When Nora and I started this blog our objective was to bring awareness to a disorder that affects 1 in 20 children. To give educators, parents, caregivers, friends, siblings, grandparents, uncles, aunts, cousins, and the children with SPD knowledge so that they can better understand what SPD is and more importantly what it is not. Each child with SPD is unique in the way they experience touch, taste, smell, movement, and other sensations. Some sensations are more intense for one child and less intense for another. Some children just don’t process sensory information typically which can make a cotton pair of socks feel like sandpaper. One of the most vital pieces of information to understand is that living with SPD does not mean you are the disorder. Nora has a Sensory Processing Disorder, it is not who she is.
To understand what SPD is I think we need to start with a solid definition:
“The senses provide information from various modalities—vision, audition, tactile, olfactory, taste, proprioception, and vestibular system—that humans need to function. Sensory processing disorder is characterized by significant problems in organizing sensation coming from the body and the environment and is manifested by difficulties in the performance in one or more of the main areas of life: productivity, leisure and play or activities of daily living.Different people experience a wide range of difficulties when processing input coming from a variety of senses, particularly tactile (e.g., finding fabrics itchy and hard to wear while others do not), vestibular (e.g., experiencing motion sickness while riding a car) and proprioceptive (having difficulty grading the force to hold a pen in order to write).”
Thank you Wikipedia! I know it is not always a great source but in this case they nailed that definition! One of the best parts of this definition is that it talks about the parts of life that can be affected with SPD. This is important because I think we all have a little SPD in us, I know for me I do. However, for a true diagnosis the difficulties must be affecting one or more areas of life….school, work, home, play. As an Education Assistant I have seen children diagnosed who should not be. I have also seen kids that would benefit from a diagnosis (mostly because with a diagnoses the support at school can be put in place).
Another important thing to remember about SPD is that it can be a stand alone disorder or it can co-exist with another disorder. Children with autism often have SPD as well but the reverse is not likely. In Nora’s case it is a stand alone disorder, though she was screened for ASD (Autism Spectrum Disorder) at the age of 6 but did not meet any of the criteria except the sensory component.
So now that we know a little of what SPD is lets talk about what it is not. To start with it is not a disease or a medical condition that can be treated. It is not contagious nor is it curable. A child will not outgrown it or look back and think of it as being a phase. It is not anxiety or a mental illness. It does not make a child less or not able to learn and grow. SPD is not something they cannot control (they can learn to be sensory smart kids). It is not something to be ashamed of and it is not something that defines a child. It is not bad parenting or something that is made up to explain behaviour. It is not hopeless and it is most importantly not an excuse. As the parents, teachers, and caregivers it is our job to help children with SPD become the best that they can be. It is important to read and learn all that we can about SPD so that we can help our children and other children with SPD learn and grow.
Everyday Nora faces a world in which her brain struggles to organize information that comes from her senses. She can hear crickets outside her bedroom window at bedtime which make her mind race instead of relax. She craves salty foods, wears socks and crocs, hears sound of lights overhead, and notices the when someone is tapping a pencil across a room. However, despite all the struggle she has learned to manage her SPD through occupational therapy (when she was younger), education, and coping strategies (many of which she created herself). Recently, Nora has a psycho-educational assessment for her learning disability. One of the things that the psychologist was most impressed with was how diligent Nora works despite her struggles and also how self-confident she is. The psychologist asked what our secret was as her parents and our answer is simple. We normalized SPD! We taught her that we all struggle with something in life. We all have things we are exceptional at and things we struggle with and neither define us. SPD is not a person it is something that people can have.
Every child has the potential to be great and do great things in this world. We can not define them by a disorder or condition they may have. We do not limit their potential based on a diagnosis or lack there off. Our role as parents, caregivers, and educators is to encourage them, to teach them to think for themselves, to understand that each child will grow and learn at their own rate, and to advocate for them (and teach them to advocate for themselves). In the words of a great man…..
“Everybody is a genius. But if you judge a fish by its ability to climb a tree it will live its whole life believing that it is stupid.” Albert Einstein