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Employees India & Anderson Mack of Dominion Energy South Carolina share their experience.
This article is about:
Caring for children with autism
How to help caregivers
As the parents of three amazing children ages 12, 9, and 5, there’s never a dull moment in our home, but raising a child with special needs adds a new dimension of both excitement and challenges. After our son, Andy, was diagnosed with Down syndrome, we focused on understanding and rising to meet all the challenges associated with his unique physical needs and speech delays.
As Andy got older, he seemed to be regressing. We knew there must be more contributing to his developmental delays. A specialized pediatrician confirmed our suspicions, diagnosing our nonverbal, energetic son with Autism Spectrum Disorder (ASD). In that moment, we embarked on the journey of caring for a child with a dual diagnosis in a world full of unknowns.
Until Andy’s diagnosis, we knew very little about autism. We’d heard that it was a developmental disorder affecting 1 out of 88 children. Today, 1 in 54 children in the US will be diagnosed. While autism is becoming more prevalent, so little is said about the gifts and talents that often accompany it.
A: Over the years, we’ve discovered that people on the spectrum have an acute attention to detail. They notice and focus on small specifics that many of us overlook. They also excel at repetitive tasks—Andy doesn’t mind monotonous chores or actions. Even when he’s watching his favorite movie, Pixar's Cars, it doesn’t bother him to watch a scene over and over. He will happily press the 10-second rewind button at the exact same time repeatedly.
When we think about Andy, it’s apparent to us that he is a very persistent, visual learner. He may not always get things right on the first try, but he won’t quit if he’s highly motivated. For instance, he loves Oreos and will overindulge every chance he gets. The family has become very creative in finding new places to hide his sweet treats. One day, Andy figured out that if he could climb high enough to reach the top cabinets, he could get the cookies. After several attempts, he realized that he could use the stool to climb onto the chair and then use the chair to climb onto the kitchen counter.
This may be common for the average toddler, but for Andy this was no small feat. When we caught Andy happily eating more than his fair share of Oreos, how could we possibly deny him the reward for his determination?
A: With time, we’ve learned to be more open-minded and very patient. Instead of worrying because he was eating cookies without permission, we celebrated his critical thinking and would later address the safety issue. Nearly half of individuals with autism aren’t safety conscious. He didn’t consider the possibility of falling and if he did, he has no way of expressing that to us.
The best support you can provide an individual with autism is to show respect, compassion and understanding, realizing that they see things from a different perspective.
Also, extend that same grace to the caregivers. We appreciate when our work family and friends seek understanding by having honest conversations with us. This is when we can begin to build a rapport and transition from awareness to allyship.
We find extra support in DiverseAbility, an employee resource group at work. Communities like these help us come to work as our authentic selves and celebrate differences and perspectives.
A: RESPITE. For many years, we didn’t think of ourselves as caregivers. We felt, as parents, it was our role to meet Andy’s needs even if that meant neglecting our own. We rarely asked others for help, eventually learning the hard way that respite is critical.
We encourage all caregivers to seek out respite services in their local area and, whenever possible, petition legislators to support decisions and policymaking that provide services for people with disabilities and their caregivers.
A: It’s a world of unknowns. In our profession, we are wired to be solution-oriented. If there’s a problem, we want to fix it. Andy has taught us that he’s not a problem. Our way of thinking, and sometimes our approach, is the problem.
No therapy is a one size fits all. We now use our voice to educate others and advocate for Andy and individuals who are differently abled. We encourage people to tailor their expectations based on Andy’s capabilities.
A: Just because an individual is approved for therapy, services, or support does not mean that they are getting the help that they need. One of our biggest challenges is waiting for Andy to get an Applied Behavior Analysis therapist assigned to him. While he’s been approved for these services for years, due to limited resources in our area, he has yet to receive them.
We also want to emphasize that the caregivers need support, too. Thankfully, we’ve received continual support from our leadership at work and our company continues to invest in and promote diversity and inclusion.
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