Last updated: What working parents of kids with special needs want you to know

What working parents of kids with special needs want you to know

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When the COVID-19 pandemic hit communities and the world seemed to reset to a new abnormal, it felt like working parents were asked to do the impossible: maintain their jobs while overseeing the responsibilities of remote schooling and/or full-time childcare. Each of my four children faced challenges, but my eldest and basically nonverbal child was unable to engage in online learning.

Many can probably relate when I say that as a working parent of children with special needs, it was an absolute disaster.

When the pandemic hit, our public school — to their credit — did the absolute best they could and offered to continue our son’s services via Zoom. Knowing my 18-year-old son as well as I do, I knew a full day of Zoom was never going to work. But I set up 15-minute blocks with his providers at school: occupational therapy (OT), speech, his special ed teacher, and his paraprofessional (para) as well. We had little blocks of learning and as much movement as possible. And on the days when he just wasn’t feeling it, I would tell them that.

So that left what felt like a billion hours a day for me to keep him occupied, engaged, and not regressing or “losing” skills. Though my husband and I are both entrepreneurs running our own businesses – which gives us a lot of say about our schedules – it was very, very hard.

No matter if your children are neurotypical or not, some face additional circumstances — whether related to poverty, racism, or other systemic challenges. But all parents want their children to live healthy, happy lives, and to be proud of who they are.

I’d like to shed some light on what it’s like for many of us during this time – but I’m in no way speaking on behalf of all working parents who have kids with special needs.

Leaders: Working parents of kids with special needs need you to hear them right now

  • We can’t and shouldn’t act like there are no kids at home.

I feel for anybody who works in a typical job setting and has to answer to somebody who might not understand what it’s like to work at home with children. My kids are frequently zooming through my husband’s calls. Fortunately, my husband, who works in the music business, can laugh about it. We’re lucky that it’s been fine for us, but it’s really tricky for people who are expected to act like they don’t have kids at home.

Actually, it’s impossible.

When my son was first diagnosed as a toddler, my husband was actually given the advice by someone from a record company not to tell anyone about it, because people would think he was distracted, couldn’t travel, or that it would limit his career in some way.

It took us both a while to feel comfortable talking about our family and our situation, but my husband’s not one to keep quiet about his family. Eventually he joined autism charity boards, and became an advocate for inclusion and awareness.

Wouldn’t all employers gain from having advocates who champion inclusion at the workplace?

  • We need support from people who “get it.” 

Parents raising children with special needs speak their own language, and you need others who are fluent.

We asked parents what advice they’d give to parents of a newly diagnosed child. The resounding answer: “Find friends who get it.”

Everyone agreed that the most important thing was finding a community of others experiencing parenthood the way you were, because your friends won’t understand this new role into which you’ve been thrust. Given the health crisis, isolation can be an even bigger problem for parents and kids with special needs.

Working parents are already experiencing stressors. Parents of kids with special needs face complex COVID-19 challenges from isolation, anxiety, and health concerns. (Parents of children with an ASD, for example, may have had a higher rate of divorce in one study, but that’s not a prognosis for a divorce.) Sharing knowledge, understanding, and empathy could go a long way to support these parents.

It’s helpful to have a community where parents can interact with each other in a safe space, share their content and events, and connect with specialists (like occupational or speech therapists) who can answer questions.

  • “Special needs” can be a controversial term.  

Not everybody feels comfortable with the term “special needs.” Some people use it specifically as a term that relates to education. Some people prefer “neurodivergent.”

At this point, I don’t think there’s a universally preferred term to describe everyone and any behavior that is not neurotypical, so it’s good to be aware that “special needs” is an incomplete and fraught term. When you’re not sure, it’s okay to ask — especially questions that are rooted in empathy.

  • Don’t put us in a box. 

Just like ‘autism spectrum disorder’ refers to a broad range of conditions and subtypes, families who say they have a special needs child can mean many different things.

We all have questions about our children’s development, how we can support them better, and what resources are available. In our network, we have parents of children with a physical disability, dyslexia, ADHD, anxiety, autism, cerebral palsy, and Down syndrome. Anyone who wants to learn more is welcome.

And while we come from many socioeconomic and ethnic backgrounds, we should note the many uphill battles for families who live in poverty.

The National Council on Disability pointed out that people with disabilities live in poverty at more than twice the rate of people without disabilities. For many kids with special needs, there are all sorts of inequalities that can begin at childhood and affect life as an adult, so it’s critical to create communities of support and advocacy early on for everybody.

  • We’re always planning ahead for the next transition.  

Speaking of advocacy, parents of children with special needs are doing a lot of it. After the diagnosis and during the early days of searching in Google, I tried to do as much research as I could.

But you can’t try every single intervention that exists, unless you want to go bankrupt. I’ll fight tooth and nail for my kids and the services they need, but it takes a lot of research and speaking to specialists and other families to learn about different interventions and what’s best for your child.

Before winter, we gave a lot of thought to how we would approach the cold weather and being confined indoors. We made a big decision to temporarily relocate near friends, and have access to more time outdoors. Now we’re getting ready for a transition back to an in-person school routine. In the meantime, we’re planning for the spring and summer.

My other kids know that their older brother faces enormous challenges. And while my husband and I work really hard to give our kids individual time and attention, oftentimes we make decisions for our entire family based on the needs of our eldest. Despite the challenges, we’re grateful that our children are learning and practicing empathy at home all the time.

Parenting is always hard, but the challenges parents have faced over the past year at home and at work are staggering.

During this pandemic, there are additional considerations and risks for all families to consider, so it’s more important than ever that working parents have support to find the connection and community they need.

We need support.

We need each other.

That’s why I’m proud Wolf+Friends is a part of the Back to Best for Parents program, brought to you by SAP in partnership with The Female Founder Collective and TIME for Kids.

HR, better.
Employees, happier.
Businesses, healthier.
It’s time to modernize the employee experience.

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