Did you know that forty percent of special needs parents quit the workforce to care for their children? I certainly didn’t—until it happened to me.
When my daughter was two, she was diagnosed with autism. At around the same time, she became aggressive and a danger to herself. To my dismay, I discovered that it would take weeks to get her into a clinic that could care for her safely and correctly. In the meantime, I had limited childcare options and wasn’t eligible for federally-mandated medical leave. My supervisor let me work from home for a little while but then lost patience with my family situation. She made me feel like I had to choose between my daughter’s welfare and my career. So finally, I did the only thing that made sense. I quit the job I loved.
It didn’t have to be this way. I know this because my husband’s supervisors treated our family’s situation very differently. When our daughter was going through her aggressive phase, they encouraged him to take time off to help with her. When she needed brain surgery, they supported his decision to use as much sick leave as necessary. When we found out she had been misdiagnosed with autism and actually had a rare, neurodevelopmental disorder that was going to worsen with time, they granted him the ability to work completely from home.
Unlike me, my husband didn’t have to choose between his job and his child or between his deadlines and his daughter’s health and safety. He was allowed to have both. Because of this, he feels grateful toward his supervisors and loyal toward his company. He’s unlikely to leave his job any time soon, if ever.
When employees leave a job to care for a neurodiverse or disabled child, no one wins. Families take large financial hits and companies lose crucial assets. Employees take with them important institutional knowledge and years of experience. Worse, though, is the fact that these people often leave with the impression they aren’t valued or respected, that anyone with caregiving responsibilities or family issues isn’t important to the company. This can weaken morale for an entire work team.
In many cases, all of this could have been avoided if the right person had been there to encourage, support, and advocate for the employee in question. People who supervise special needs parents hold real positions of power. They have the chance to help a family navigate a difficult and complex situation or to make their employee a workplace statistic. Based on my family’s experiences, I have some advice for anyone who occupies this important role.
When possible, provide employees with a flexible schedule and work environment. Children with developmental delays and disabilities often have behavioral, educational, and medical needs that can only be met during the workday. Their parents have to attend a multitude of medical appointments, therapy sessions, and special education meetings. If these employees have the opportunity to work from home, on the go, or during the evening or weekend, they can both help their children and get their work done on time.
Understand that childcare options can be limited and complicated. Not everyone can care for a special needs child. Often, parents can only entrust their son or daughter to someone trained to deal with particular medical or behavioral issues. This type of childcare can be difficult to find, complicated to arrange, and expensive. This is another reason why special needs parents benefit from flexible workplace options.
Don’t make parents choose between their children and their job. Stay up-to-date on your employee’s home situation so you don’t ask someone to do something that isn’t in their child’s best interest. Parents want very much to fulfill all of their work duties, but when it comes to a child who is medically fragile or a danger to themselves or others, it’s important to put the family first. Don’t ask employees to attend a large social event that might expose a vulnerable child to germs or to leave a son or daughter without proper care or supervision. If there is a workaround for that company picnic or business trip, it’s important to find it.
Value the skills special needs parent employees bring to the table. Even though parents of special needs children sometimes require extra accommodations, these employees also have many important skills to offer. They have become used to juggling busy calendars, prioritizing tasks, advocating for others, and overcoming challenges. They are also likely to value people for their differences and not shy away from difficult conversations. Given the right work environment, these employees can accomplish wonderful things. Make sure they know that you appreciate them and the ways in which they contribute to your team.
Help employees advocate for better supports and services. If your workplace doesn’t provide adequate coverage for special needs parents, don’t simply shrug your shoulders and apologize. Talk to an HR rep. Explain that your company will lose valuable employees—not to mention gain a reputation for discrimination—if you don’t change your policies. If you’re willing, you could even help your employee advocate for their family outside the workplace too. Some states have a waitlist for disability services that can be up to a decade long.
Whenever I return to the workforce, my hope is that I’ll have a supervisor who puts into practice some or all of these recommendations. I know that a person like this might not be easy to find. I also know that my job hunt isn’t going to look like it once did. I won’t just need to think about salary, hours, and vacation leave. I’ll also have to consider if a company has family-friendly policies, an inclusive atmosphere, and people who support employees like me. In an ideal world, I’ll even be able to locate something far better—a workplace where my experiences as a special needs parent are viewed as an asset rather than a drawback.
What has your experience in the workplace been like? Have you had supportive supervisors, or have you had to take a step away from your career to care for your child? Let me know in the comments below.