An Unexpected Blessing - How SPD became part of our lives

Many people have asked me for more information about Sensory Processing Disorder, and how we came to know that our son L would be living with this. Since he was identified as having SPD 2 years ago, I have wondered how much to share publicly about his struggles and successes, since it is ultimately his story to tell. I have worked so hard to build a relationship of trust with him, and I would never want to do anything that he perceives as breaking that trust. But to the extent that SPD also affects me and our entire family, it is my/our story to tell as well, and since so many have asked about it I have finally decided to share in a little more detail (you can find previous posts about SPD by clicking on the SPD label in my right sidebar).

In typing this out I realized it was too long for one blog post, so I’m going to split it up in two. This post will deal with what SPD is, and how we began to know it would be a part of our lives. In a second post I will share about how SPD has contributed to our family’s unique dynamic, and some of the challenges we face as we all learn more about it.

Sensory Processing Disorder (or Sensory Integration Dysfunction) is an umbrella term for a wide spectrum of behaviors and processing glitches that can occur to a mild degree or a severe degree. It is often misunderstood because two people with SPD can act or react very differently, and have completely different processing difficulties. Ultimately, what all children with SPD have in common, is difficulty processing information they receive through one or more of their senses. There are the “basic 5” that we all learn in elementary school ~ sight, sound, smell, taste, and touch. But there are several others that are lesser known, such as the proprioceptive sense (a system in our joints and muscles that provides information about how we are moving or how hard/soft we are touching/pushing/pulling), and the vestibular sense (in the inner ear, it provides information that contributes to our sense of balance and spatial orientation).

Some children with SPD have multiple glitches, while others struggle in only one area. Some are sensory seekers, daredevils who need to jump, swing, even fall on purpose in order for their brains to receive adequate input to process their surroundings appropriately. Others are sensory avoiders who shy away from playdough and sand, fingerpainting and certain food textures, or rough edges on their clothing. Some SPD behaviors mimic Attention Deficit Disorder, and even some autistic spectrum behaviors, so it is often difficult to identify with accuracy. To make it even more challenging, SPD has not yet been included in the Official Big Book of Diagnoses that medical doctors use (there is a 10 year timeline I believe, of very strict protocols for testing and research in order to fulfill the requirements of a “diagnosis” and SPD is very close. I am hopeful it can be an official medical diagnosis soon.) It is usually identified by an occupational therapist, not a pediatrician.

The exact causes of SPD are not known, although it is believed that birth trauma may sometimes play a role. Our son L did experience some trauma at birth and there was a time during his first year that I feared he may have cerebral palsy. He was very late to sit up, or bear any weight at all on his legs. So much so that he was referred by our pediatrician to our state’s special ed program for infants. He was evaluated and qualified, at 10 months of age, for the program, but the professionals and I felt comfortable waiting one more month to see if he improved significantly and then making a determination. During that extra month he finally began to sit up and to try to bear weight. Once he began pulling up and standing, my fears subsided and I focused on mothering him and the other two very young children we had at the time. As time went on and he developed more into the person God made him to be, I noticed that he definitely marched to the beat of a different drum, and as a mom I simply accepted him for who he was and how God made him. I never went looking for a label, in fact quite the opposite.

When L was 4 years old our fifth child, Little Man, was born (child number 4 was 2 years old at the time, and our older ones were 5 and 7). From the beginning Little Man had difficulty latching on properly. Nursing him to 9 months was a difficult process that required lots of patience and effort (and is a whole other story!). When he was old enough for big people food, he demonstrated several severe food aversions that gave me pause. My friend Laurie, no stranger to SPD, suggested I read the book The Out of Sync Child, with Little Man in mind. I realized about 3 pages into the book that this was describing son L perfectly. I will always be grateful to Laurie for her book recommendation, and to the Lord for using Little Man’s struggles to make me aware of L’s. Little Man, it turns out, just had a huge independent streak that showed itself early. :-)

