Posted on September 16, 2021
This month’s guest blog is written by Janice Mackel, Julia’s Mother.
September 12-18 has been designated 2021 Direct Support Professional Recognition Week and I can’t think of a better time to acknowledge this dedicated, innovative workforce that is the heart and soul of supports for people with disabilities.
As the mother of a daughter with autism, I am inspired daily by their patience, courage and commitment, and never more so than during this relentless pandemic.
My daughter, Julia Quarles, will soon turn 40. Back in the 80s when she was born, “autism” was not yet a diagnosis. She was tested for any of number of disabilities, including echolalia, characterized by repetitive speech and now often associated with children on the autism spectrum.
I was then in my late 20s and in a total uproar trying to find out everything I could to help her. This was before the internet age and I remember finding only one book in the library that actually addressed our situation.
As a young girl, Julia had a knack for playing video games like Nintendo and Sega. Her five cousins would come over to the house to play with her and we couldn’t understand why she was always beating them!
Her verbal skills are limited to short phrases or one word, but she loves to sing and dance and has always been drawn to music. She was blessed with the gift of memory and can recognize songs after only two beats.
At the age of five, Julia entered a school for children with special needs and she remained there until 2003 when she graduated at the age of 21.
From there we discovered Change, Inc. – now part of Penn-Mar – where she has spent the last 18 years in their vocational program.
I am overwhelmingly thankful for the extraordinary DSPs who have worked with my daughter providing her with structure, motivation, family values and skills she can use both at home and outside in the community.
I started working for the Federal Government in the postal service when Julia was only one, and officially retired on her birthday this past March after nearly 38 years on the job.
Over the years, I would take her to the van that transported her to her Day Program and never worry for a minute about her well-being. I had so much confidence in the dedicated DSPs who were looking after her while I was at work.
However, with the pandemic, I discovered a newfound appreciation for all that the DSPs do and realized that there was a lot more to it than I might have imagined.
With a 90-year old mother to care for as well as Julia, we could never have made it through the disruption without the DSPs who supported us virtually with one-on-one sessions involving reading, art, exercise and Julia’s favorite activity, Karaoke.
I am so grateful to Penn-Mar and her DSPs for the innovative virtual classes that keep my daughter engaged and connected, Monday through Friday.
We can never forget that the DSPs who show up for work every day during the pandemic also have families and personal responsibilities of their own.
Yet they are always here for our loved ones and us and during these times of uncertainty continue to provide the support and care that is so important to the growth of people with disabilities.
These exceptional, essential employees deserve all the praise and support we can give them during their special week and throughout the year.