What does hope look like?
The behavioral doctor sat between house calls in her car with amazed tears streaming down her face.
Was this viral story true?
Intuitively, she knew that it must be, for she instantly recognized the chubby little face she saw on the screen. She suddenly recalled the clear little voice asking for “music!”, and a couple of weeks later, “music, please!”. She remembered when his list of words included about five. She recalled singing songs (“Way up in the sky, the little birds fly….”) to a toddler who had needed early intervention desperately.
But the story she read on facebook was also hard to believe, because this young man wrote so confidently and was about to graduate. He also sang so beautifully, as links posted by his mother—and his scholarships to prestigious programs—confirmed. It had been at least 15 years since she saw the toddler’s face, or said “do this” and prompted him to carefully stack one block on top of the other, painstakingly teaching play skills that other children seemed to learn so naturally. At the time she had worked for an early intervention program, providing or supervising up to 7 hours per day of behavior therapy to children whose tantrums often overwhelmed and injured their parents, teachers and skilled therapists—but communicated their wants and needs before they had words. And at the time, she did not know that behavior analysis would become her fulfilling career and that she would go on to study neuroscience and learn how the brain really does change with the hundreds and in some cases, thousands of hours of careful social input that certified behavior analysts are trained to provide.
But this was definitely the same little guy, except he was all grown up. Suddenly she realized she hadn’t thought much in those early days about what happens after early intervention. She works across the lifespan now, including working with adults who never received it but would have benefited so much, and with children whose families can’t afford the recommended dosage of hours that the research suggests is more effective. In the thick of it, in the middle of the 5th meltdown in one day, or when the school sends home the child because they “can’t handle” it, or when the child just won’t sleep and everyone in the home is exhausted wondering if they’ll make it – hope can be hard to see and hard to find.
Children do grow up.
Whatever we give them is worth it.
Nick showed her that.
Of course, not all kids will make this kind of progress, not all families can afford to devote these numbers of hours, and not all children need the same type of program. And support doesn’t end when children grow up, so we must keep fighting hard.
But still, there is hope: there are more options than we originally hear about, as families can learn how to implement the techniques themselves, there are some programs that want to work with children at low cost or the school sometimes funds behavior analysis if appropriate, and there are books that help parents understand more about communication and social challenges from a behavioral perspective. There are also hidden sources of funding (see information about EPSDT funding for children who need behavior support reimbursed by a Medicaid program from birth to 21 for children who qualify).
Hope looks different for everyone. Whatever the goals, whatever progress means to you, hope is knowing that what we do now DOES make a difference.
What does hope sound like?
Today Nick is an accomplished and award-winning musician and writes beautifully about his story, in his own words. Read one answer to this question here:
What about those of us have been through trauma, or are treating it? Is there hope here too?
Several posts on this blog are related to trauma, and yet this is a happy-ending story (that’s not over yet, as I can’t wait to see what you do, Nick!) about a once-little boy on the spectrum. Are there happy endings after trauma?
Sure there are.
I’ve been so lucky, as part of my work, to be there when a once-abused adopted girl finally transferred out of a hospital into the community setting again, after age 40. I’ve been there with the adoptive parents of a foster child they helped to overcome years of neglect. And I’ve been there when a mother decided to start implementing the skills provided in behavior coaching sessions to improve her relationship with the children she was at risk of losing.
It happens all the time.
Let’s keep up the hard work, faith, and hope.
This article is inspired by a guest post written by Nick Ryland for KerryMagro.com, in which Nick shared his experience with music. Kerry Magro.com is an autism advocate and best selling author. Nick and his mother both provided permission to Dr. Kolu share this story.
Read more about ABA from an author who is a Board Certified Behavior Analyst and parent discuss a behavior analytic approach to establishing language: http://marybarbera.com/
Learn about Pivotal Response Treatment, one naturalistic teaching approach that is behavior analytic:
Learn more about the Behavior Analysis Certification Board guidelines for Autism Spectrum Disorders here