I thought about starting this post with all the reasons why I have not been posting, because I really feel bad about starting this and then being absent. But what is most important today is the reason that has motivated me to post; a phone call from a parent to tell me that a child was suspended from school. A first grader suspended because of a meltdown and subsequent attempt to run from school.
This is a child who has received services from the public school system for three years. A child who was observed by an OT at school last year but was determined to not have OT needs. A child who received a comprehensive neuropsychological evaluation that included a diagnosis but no mention of potential sensory processing issues or need for an OT evaluation. A child who, until just recently, was not identified as even possibly having a sensory processing disorder. Because apparently no one among all the doctors, teachers therapists or other parents they encountered had ever suggested the idea to his parents. Until I met them they had never even heard of sensory processing disorder.
When I met this child I suggested to the mother that it appeared to be a case of sensory processing disorder with motor planning problems and poor vestibular processing. There was clear evidence of a coordination disorder and difficulty moving through space efficiently. From the mom’s description it sounds like the child also has over-responsiveness to sensory input with poor modulation of behavioral responses to the surroundings. I suggested some books for her to learn about sensory processing while she waited for the OT evaluation to be completed. She called me later, ecstatic to tell me that what she was reading “was the key to the puzzle.” She felt like she finally had something solid to help her understand her child. She was reading the books and using the suggestions. And they were working. Behaviors improved, cooperation was better, task performance was better. She was elated! But today she was angry.
She was angry because no one had ever seen the behaviors as possibly associated with anything like a sensory processing disorder. Because she had never heard of it before and the school didn’t know what to do about it. When I hung up from the call I was struck by how long this child had been “in the system” and yet how needs had been unmet. Because no one considered sensory processing disorder. And then I thought of Oprah.
A few weeks ago Oprah had an episode that profiled a young boy who had violent tendencies; it was a wonderful way to bring childhood mental illness in to the public forum. As many Oprah shows do, this one created a flurry of responses and interest….from the SPD community. Because within the context of this boy’s story the only condition initially mentioned was “sensory integration disorder.” There was concern that others would be misled as to what sensory integration or processing disorders look like. There was a call for a grassroots effort to have Oprah expand on this opportunity to educate others about what SPD is and what it is not. The hope was to get Oprah to do an entire show on the topic. Something that the SPD Foundation has been trying to do for a decade.
Through the efforts of the SPD Foundation and all those who contributed with comments and letters, the Oprah website has been modified. The text of the episode now includes a summary of the conditions that Zach was diagnosed with in addition to SPD. It also provides a description, albeit a very brief description, of what SPD is and how it impacts on Zach’s life. And there’s a link on the bottom of the page to the SPD Foundation. It’s a start.
But is it enough to get the word out about SPD so that kids like the one who got suspended today can get the right services when they really need them? What if Oprah had actually done a whole episode that focused on SPD? Would this parent have somehow heard about the condition? Would she have perhaps watched the show or had contact with someone who did? Would someone have suggested that maybe her child had this condition so that at least the parent knew what questions to ask? Would anyone on the team serving this child perhaps have considered whether this condition was driving the behaviors? Maybe. Maybe not. But if no one knew about the condition, no one could consider the possibility. You don’t know what you don’t know, as the saying goes.
Dr. Lucy Miller has been on a mission to get the word out about SPD. Now, I’m not sure that The Oprah Show is the best way to get the word out. It certainly isn’t the only way. But it is one way. And the more we can get the word out, the better. It would be great if Oprah would help. Look what happens when Oprah recommends a book! Maybe getting SPD talked about on Oprah would get everyone talking about it. So that what happened to that little first grader might not happen again. So that parents would know enough to ask “could this be SPD?”
I’m hopeful that some day knowledge of SPD will be commonplace. Someday looking for SPD related behaviors or motor coordination problems might be a part of routine well baby visits and developmental screenings. Someday early childhood educators and care providers will all be well versed in recognizing the red flags that signal a potential sensory processing issue. Someday parents will all understand how sensory processing and sensory motor experiences influence their child’s development, behaviors and learning. To help reach that point, I’m going to keep on talking and telling others about SPD. You can help, too. Let’s keep educating others by reaching out to other parents, asking people to be understanding about sensory based needs, informing the teachers and the doctors who serve our kids of what we know about SPD. Don’t stop. We can spread the word. We can’t wait for Oprah.