There was a time, not so long ago, when my daughter’s signs of sensory overload could not be ignored. She would scream, kick, and bite. Her behaviors would come fast, seemingly out of nowhere. This was a difficult time for us as we couldn’t always avoid situations that overwhelmed her. Also, her responses to things were unpredictable, making it hard to be prepared. There were times we would go somewhere thinking she would be fine and she would totally lose it. We went through our life on high alert as we never knew what would set her off. We became diligent in educating ourselves in Sensory Processing Disorder while at the same time educating ourselves about our own child. We learned that SPD treatment was not “one size fits all” so it became just as important to learn what worked for her as it had become to just learn about SPD in general. However, just as we would reach a point where things would be under control, her needs would shift. In a moment’s time, things that our daughter once found calming could suddenly alarm her. Situations she could once tolerate would become unbearable. And, all the time and effort we put into a treatment plan would be thrown out the window and we would find ourselves starting from scratch. This was our cycle of living with a child with SPD. The only thing that remained constant in our lives was our daughter’s inconsistency.
One thing that remained constant in our lives were these meltdowns. No matter how her needs changed, the outcome of her over stimulation remained. She would reach a boiling point and eventually explode. We became dependent upon these meltdowns in a way because it was our signal that she had enough. It helped us pay closer attention to the behaviors that presented before the meltdown so we could begin to treat her over stimulation before she broke down. It gave us an idea of the triggers in her environment that set her off so we were able to better understand where her sensory deficiencies stemmed from. In retrospect this behavior was needed as it helped pave the way for meeting her sensory needs. All the information we were able to compile because of a meltdown is what helped us make progress with our daughter.
In the last year, our daughter’s progress has been astounding. A mix of maturity combined with proper sensory input and an awareness of her own needs has helped our daughter to reduce and almost eliminate her sensory meltdowns. However, with this absence of meltdowns comes the misconception that her SPD does not exist. For anyone who has known her for a long time it seems as though she has been cured or that her issues were something that she has simply “grown out of”. To people meeting her for the first time, it is thought that her condition never existed. However, what people are failing to see is that my daughter is overstimulated, it is just presenting itself very differently. And this proves that no matter how much awareness has been raised for SPD there are still so many misconceptions. Last year, my daughter’s teacher spent much of the year disagreeing with me about her SPD, saying she simply didn’t see it. However, she noted my daughter’s hyperactivity and impulsivity. She made mention of “heightened and exaggerated emotional responses” but whenever I would mention the SPD she would say that my daughter “isn’t melting down.” And it was clear to me that the biggest misconception was that Sensory Processing Disorder equals meltdowns. Ironically, when the need for my daughter’s OT services were in question, this same teacher was asked to fill out a Sensory Profile which asks specific questions about a child’s classroom behavior. After scoring it showed that the teacher’s responses rated my daughter as having a “typical performance” in only two sensory categories. The rest of her responses fell into the “definite difference” and “probable difference” categories. So, what does this mean? It means that this teacher most certainly saw evidence of SPD inside the classroom, she just didn’t didn’t know that she did.
This year, I am being met with much of the same attitude towards my daughter’s SPD. It has been mentioned more than once that her overload does not present itself in school. However, it is reported that my daughter needs to move constantly, can be impulsive at times, and mouths objects. Last month, during a week of assemblies,I got a glowing report of how well she had handled herself. She participated in the assemblies and only asked for a break when another child needed one. However, by the middle of the week my daughter faked a stomach ache to get out of going to school. After some prying on my part she revealed that she was afraid there was going to be another assembly and she could not tolerate anymore. Yet,the teachers believe that any need for sensory input is attention seeking rather than true need. And while I cannot deny the fact that she has made tremendous gains and that her sensory deficiencies do not disrupt her life the way they used to, that is not to say they do not exist. Just yesterday she came home with a spot on her shirt that she had chewed on while at school. Last month she came home with her undershirt in her backpack because she took it off in the middle of class. This is sensory overload. No, it isn’t kicking, screaming, disruptive overload. But it is still overload nonetheless. And this overload, while minor in comparison to past behaviors, needs to be addressed. Just as sensory therapy is not “one size fits all” neither is sensory overload. And as I continue on this journey watching my daughter’s needs change, the new consistency for us has been the overall misconceptions of what SPD is, what overstimulation looks like and how it should be treated.
A few weeks ago I considered putting my writing on the back burner. With all of my daughter’s progress I felt as if there wasn’t much of a story to tell. However, I realize now that the more progress she makes, the greater the need to raise awareness on her behalf. No matter how her SPD presents itself, it continues to be judged as something it is not. When her responses were loud and hard to ignore, it was judged as bad behavior and poor parenting. As her responses become more subtle, they are simply overlooked. Meltdowns may have become a thing of the past, but my daughter’s Sensory Processing Disorder has not. And, neither has my role as her advocate, therapist and spokesperson. So, we continue on, educating ourselves, educating our daughter and trying to educate the people that encounter her. We can’t make people understand us, but we will do our best to try.