even held a job at the University Recycling Center the four years he was in school and continued on the job for an additional four years.
Our family became aware of Penn-Mar through summer Day Camps, and both of our children have been living in Penn-Mar community homes since they were in their mid-twenties.
At first it was a great opportunity for them to make friends and attend Day Programs. But Penn-Mar is an ever-changing entity that continually expands its services, initially offering paid work opportunities in a workshop setting and now out in the community.
Prior to the pandemic, my son secured a job through Penn-Mar working at Schmuck Lumber Company in Hanover, Pa., unloading and stocking products, and interacting with his co-workers by participating in heart disease fundraising walks, parties and cook-outs. He can’t wait to return there.
Kara shares her community home with one of her old school chums and lives on the same street as her brother. She hasn’t had as many freedoms as David due to her disability but their Direct Support Professionals (DSPs) see to it that the siblings spend time together at parties and other special events.
Now that I am retired, I am committed to doing more for Penn-Mar and the people they support. I have attended several Zoom sessions to better understand and promote Penn-Mar’s Legacy Society to encourage people to include a gift to advance Penn-Mar’s mission in their will, trust, or retirement account.
I also participated in the recent Developmental Disabilities Awareness Day, advocating legislators to ensure that our DSPs receive the respect and compensation they so rightfully deserve for a career that is essential to the wellbeing of our children.
These DSPs are the same incredible people who encouraged my son to participate in the Polar Bear Plunge and send me pictures of my daughter joyfully dancing in her pajamas and singing karaoke.
I want to ensure that the professionals who are making a lovely life for my children — and for all people with disabilities — can make a wage they deserve and feel good about. It is essential to ensure the legacy of service that makes it possible for people with disabilities and their families to enjoy everything that life has to offer.