THIS EPISODE IS BROUGHT TO YOU BY:

Debra Isaacs Schafer is a long-established thought leader, subject-matter expert, advisor, coach, and speaker in the work/life integration arena with a core focus on supporting working parents with neurodiverse children. She also provides learning programs to companies and employees on the work/life realities of parents with exceptional caregiving needs, flexible work options, retention of working mothers, caregivers in the workplace, and creating a family-aligned culture.

Dr. Whitney: What do you think are the major pain points parents are feeling as they are trying to navigate integrating their work and personal lives, especially with kids with neurodivergence?

Debra: The first thing is securing the diagnosis. Oftentimes, parents want the diagnosis but the average wait time is 6-12 months. That’s a really long time for parents to wait around thinking something might be off before they can get an evaluation. And then the second would be wondering what they do once they get that diagnosis and really coming to terms with what their lives could look like now and how that plays out. They have to navigate special needs education, 504s and IEPs, documentation, and reports that they don’t understand. I help them navigate and understand all the ins and outs of that.

Dr. Whitney: Are there things that businesses, schools, and employers should be doing from a systemic level that can help these families?

Debra: We actually need to back it up to parents and they need to understand what advocacy is for their child. And those are the types of skills I teach them. So they can go into these meetings with schools with confidence and truly advocate for their child. In an ideal world, it would be more an equal playing field for both schools and parents rather than an adversarial relationship. 

On the flip side for employers, the number one issue is flexibility. Because these parents don’t just have to pick up their kids when they have a stomachache. They are caregiving under chaos and that requires more understanding and flexibility. But a lot of parents who have a neurodiverse child don’t actually disclose that to their employers, which means managers don’t understand why a mom left last week and has to do it again this week. So there has to be an environment and culture of open communication where parents feel comfortable sharing that type of information in the first place.

Dr. Whitney: I want to throw out something in that piece about navigating those types of meetings for parents. It IS overwhelming when you walk into something like that. You could be the CEO of a huge company and feel totally lost when you’re managing all of that. As a pediatrician, I want parents to know that your child’s doctor can be a huge help in that space. We can be advocates for you in those meetings. Or some practices have family support specialists whose job it is to help translate all of that and to help speak up for your child.

Talk to me about how parents get a functional assessment and who would be available to teach some of those “thinking skills” to kiddos that they need to learn as they are growing up in order to understand the nuances of certain situations?

Debra: Not everyone who has behavioral issues needs a functional behavioral assessment (FBA) but many do. The correct way to get an FBA is with a BCBA (board certified behavioral analyst) or Certified School Therapist who has extensive training in performing an FBA. And an FBA really needs to be done across environments, meaning at home, when the child gets off the bus, different times in the classroom. That report then gives us information on what we need to be doing in the school, what additional support is needed, or if a crisis intervention plan is needed for behavior.

Dr. Whitney: Here’s what I’m hearing as your main takeaway: As parents of neurodivergent children, we know there are ups and downs all the time. You can’t prevent any of that. It will continue to be challenging. But there are a lot of steps that you can take if you have the right information and the right advocacy behind you. That will make it so that you have a team behind you that understands you and your child more fully (like someone in your position, from a support through your employer, or from something like a care manager at a pediatrician’s office) and your child has the best chances possible of doing well in their current environment and as they transition to adulthood.

Debra: Absolutely. People who are neurodivergent in the workplace once had an advocate who helped them to the point that they’re at. So all of the working moms and dads who need support from their employers are working to raise up that next generation of employees.

You can find Debra at www.debraischafer.com

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