It Isn't About Us

By Dave Sevick

Yesterday, I met a remarkable woman whom I am certain I will never forget. She is the mother of a boy living with autism spectrum disorder (ASD), and like so many parents in similar circumstances, she scheduled a tour to learn more about the programs and services we offer at Firefly, hoping that we might be the answer for her 8-year-old son, Jackson.

She lit up like a Christmas tree when she spoke about her boy, explaining the often-arduous journey undertaken by the family since he was first diagnosed at the age of 4, including all the ups and downs that are so familiar to an ASD family: varying levels of treatment, some that worked, some that didn’t, triumphs, disappointments, bumps in the road, and the always-recurring lesson in tempering expectations. And like many families in similar situations, their address has changed numerous times in just four years, solely for the purpose of finding better treatment for Jackson—moves that totaled thousands of miles across multiple state lines.

This certainly wasn’t the first time I had heard about the struggles and challenges ASD families face every day. In fact, since I began working at Firefly, I have developed a level of awe and respect for those families that is difficult to put into words. But this was the first time I had heard it like this–not as much with words, but more with a language that comes from the heart, one that is best understood by the soul.

As the woman continued to share the details of her son’s situation, her own pain and angst was almost palpable, proof of the uniquely maternal, empathic superpower of a mother who will do anything to lessen her child’s suffering. It served as another lesson in my continuing education of the autism experience.

But as I reflected on my visit with this woman, it occurred to me that as remarkable as I found her to be, she really was no more extraordinary than any of the other moms or dads who are an integral part of the Firefly family, and whose children’s futures are at the heart of our mission. Each has made similar sacrifices, and each endures daily struggles and challenges unique to parents of a child on the spectrum. And with that, I gained an even deeper understanding of, and appreciation for the unwavering dedication of ASD families. Over the course of just four years, this particular family had moved five times: twice within California, then to Arizona, on to Utah, and now to Colorado—all for the sake of their child.  Within the autism community, that really isn’t all that unusual.

As I continue to explain to people why Firefly is worthy of their philanthropy, it is important to share the stories of these families caring for their sons, daughters, brothers, and sisters. The divorce rate within ASD families is 85%. The financial burden they face can be insurmountable, often well into the millions over the span of time from birth to adulthood. It is a way of life that would knock me off my feet after only a few hours. And I don’t think I could get up again.

So there you have it. Those are the cards these families have been dealt. Their onus is not intermittent. It is constant, often for life. There is no respite, no reprieve, no vacation. And yet they face each day with an almost superhuman strength that only a select few can truly understand.

I was reminded of that today in a way I will never forget. Yes, the woman I was so fortunate to meet left an indelible imprint on my soul. But it only augmented the immense respect I have for every family in the same situation. And that experience will become a part of the voice I use to help the community better understand what the autism experience is all about, and why it is worthy of their charitable dollars.

At Firefly, our entire existence is dedicated to helping kids just like Jackson, and to creating the path that will lead them to a more satisfying, fulfilling, contributing, and even independent life as an adult. And damn, we’re good at it.

I don’t know if Firefly will be the answer for Jackson. Our team hasn’t met him yet. His mom’s visit to Firefly was just part of a loving mother’s continued search for the place that will make everything better for her child. We showed her what we do, how it works, and why we’ve become one of the most successful treatment facilities in the country. That doesn’t mean we’re the perfect fit for every child with ASD. So, in addition to showing her how we might help Jackson, we offered her information about other highly qualified, nearby treatment centers in the event our focus is outside the realm of Jackson’s needs. But she left Firefly with viable options—and one of them WILL make things better for the love of her life. Because it isn’t about us. It’s about the thousands of kids living with this strange, confusing, and misunderstood developmental disorder…and their amazing families.

Firefly is not a private institution, nor is it a charter school. It is a globally respected 501c(3) non-profit organization—an ABA clinical day-treatment center that has transformed the lives of thousands of children and families who live with autism spectrum disorder each and every day.  As a non-profit, we face constant funding challenges that have the potential to diminish our work and slow the progress of our clients. But we cannot allow that, because even the slightest interruption in any treatment protocol can have devastating effects. Failure is not an option.

So, as we enter ‘Colorado Gives’ season, I’m asking each of you to help us continue our legacy of care for the autism community with a gift of just $25, less than what most of us spend on lunch in just one month. If you can’t afford that, how about $10? Or even five? If you can afford to give more, all the better. I just hope you will give something. You don’t have to wait until December 5, which is the actual Colorado Gives Day (CGD). Just like voting early for an election, you can donate right now—today—and still have it count towards our $70,000 goal for CGD. Please. Too many kids just like Jackson, and too many moms just like the incredible woman I met yesterday are counting on us. We can’t let them down.

You can make your donation to Firefly Autism right now. Just click here, check the box to apply your gift to Colorado Gives Day, and follow the prompts. You’ll be part of the process that will transform many lives—not just the lives of children with autism, but the lives of their families as well. Thank you.