Five Things No One Ever Told You About…SPD by Chynna T. Laird

Today’s guest post is by Chynna T. Laird, a mother of three beautiful girls Jaimie (six), Jordhan (four) and baby Sophie (ten months) and a gorgeous baby boy Xander (two). In addition to living her dream building up her at-home freelance writing business (Lily Wolf Words), she’s also studying to obtain her B.A. in Psychology, specializing in Early Childhood Development.  Chynna has authored “Not Just Spirited: A Mom’s Sensational Journey With Sensory Processing Disorder (SPD)“,  a children’s book called “I’m Not Weird, I Have SPD “, and will be releasing, “The Sensory Diet: Setting Your SPD Child Up for Success”  in January 2011.  She also runs a blog.

When my daughter, Jaimie, was given a diagnosis of Sensory Processing Disorder (SPD) five years ago, it was both a relief as well as a frustration to hear. We were relieved because we’d gone through two years of knocking on doors, endlessly researching her symptoms, asking questions to the experts, recording every behavior and reaction just to get the answers we needed. After watching our child suffer with something we neither understood nor could help her with, it was an incredible relief to finally understand what we were dealing with. The frustration, however, was that even though we had the diagnosis, we weren’t able to get Jaimie into the right treatment program right away because she didn’t fit neatly into any of the categories that would have given her the “code” she needed for program qualification or coverage for any treatment program. This led to even more research, interviewing and door-knocking but we finally got on the right path.

The number one thing parents need to do is arm themselves with information—not just about SPD but also how to get their child the specified help she needs. Here are five things no one told us about SPD but that other parents can take with them on their own journey:

(1) There are seven sensory systems. The number one thing parents must understand about SPD is that there are seven sensory systems. We’re taught from Elementary school that there are five sensory systems. We learn all about the senses of sight, hearing, taste, smell and touch. But there are actually two more systems that aren’t discussed. Here’s a short breakdown of all the systems:

• Auditory: This is our sense of hearing. It involves not just what we hear but how we hear and how we interpret sounds. (This sense is closely related to the vestibular system.)
• Olfactory: This is our sense of smell. It’s actually the only sense that doesn’t need to make pitstop at a specific processing area in the brain before telling the body how to react. The sense of smell can be a powerfully emotional experience because we often connect certain scents with memories. It affects what we’ll eat, what we’ll play with, who we’ll get close to or even play with.
• Visual. This is the sense of sight. This involves everything we see but also how our brains interpret what we see. Because the eyes use muscles to adjust to light (which lets us focus on objects), it’s closely related to the vestibular and proprioceptive systems.
• 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 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 on 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 safe touching and being touched.
• 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 help us with maintaining proper head motion (Helping 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 affect speech and eating (tongue, jaw and mouth muscles), writing and hand grip (fine motor skills) and muscle tone (gross motor skills).

See? There are seven. We always knew there were other problems with Jaimie but until we got her into SPD therapy, we didn’t know the names of the other two systems. Parents need to learn about, understand and inform about the vestibular and proprioceptive systems. Often, a child’s body desperately needs input for these systems too but isn’t getting it—or the right kind of input—because people don’t know about them. Get the word out!

(2) Coverage for treatment isn’t always there. This is a real frustration for parents who can’t afford the, often, rather expensive 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, will 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 SPD Foundation to reassure any questions or doubts they may have.

(3) SPD can be treated. Some children will live with SPD all of their lives while some with milder forms of SPD “out grow” their sensitivities. But all of these children learn to ‘reconnect’ their brains to process sensory information effectively through specific treatment with a trained occupational therapist (OT). OTs expose children to sensory stimulation through play and fun activities so they learn how to tolerate and cope with the stimulation. Knowing that SPD can be treated offers parents hope for their child’s future—an assurance that their child will still be able to live a productive and happy life.

(4) It’s a long road. One thing that we didn’t realize was that treatment can be a long road with many bumps to endure. We knew the areas Jaimie needed help with but finding the exact things that her body craved was the challenge. Parents need to remember that their sensational child’s needs will change from one day to the next and so will the tools, exercises and activities that their body’s need to calm down or get going. It can be frustrating, believe me I know. But parents should be patient and work with the OT, try different treatment methods out there, have options to offer their child and go with the flow. Eventually, the child will be able to tell his 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’. Once parents understand what SPD is, how it affects their child and what their child’s exact needs are, they need to be able to go out there and advocate for their child in the community. When they are younger, children with SPD depend on their parents to inform others about their disorder so they get what they need to function effectively. What I often forgot about in the beginning was that advocating for Jaimie meant that I need to not only tell people what Jaimie’s struggles were but I also needed to tell people what her strengths were. We don’t want people to see our child with an SPD label stamped on their foreheads. These children excel in areas too and we need to have those out in the spotlight as well. Advocacy is fighting for our child’s welfare and rights, that’s true; but it’s also about raising awareness through giving information, discussion and getting people talking. Getting people to see the child as a whole is what advocacy is all about. Besides, we need to be teaching our child how to advocate for himself one day so 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 don’t understand the outbursts or what they may have done to trigger them or why their sister needs all the special toys or tools or why they have to have so much extra attention. We try including our other children in all that we need to do for Jaimie because, ultimately, they need to understand too. They may have to explain why Jaimie reacts the way she does sometimes or be asked why their sister needs headphones and sunglasses when she goes out or why Mama is pressing or massaging her 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.

And that’s an amazing gift.