I devoured the book, prayed, cried, searched the internet for information, grieved, wondered about his future, worked through feelings of guilt and anger, prayed some more, read some more, came to a place of acceptance, and my practical nature kicked in. My husband and I found an occupational therapy clinic near our home that specialized in SPD. We called and made an appointment. Filled out an extensive questionnaire, took him in for an evaluation, spoke at length to his therapist, and came away with a basic understanding of how SPD was affecting him, and what our plan of action should be. All within less than a month! After that he received weekly therapy for 6 months, until our money ran out, and I met regularly with his therapist to discuss therapies we could do at home, and specific ways to target his problem areas. At the same time, I continued reading parenting books and the Bible, praying, and asking God to fill up what I was lacking and make me the mom L needed. It has been quite a roller coaster ride, and I am deeply grateful not only for our son, but also for God’s faithfulness to us as we began and now continue the ride.

Specifically, L’s biggest problem area is in auditory processing, which means he has a hard time processing what he hears. His ears work just fine. He can hear. But between his ears and his brain there is something like a traffic jam (which is how we explained it to him) and the messages just can’t get through efficiently. So multiple step directions are very hard for him, still to this day. For instance, getting ready for bed requires me to give him each step separately. In a noisy environment with competing voices, he has a harder time than most distinguishing “important” noise (ie, someone calling him) from “unimportant” noise (ie the sound of basketballs bouncing on a gym floor). And if I say to the air, “everyone wash your hands and come to the table for lunch”, everyone else goes running to the sink but L may or may not hear me. I have better success if I go to where he is, have him look me in the eye, speak the command directly to him in a soft, normal tone and then have him repeat it back to me.

During his first 7 years of life, when he wouldn’t come when called, or when he was still looking for his shoes and everyone else was already seat belted in the van, this was usually interpreted as disobedience or disrespect, or just general dilly dallying, and caused lots of frustration among his siblings (and, honestly, to me too). Therefore, he became accustomed to being “yelled at”. We try very hard not to actually yell at each other, but he would interpret his siblings’ comments (you’re not ready YET? What have you been doing?) as “yelling”. Over time his self esteem really took a beating. This was one of the things I felt guilty about after I learned he was living with SPD.

He also has some vestibular deficits, and is a sensory seeker, so he loves to swing, to hang upside down, to flop, and to constantly be holding some small thing as if that helps him feel “grounded”. He is almost continuously moving, which some have interpreted as ADD, but in reality is his sensory seeking nature (along with the fact that he is a typical boy!). Even the air on his skin when he moves provides useful feedback to his brain.

I found a great little squishy ball that is his “approved” school table toy. He may hold it and play with it all he wants while at the table doing school, and it has no removable parts (like legos) nor does it make noise. He also sat on an exercise ball for school, until he poked a pencil in it one day to see what would happen and it deflated. That is actually material for a whole other post! (some day!) So now he sits on a chair while saving his money to buy a new exercise ball. The constant corrections that his core makes in order to keep himself straight on the ball, provide continuous feedback to his brain about how his body is positioned. When his brain has adequate input to correctly process information, it frees him up to concentrate on the thing he’s supposed to be doing. So the exercise ball and the squishy hand ball are a great help to him during school. These are just a couple of ways we have been able to tailor his school experience specifically to his needs. Knowing about his SPD, and then learning ways to help him create detours around the traffic jam, have helped all of us so much! It has also alleviated a lot of frustration to know that there are certain things he simply cannot help. He is (usually) doing his best, even when his best looks different than his siblings’ best.

In addition to The Out of Sync Child, other resources I have found helpful are:

The Out of Sync Child Has Fun, by Carol Kranowitz

Raising a Sensory Smart Child by Lindsey Biel and Nancy Peske

Teaching the Right Brain Child by Dianne Craft (awesome dvd seminar!!)

The Brain Integration Therapy Manual by Dianne Craft (fun, 5 minute therapies our whole family can do!)

The Biology of Behavior by Dianne Craft (an audio CD discussing the biological component to behavior issues)

Coming soon, The Heart of the Matter ~ How SPD has challenged and changed our family dynamic