When my daughter was given a diagnosis of Sensory Processing Disorder (SPD) thirteen years ago, it was both a relief as well as a frustration to hear.
There was a sense of relief because I’d gone through two years of knocking on doors, endlessly researching her symptoms, asking questions to the experts (who basically just transferred me to another expert), recording every behavior and reaction just to get the answers I needed to help her. After watching my child suffer with something I neither understood nor could help her cope with, it was an incredible relief to finally understand what I was dealing with.
The frustration, however, was that even though I had the diagnosis, I wasn’t able to get my daughter into the right treatment program immediately because she didn’t fit neatly into any of the categories that would have given her the ‘code’ she needed for program qualification, or the coverage to enter a treatment program even if she qualified for one. This led to even more research, interviewing and more door-knocking, but we finally got onto the right path.
The number one thing caregivers of a child with SPD need to do is to arm themselves with information. Not only about what SPD is, but also how to get their child the specified help the child needs. Like with most disorders, it presents itself differently in each child or person and, therefore, treatment options would also be different to ensure a treatment program is specified to what their bodies need help with the most.
Here are five things no one told me about SPD initially, but that I finally understood, and what all parents should know:
(1) There are actually eight sensory systems. We’re taught from Elementary school that there are five senses made up of sight, hearing, taste, smell and touch. But there are actually three more systems that aren’t taught in school. I knew about some of the struggles demonstrated in these lesser known systems, but I never knew there was a name for them until my daughter went into intense occupational therapy.
Here’s a short breakdown of all the systems:
Auditory: This is the sense of hearing. It involves not just what we hear, but also how we hear and interpret the sounds around us. Sounds from the environment travel to the inner ear where they cause the eardrum to vibrate. The vibration moves to the inner ear where tiny bones called ossicles vibrate, causing movement in the inner ear fluid. The movement in the fluid results in changes in the hair cells, which send the sound message up the auditory nerve to the brain for interpretation. Any malfunction in any of these steps can result in sound messages not being interpreted properly in the brain (This sense is closely related to the vestibular system, described below.)
Olfactory: This is our sense of smell. It’s actually the only sense that doesn’t need to make pit stop at a specific processing area in the brain before telling the body how to react. Our sense of smell can be a powerfully emotional experience, because we often connect certain scents with memories. It effects what we eat, what we play or interact with, who we allow to get close to us or even what places we are willing to visit.
Visual. This is the sense of sight. It involves everything we see, but also how our brains interpret what we see. Visual messages are sent from the retina to the optic nerve, which sends the message to the brain for interpretation. Because the eyes use muscles to adjust to light, which allows us focus on objects, it’s closely related to the vestibular and proprioceptive systems discussed below.
Gustatory: This is the sense of taste. It’s closely related to smell (think of when you have a cold and can’t taste anything). Taste is important because it not only helps us have a good relationship with food, but it also helps keep toxic things out of our bodies (eg: When things taste bad, you spit it out).
Tactile: This is the sense of touch. The skin is the largest organ in the body. This system helps us learn how to interact with the people and objects in our environments. It also helps keep us safe by understanding when things are hot, cold, soft, hard, painful or feel good. It makes us feel comfortable touching and being touched. And because it effects everything from how clothes feel to eating or even going to the bathroom, it is the hardest sense to treat.
Vestibular: This is the sense that is closely connected to the cochlear system in the inner ear. It helps us feel balanced, coordinated, grounded and helps us with maintaining proper head motion. It is highly connected with vision and hearing.
Proprioceptive: This sense sends messages back and forth between the brain and the muscles and joints. This system not only tells our bodies how to move, but if we’re moving and how fast. And because it involves all the muscles in the body, it can effect speech and eating (tongue, jaw and mouth muscles), writing and hand grip (fine motor skills) and muscle tone (gross motor skills).
Interoceptive: There are not many SPD resources that discuss this system as it is rather complicated and extensive. It involves many different organs, hormones and systems that carry on inside of us, but that we don’t control (eg: circulatory, digestive, excretory, to name a few). As someone who needed to understand every aspect of this disorder, no matter how complicated, I took courses on the brain and these various systems so I could understand how and why my daughter’s body would go into such distress. It isn’t just what we see (reactions) that is most distressing. It is what happens on the inside, what we can’t see, that bothered me the most. This website provides great information for those parents who wish to learn more about the interoceptive sensory system and why, I think, it’s important to learn about.
Parents need to learn about, understand and inform others about all eight systems. Often, a child’s body desperately needs input to these systems, but isn’t getting the right kind of input, or any at all, because people don’t know about them.
(2) Coverage for treatment isn’t always there. This is a real frustration for parents who can’t afford the specialized SPD treatment their child needs. You see, many people in the medical profession don’t see SPD as a separate disorder. It’s often felt that it’s part of other neurological disorders such as Autism, Asperger’s, ADHD and others and, therefore, would be treated along with the main diagnosis. However, SPD is a separate disorder with its own symptoms, treatment methods and diagnosis. I usually invite people to visit the phenomenal continued research conducted through the STAR Institute to answer any questions or doubts they may have and to give skeptics the right information.
(3) SPD can be treated. These children learn to ‘reconnect’ their brains to process sensory information effectively through specific treatment with an occupational therapist (OT) who is trained in dealing with SPD children. OTs expose children to sensory stimulation through play and fun activities so they learn how to tolerate and cope the stimulation. Knowing that SPD can be treated offers parents hope for their child’s future, and the assurance that their child will grow to live a productive and happy life.
(4) It’s a long road. Treatment can be a long road with many bumps to endure. We knew the areas my daughter needed help with the most, but finding the exact things that her body craved was the challenge. Parents need to remember that their child’s needs will change from one day to the next and so will the tools, exercises and activities that their bodies need to calm down or to get going. It can be frustrating some days, believe me I know. But parents should be patient and work with the OT trying different treatment methods, having options to offer their child, and going with the flow. Eventually, the child will be able to tell the parent what his body needs, or simply go to the exercises and tools he needs on his own.
(5) Advocating is more than telling what’s ‘wrong’. Advocacy is fighting for our child’s welfare and rights, that’s true. But it’s also about raising awareness through giving information, encouraging discussion and getting people sharing their stories. Getting people to see the child as a whole, struggles and strengths, is what advocacy is all about. Besides, what he sees us doing for him today, encourages him to take on himself tomorrow.
The only other thing I can bring into the spotlight is that siblings are often very affected by what their sister or brother is going through. They may have to explain why their sister reacts the way she does sometimes. Or be asked why their brother needs headphones and sunglasses when he goes out. Or even why Mama is pressing or massaging their sister’s muscles and joints. Giving siblings the power of information makes them feel like a part of everything and, in their own way, they can help.
Knowledge is an amazing gift. With it we raise awareness and that leads to understanding. And that’s the most powerful thing we can do for these families.