Photo by Galen Ducey Photography
By Karen DeJager, Photographer and Mom
I am the fourth generation to the Bay Area, happily married for eight years, and have two beautiful little boys, Dylan and Logan. Both have been diagnosed as being on the autism spectrum. Having children with special needs can make a parent feel jealous of others and a little bit cheated. You had a cute, cuddly baby, just like all other moms but the journey soon enough shows itself to be way more challenging than for others. At some point, you realize and accept that you’re on a wildly different parenting path. One that you did not plan for and often feel ill-equipped to navigate. I mourned the loss of how I envisioned my parenting path but have wholeheartedly embraced the new one. It wasn’t just my child’s differences that were making my life harder but also my expectation of how things should be. But I’m also like any other mom working toward balance.
Navigating all of the autism related services like special day class, speech therapy, occupational therapy, in-home applied behavioral analysis, social groups, feeding therapies, neurologists, geneticists, and IEP meetings to name but a few is challenging. It involves a lot of follow-ups, administrative red tape, and advocating. We strive to engage with our kids and make every effort for them not to feel overwhelmed. They are kids after all. The way that they perceive their world and the lack of clear communication can make this very hard work indeed.
Although my husband and I make a very effective parenting team, it’s easy to get wrapped up in the day-to-day struggles. Raising a child with autism is not only physically exhausting, but it can also be emotionally draining. Anything affecting your kids can weigh heavily on you as parents. When kids are non-verbal, they are easily abused by caretakers, teased, or dismissed by others. It’s stressful for both the parent and the child amid a grueling schedule of much-needed therapy sessions. Most typically developing people grow up, acquire new skills, and eventually leave the nest to take care of themselves. Our boys learn at a different pace and experience life in a more abstract way. They may live with us for the rest of our lives, or they may have to be institutionalized if their needs go beyond what we’re capable of providing.
A “Real” Job
I always wanted to be a photographer. It began as a childhood hobby of mine and a minor in college, but, “photography is not a real job,” they told me. When my son was born, and his needs became apparent, we needed me at home full-time. After a few years of focused parenting, friends started asking me to do headshots and holiday pictures. I became popular enough that charging money for my time began to make sense. It also gave me the flexibility to set my work schedule around our kids’ needs. From humble beginnings, my services have expanded to engagement, wedding, maternity, newborn, family, and even vintage inspired pin-up photography. I have been published in magazines and teach at a photography school. I work ‘til midnight seven days a week. It’s certainly starting to feel like a REAL job!
Working Toward Balance
I’m constantly trying to create working mom balance and take care of my relationship. We try to do this in a few ways. It is essential that we book babysitters far in advance for date nights. It’s “us against the world.” We face unexpected challenges from insurance companies, school districts, and even family members. It is important to have that teammate by your side and to present a united front. Of course, a good sense of humor helps a lot, too. We’ve even found ways to laugh about things like fecal smearing, urinating in public, or throw-down tantrums in the most uncomfortable settings.
We’re encouraged by our boys’ continued improvement and as we get better at accommodating their needs, their growth is accelerating. We celebrate every milestone and skill that they acquire, and we do not take anything for granted. Although our parenting journey is not an easy one, or, at least nothing like the one we expected, we are thankful to have the amazing boys that we have. They have taught us a lot about ourselves. Above all, we just enjoy being together. We play and laugh a lot and we have grown in unexpected and pleasantly surprising ways together. I never thought that I would turn my hobby into a career. Without our boys, I would not have taken that leap of faith. I’d be shuffling paper in a cubicle somewhere, because it’s the safe option. Becoming a photographer restored balance to my life and it is a realization of a dream that I had before I even thought of being a parent.