How to support the parent of a child with special needs

FILE – In this Monday, Oct. 24, 2016 file photo, Megan Krail helps a 4-year-old boy with Autism Spectrum Disorder practice trick-or-treating at The University…
FILE – In this Monday, Oct. 24, 2016 file photo, Megan Krail helps a 4-year-old boy with Autism Spectrum Disorder practice trick-or-treating at The University…
Image: AP Photo/LM Otero
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As a first-time parent it’s difficult to know if what you experience with your child is normal. We noticed that for the first few months our son wouldn’t sleep unless he was held, the constant activity, and the frequent crying episodes, but we figured this was par for the course or that we were doing something wrong.

I remember the first time that we truly realized that our son was different. We were at the Turtle Talk with Crush attraction at Disney World. During one particularly engaging segment, every child in the theater, approximately 100 kids, stood up and laughed at the screen. Our son buried his head in our laps.

Not long after this, he was kicked out of daycare. While everyone there liked him, the episodes of severe dysregulation were too much to handle.

At this point we took him in for testing, and he was quickly diagnosed with ADHD, at age 3. The diagnosis made sense. He had trouble sitting still, constantly moving even while having a conversation. We tried behavioral therapy and intervention for years with little effect. Eventually we started medication as well, which had a positive effect but wasn’t a panacea. While he was doing algebra and high school reading at age 7, socio-emotionally he was closer to an age-2 level. Not long after his seventh birthday, he was diagnosed with autism.

The diagnosis was refreshing because it gave us a new lens through which to understand his state of mind and his behavior, and we learned more and more about how he saw the world. But his unique presentation still posed significant challenges. In the past year, he has gone through three schools, and each time there was a slow, inexorable decline in physical regulation and behavior. Each time after a few months we were told we needed to find another place for him.

This has caused immense emotional strain at home, which has also carried over into work. I would be on edge from the time the bus picked him up until he was dropped off, dreading to get a call that he hit a teacher or ran away from class or that things had finally come to a head and his school had decided that they weren’t able to help him.

On one recent morning, I had just arrived in the office and put down my first coffee of the day, only to get a call from school saying he needed to be picked up. I grabbed my coffee and headed back to the train station.

That episode is emblematic of the uncertainty that can accompany something like autism in a child. One moment things may be well in hand, while the next you may be scrambling to deal with the latest crisis. Juggling work at the same time is a challenge to say the least. This randomness, this unpredictability, is immensely draining and depressing.

My experience has helped change the culture of my company. While we’ve always been flexible, building in the organizational resilience to continue moving forward when the CEO has to unexpectedly step out for half a day has been instrumental in our success. While this change was made out of necessity rather than planning on my part, looking at it now I think it has made us better.

Of course I use vacation days or personal days when I need to, but normally those are scheduled weeks in advance and everyone can plan for my absence. These crises are something different, and they require both my coworkers and I to be incredibly flexible.

If I need to leave an important meeting, I have many people who can jump in and take over. They also know that I’ll catch up with them over e-mail when I have a second or call them when I get a handle on things.

That has enabled me to focus entirely on my son and getting him on a path to success.

Building up this resiliency in my organization hasn’t just made things better for me. It’s very likely positive for everyone. If someone falls ill, or someone has to take a last-minute trip to a customer but doesn’t have wifi on their flight, others are left to cover for them. If you can handle the CEO needing to suddenly take off to deal with a family crisis, you can handle nearly any situation.

Beyond that resiliency, the outpouring of support I received at work gave me a huge psychological boost. When you’re in meetings all day with people telling you all the things that are going wrong with your child and have no real direct control of your child’s actions, it’s hard to keep pushing forward. These problems are particularly hard to talk about at work because you are afraid that people could think you’re a failure as a parent or that you just have a bad kid, but the reality of conditions like autism is that they cause real strain and take a long time to figure out. 

When people give you a hug when you get into work, or call to check in when they have a spare minute, that really matters. Knowing that people care, that they have your back, is always important. And it means that when I go into an important meeting or have to push through a hard task, I really don’t sweat it. Because I know I’ve gotten through so many situations that have been so much harder. I have my team right beside me, and I know they will help me get through whatever comes next.

Ben Waber is the CEO of Humanyze.