Imagine this: You have two young children under the age of three, a toddler and an infant. A few months before your toddler's third birthday, she is diagnosed with autism. Ten months later she is also diagnosed with a rare white blood cell disorder. Just as she is recovering from an emergency surgery to install a feeding tube, your younger daughter starts to show early signs of autistic regression.
Four and a half years ago, that was me.
At the time we lived off-the-grid on a ranch, an hour from the local hospital and three hours from a children's hospital. In the midst of long drives to daily appointments and therapies, I found out that our individual insurance policy had an autism exclusion so would not cover anything related to autism.
My frustrations mounted. I could see a demonstrated need for more support for rural autism families. In many large cities there are autism centers that walk families through the process step-by-step and offer cutting edge evidence-based therapy services. In rural areas many parents are still advised to take a wait-and-see approach. From diagnosis to funding to selecting appropriate therapies, rural families are largely left to figure things out for themselves.
Early in our journey, I was lucky to meet Dr. Kristen Byra, a PhD-level, board-certified behavior analyst who has worked extensively with children on the autism spectrum. While I educated myself about autism insurance mandates and traced the flow of Medicaid dollars through the state disabilities system, Dr. Byra started working with my kids.
We arrived at the idea for our company, ABLE Interventions, after repeatedly failing to find an autism therapy app that could be customized for our ABA (Applied Behavior Analysis) program. We started ABLE with the mission to support families in rural and underserved areas and the ABA providers who work with them. (To that end, we also wrote “Help! My Child Has Autism! A Parent’s Guide to Start, Fund and Maintain an Evidence-Based Intervention.”)
It may seem an unlikely time to launch a new business. But there are benefits to being an entrepreneur when you’ve got kids with special needs — from having flexibility and the ability to make your own schedule to creating potential future employment opportunities for your disabled loved ones.
While the process of building a business — however meaningful — can be challenging, I’ve learned some valuable lessons along the way that have helped me.
- Start small. My husband and I are die-hard DIY-ers. We both bootstrapped our first businesses by starting indie record labels in our early 20’s when we were playing and touring in our respective bands. Likewise for ABLE, Dr. Byra and I used personal savings for start-up costs.
- Look to family and friends when assessing your resources. Talk to everyone you know. They may have helpful skills or connections. For ABLE I hired one friend to program our app and another to build our website. Don’t go into debt right away for fancy websites or expensive products. Dream big, start small.
- Be gentle with yourself. Special needs parenting is hard and high stress. Be realistic about how much time and energy you can dedicate to your business. Schedule your days and weeks ahead of time and stick to it as much as you can, but go easy on yourself when things come up.
- The emergency fund is non-negotiable. When caring for a sick or disabled loved one, legitimate emergencies can arise faster than the fund can be refilled. Do not raid the emergency fund for business expenses.
- Get help when you need it. Both for respite/self-care and business advice.
The girls who started me on my journey are now almost seven and four years old. Both are growing up into bright, inquisitive and sweet little girls. They still have some challenges that they will have to face throughout their lives, but they have had a great start and have come so far already. It feels good to know that ABLE Interventions is helping me to help other families like ours, while also creating a more secure future for our girls.
Jen Turell is a member of the DailyWorth Connect program. Read more about the program here.