Every day, I have the privilege of working with your children. Some days are awesome. Some days we make great progress, like helping your child trade self-injurious behavior to get what he wants through productive communication skills like sign language. These moments, won after hard work and careful therapy, are amazing.
But some days, as you know better than anyone, are difficult. Days when your child is frustrated and you are worn down from absorbing their pain. And it’s those days I want to talk to you about. I know that while these days may be a challenge for me, that’s nothing compared to the exhaustion and hopelessness you sometimes feel—not all the time, I know, but definitely on those difficult days. So I wanted to write this letter, just between you and me, to let you know: I see you. It’s hard, but there’s hope. And there are many, many good days ahead.
I see you.
I see you when you first come into my office, a bundle of nerves, sometimes feeling dejected but also full of hope. For some, I first meet you after your child has been admitted and not long after a diagnosis of “on the spectrum.” For others, I first meet you when you’re deep into the journey of caring for a child with special needs. In those first-impression moments, I’m keen to your body language, verbal cues and eyes. I’m looking and learning who you are, what you need, and how I can help. I see you. I’ll walk with you. You’re not alone.
I know it’s hard. Even as I say that, I can hear you protest. Passionately delivered caveats to the statement, “It’s hard.” Yes, I know you love your child more than life itself. You would walk through fire to save her from harm. I know that the world often misunderstands and underestimates him, so you feel the pressure to wage a life-long PR campaign to share the many beautiful, soul-stirring, heart-bursting moments your precious child brings you every day. I’m on your side, your child’s biggest fan and advocate. This is a safe space. So just between you and me, it’s ok to admit: sometimes it’s hard.
It’s hard worrying about the future. Will your child be able to be independent someday? Can your child manage that upcoming family event, replete with environmental stressors like loud noises and large crowds? Is your child getting the nutrition he needs, despite so many texture and flavor aversions? Will your finances ever recover from so many appointments and services? Will your child find friends?
Watching you soldier on through the litany of worries and services inspires me. Your unflagging dedication inspires me to wake up every morning and throw myself into finding new treatments and resources. You inspire me to strive to be more like the exceptional caregiver that you are.
But there’s hope.
Advances in effective treatment and research are made every day. We’ve come a long way in the past couple of years and things will only improve.
I hope for a world that accepts and celebrates those who are different. I hope for communities that see you on days when it is hard and ask how they can help. Through your advocacy and education, Autism Spectrum Disorder has gained worldwide awareness and raised a staggering amount of money to fund research and support services. We have a long way to go, but man have we made some great progress, thanks to you! Just seeing how far we’ve come gives me hope of your child’s future success in a world that is on the path toward better understanding and support.
There are many better days to come.
Yes, today may suck. It’s ok to say that. But I’ve been doing this work for a long time. I’ve seen kids with severe behavioral problems succeed beyond my wildest expectations. For example, we worked with a child who was on the spectrum and also had behavioral problems. Through parent trainings, advocating for services at school, adding behavioral supports at home, and piecing together a comprehensive team of outpatient specialists, that child is now an adult attending college. I’ve stopped putting parameters on your child’s potential because they amaze me every day.
And you know who else amazes me? You. I wanted to let you know that. So I’m sending this letter, just between me and you, to tell you that I see you. Some days are hard, but I think you’re doing great.
Behavioral Services Manager, Sheppard Pratt Health System
Tom Flis, MS, BCBA, LBA, LCPC, is the behavioral services manager at Sheppard Pratt Health System, overseeing the inpatient behavioral programs across both the Towson and Ellicott City campuses. Tom is a board certified and licensed behavior analyst and a licensed clinical professional counselor who has more than 15 years of experience working with children and adults diagnosed with a developmental disability across multiple settings, including in-home, schools, inpatient, outpatient, research, and out in the community.