The New Normal? How working women are coping with the rising number of children with special needs
Diabetes. Dyslexia. Depression. Autism. ADHD. Anxiety. Addiction.
If you believe the news, it’s clear that more and more of our kids are struggling with some sort of significant challenge these days. Whether the incidence is actually increasing or our ability to detect these conditions is just getting better, the point is that the rise of kids with special needs is putting a whole new level of stress on working parents, especially working moms who more often than not carry the majority of responsibility for child care.
Why is this on my mind so much now? Two reasons.
First, after years of being a parent who literally boasted she had one of the “easiest” children in the world, I learned that looks can be deceiving. Indeed, we recently discovered that our now 15-year-old is suffering from several chronic diseases, mostly tied to a rare, incurable, genetic connective tissue disorder called Ehlers Danlos Syndrome (commonly known as EDS). I’m not going to lie. It’s been brutal. Hospitals, surgery, and more unpleasant tests than most adults I know could bear. And then finally answers… but none of them great. It’s taken a real toll – on my daughter, on my marriage, on my career and on our savings.
And while more than ever I consider being a mom the most important and best “job” I’ve ever had, it is a lot harder now than it used to be. Indeed, it can be down-right exhausting in ways that no work project – not even career defining-projects like Russian privatization or the takeover of a British icon – ever was. So, I have a new-found respect for EVERY mom (and dad) out there who is facing a similar situation. And double hats off to those who are facing these challenges alone and without the financial resources I’ve been fortunate to accumulate.
That’s the first reason this is on my mind. The second reason is that as I’ve opened up about our situation, I’ve been truly shocked to learn how many others are similarly challenged. Women (and men) I’ve known for decades have shared, often quietly over coffee, how their child struggled with anorexia or addiction, was suicidal, or just went through a “really tough patch”. And I never knew. I never even suspected! Which also meant that I never supported them. Instead, they struggled, often alone, often in silence.
So, I am writing this piece for all the parents out there who have children with special needs - and for all of those who employ them or work with them. This is what we need every one of these moms (and dads) to remember:
1) You are a rock star.
No matter what your child may yell at you on any given day or how bad you look at the grocery store or how many times you forget to sign that school permission slip, know this above all else: You are a rock star. Period. End of story. And don’t ever forget it.
2) You don’t need to struggle alone or in silence.
Even if you don’t have a supportive spouse or a close-knit family, you don’t have to go through this alone. There are way more of us out there than you might think. CEOs. Teachers. Architects. Lawyers. And there are amazing, often free, support groups for virtually every disease or condition. Having a child who is struggling is tough enough. You don’t have to cope with it alone or be ashamed to speak about it. Of course, you may not choose (for your sake or your child’s) to shout it from every rooftop. But, there are certainly more places and times to share than people utilize today. And for those with chronic or genetic conditions like EDS - which is often called an “invisible disease” since you may not be able to tell if someone has it - you may find a great sense of comfort and support by just putting it out there and no longer trying to pretend things are “normal” at home. Indeed, even now, as I ramp back up my workload following my daughter’s diagnosis, I am openly telling potential employers and/or clients about my situation. And I quickly follow that up by letting them know that the positives for them include the fact that I am:
incredibly loyal to those who choose to work with me
working even harder and smarter because my employment and my free time mean more to me now than they ever did before
even more embracing of diverse work teams and flexible workplace scenarios
really good at not sweating the small stuff - because I can see it for what it truly is: small stuff. So, I’m not easily distracted from the big picture of why I am there and what outcome(s) we are collectively trying to achieve.
3) Practice self-care too.
A third key message I want all those parents of children with special needs to hear is this: while you are probably sad and frustrated by not being able to “fix” your child’s issues, there are things you can – and must - do to help yourself cope and stay strong. I don’t care whether that’s wallowing for a bit; not getting off the couch all day; yelling at the heavens; eating pints of Ben & Jerry’s; getting a massage; going to yoga; or to just having a really good cry. I have used each and every one of these coping mechanisms during the past few years – the crying one quite frequently in fact. But I’ve learned to say: Who cares?! If that’s what it takes to just keep putting one foot in front of the other, at work and at home, so be it. Don’t beat yourself up about it. And don’t let others make you feel guilty either. Practice self-care because you can’t help others if you haven’t helped yourself. There is a reason the flight safety instructions say, “Put your oxygen mask on first before helping others”. Some days your own needs just have to be at the top of your “to-do” list.
4) Stay in the workforce.
I know how hard it can be – and how appealing it may seem to just quit. But, don’t drop completely out of the workforce if you can possibly avoid it. Scale back. Modify. Hire more support at home if you can afford it. But try to stay in the workforce. Why? Because I have found work to be one of the most positive ways to take my mind off all the other things I can’t change. And if your child’s struggles turn out to temporary versus lifelong, you’ll find it much easier to ramp back up if you never fully left.
For example, last year I had to scale way back on my consulting and coaching practice. I just couldn’t keep going at the pace I had been and support my daughter at that critical juncture. Thankfully, one of my new clients was the female founder of a travel tech firm. I told her the truth and she was still willing to take a chance on me - even though I was new to the industry and far from a tech guru. In fact, she asked me to become the chief commercial officer and help her scale the business. I’m working for equity not cash – so I’m “cheap” for her, and of course that helps. But it has proved to be a fabulous learning experience for me as well, all the while giving me the flexibility I needed to run to school or the emergency room if necessary. So, I never dropped out - I just majorly modified my work situation. That can be priceless – mentally and financially - in situations like these.
So, that’s my advice. Hopefully it is helpful.
I want to close by saying that you are all heroes in my book – employees and employers both. It’s hard enough just to do a great job at work and be a good parent. Having a child with special needs can take things to a whole new level. So, while you may never receive the accolades you deserve for the work you are doing on behalf of your children (and organizations), I want you to know you are respected and admired by the thousands and thousands of us out there who are doing our best just like you. Keep it up, and, share your story if you can. It’s been so helpful for me to know that I am not the only “Zebra mom” out there. (EDSers are frequently referred to as Zebras). Together we can fight the stigma and support each other through the tough times.
Perry Yeatman is the CEO of Your Career • Your Terms® a company dedicated to helping women build the careers and lives of their dreams - from launching on the right trajectory; to surviving the mid-career marathon; to thriving within the executive ranks. Perry’s unique approach combines a deep understanding and passion for career advancement with decades of real world experience as a global business executive, C-suite consultant and award-winning author. This enables her to achieve transformational results for her clients. To learn more about what she can do for you, go to www.yourcareeryourterms.com or contact Perry at Perry@yourcareeryourterms.com.