SPD? That sounds made up...

...and that is what Dan and I thought when Rowan got his diagnosis last year. But we soon delved into books and resources, reading accounts written by parents and providers who could have easily been writing about our son. Here is an overview of SPD from spdfoundation.net:


"Sensory processing (sometimes called "sensory integration" or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or "sensory integration."

Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.

One study (Ahn, Miller, Milberger, McIntosh, 2004) shows that at least 1 in 20 children’s daily lives is affected by SPD. Another research study by the Sensory Processing Disorder Scientific Work Group (Ben-Sasson, Carter, Briggs-Gowen, 2009) suggests that 1 in every 6 children experiences sensory symptoms that may be significant enough to affect aspects of everyday life functions. Symptoms of Sensory Processing Disorder, like those of most disorders, occur within a broad spectrum of severity. While most of us have occasional difficulties processing sensory information, for children and adults with SPD, these difficulties are chronic, and they disrupt everyday life."

This disorder can affect different systems of the body. With Rowan it's mostly auditory. Certain sounds will send him into a violent and explosive tantrum. The other main system affecting Rowan is his vestibular system. My definition of that is your bodily awareness in relation to gravity. So he is fearful of heights, descending stairs, sitting on counters, etc. Recently we found out that an out of whack vestibular system also effects emotional regulation. This is where we are stuck now. Rowan lacks coping skills when upset by something, whether it's a toy not working the way he wants or being told no. His brain does not reason with itself of how to solve the problem. Rather, it immediately goes into fight or flight mode, resulting in hitting, throwing objects, kicking, scratching, biting. So in essence, I look like an inept parent in public, which is fun.

Another thing we dealt with, which Rowan is working through quickly is a language delay. He finally is catching up to where he should be. I try to imagine how it must have been for him, his world so disorganized, bombarded with crazy sensory signals, and not being able to tell anyone about it. Man, that would piss me off too. He still can get set off by things, but will cover his ears, or say "too loud.". This is a huge step, compared to how he used to be.

SPD is related to autism, but not on the autism spectrum. My understanding is that most people who have autism have some form of SPD. But you can have SPD without having autism. Rowan does have behaviors that "look" autistic: the speech delay, withdrawal, covering his ears. For a while he was fixated on certain toys and repetitive play. As his language has developed, that went away. Recently we had him assessed, looking for signs of autism, by the Scottish Rite Clinic in Duluth. They do not think he shows the classic signs...basically too flexible in his thinking and outside of his own world enough. We are pursuing some other help to assist us with Rowan's behaviors and tantrums. He is also in the process of being assessed by Duluth Public Schools so we can get services from them. We also see an occupational therapist once a week.

Living with Rowan is having to reinvent the wheel every moment. It is having to be constantly creative and engaging. Everything I thought I knew about parenting? Bogus. But...as these things usually go, it comes with some perks. Rowan has an AMAZING imagination. At any minute we can be tigers in the jungle, trains on a track, snowplows, feeding our horse (dog) on a farm. No one can hug or cuddle like Rowan.He just melts into you. He is SO TUNED into sound, he can imitate anything he hears. His brother is a great drummer, but Rowan beatboxes. He doesn't need a drum kit, he sounds like one. He is extremely visual, and amazingly passionate.

The next few weeks will bring more assessments are more information. Perhaps the diagnosis will change, perhaps he will get more services, perhaps not. Here is what I know: I already know what I love about Rowan. Any label given to him is not going to change that. His SPD is going to make me a better mother, teacher, person. Rowdy Buddhist master, indeed. He keeps me real, and in the here and now. And I love him for that.