Every Parent Needs To Know About Sensory Processing Disorder (SPD)

When we adopted our sweet baby boy, E, at two days old, it was the happiest day of my life. It had taken 12 long, long, painful years of infertility treatments and adoption until we became parents. At this point, my husband and I were in our mid 40s. We were terrified at the prospect of becoming parents of a newborn at our age. But, we went for it! Our journey to this point was a saga, in itself, but that is not the story I am recounting here.

E was such an easy infant that we were lulled into a false sense of security that this "parenting gig" was gonna be alright. He ate well, slept well, hardly ever cried, never seemed to mind when his diaper was dirty. We called him the 'Buddha Baby" and wondered if he would always be so laid back.

Except that everything changed, virtually overnight, when he turned 19 months old. He started hitting, spitting, throwing things, biting, had rages, destroyed property and swore at us when he learned to talk. By the time he turned 2, we sought professional help.

When he was 3, he was diagnosed with Sensory Processing Disorder (SPD). So was every other kid. It was 2003 and it was the "flavor of the month diagnosis," so we didn't believe it. Funny thing is that most young kids do have it and my kid had it in spades. In fact, everybody has some sensory issue. If the sound of nails on a chalkboard or the tags in your clothing drive you round the bend, then you have a sensory issue. Mine is loud music, the heat and hearing other people chewing ice cubes.

Anywho, it took us several years of dragging him to many more "experts" before we realized how severe his SPD was. The crazy thing is that so many of these "experts" had no idea what it is. I am convinced that there are thousands of kids in this country who were misdiagnosed with ADHD or Explosive Behavior Disorder or Autism who have SPD. Their desperate parents have cycled through a dozen different horrendous prescription medications that don't help. That is exactly what we did until we stopped giving him drugs.

You are probably asking, what is Sensory Processing Disorder (formerly known as Sensory Integration Dysfunction) amirite or amirite? It is a condition where the brain has trouble receiving and responding to the flood of information that comes through all our senses dozens of times a day. There are 7 senses with SPD, the 5 senses we all know; touch, taste, sight, hearing, and smell, plus vestibular and proprioceptive. The vestibular system includes the parts of the inner ear and brain that process the sensory information that controls balance and eye movement. Proprioception informs us of our body position in space. Receptors for this system are located primarily in our muscles and relay information on muscle length and tension.

When we finally realized this was E's main problem, we read everything about the disorder we could get our hands on. All the weird behaviors he exhibited started to make perfect sense. There was a checklist of SPD behaviors for each of the 7 senses and he had it in all 7.

Here is a video of a young boy who explains SPD very well! Please watch it in order to understand my son's behaviors.

We compared E to the "Princess and The Pea," where a woman claiming to be a princess is tested by having a pea placed under 20 mattresses and 20 feather-beds. She was unable to sleep because she felt the pea and was proclaimed a real princess. In my son's case, he could have one tiny grain of sand in his shoe and he would freak out, telling us he couldn't go to school because of the sand in his shoe. He would say his "shoes didn't feel right" and I am talking about shoes that were 6 months old that he had worn every day without a problem until that day. For years, we had to cut out every tag in every article of clothing he had. We never knew when a sensory meltdown was coming and it took years to figure out how to deal with it.

Trying to get him ready to play soccer was an absolute nightmare; between the shin guards, the long socks and the cleats, it took 30 minutes to get him dressed. The bizarre part was that once we finally got them on him, he would wear them for the rest of the day instead of taking them off after his game.

He would self soothe by spinning on a chair. When he was just a toddler, he loved to sit on a tire swing, demanding we push it as fast as it would go for as long as we were willing to push it. Every other kid would turn "green" and start crying to get off. But, E would ask you to push him faster and faster. He could sit there for hours. He is the kid that can go on the Tilt-A-Whirl without getting dizzy. Due to this vestibular disorder, we discovered he habituated to all medications. Any medications that did help...and most of them didn't...worked for a short time until he built up a tolerance to it. We would have to increase the dosage, often to an alarming rate, to achieve the same effect.

E needed a lot of proprioceptive input. We learned that "heavy work" would give him that; carrying a backpack filled with bricks or pushing a heavy wheelbarrow. Now that he is 17, he has figured out how to deal with his sensory disorder. You don't outgrow it, you simply learn to cope with it. He carries around his 40 lb backpack all day at school.

He has loved water since he was an infant. I used to refer to him as my "water baby." He would do dolphin dives in the bathtub and he seemed to forget to come up for air. It was a bit scary. He learned to swim when he was 3. He was soon diving into 10 feet of water and picking up toys from the bottom of the swimming pool. The pressure from the deep water gave him a lot of proprioceptive input.

He developed sleep problems by age 2 because his mind was working overtime. He was terrified of the dark, so he always had to sleep with a light. This interfered with his natural melatonin kicking in, so we gave him a melatonin supplement. We got him a 12 lb weighted blanket which helped him a lot. Again, for the proprioceptive input. BTW, I highly recommend a weighted blanket for everyone. I would use it when he was at school. It is like being given an enormous hug.

E has some bizarre preferences for foods. Because his sense of taste is under responsive, he would eat things like anchovy paste out of the tube, Sriracha sauce, Wasabi, Marmite, and spicy everything, to this day. When he was 10 months old, we went to a pot luck and he sat at the counter for an hour eating tortilla chips with salsa picante...that's the stuff that will make smoke come out of your ears. The foods that he dislikes are typically due to a problem with the texture; he hates eggplants, okra, raw onions, anything soggy and he doesn't like left overs if it changes the texture when you reheat it. We have accepted this and never force him to eat anything that causes him distress.

His auditory processing disorder was really puzzling for a long time. On the one hand, certain noises would drive him nuts like high pitched sounds or echoes off walls of buildings with high ceilings. He is in high school now and he finds the noise in the hallways during period changes to be intolerable. He is allowed to use headphones to listen to his music in order to muffle the noise during changeovers. And yet, he listens to loud music with what sounds to me like men screaming at the top of their lungs. I always tell him that they will hurt their throats doing this as he rolls his eyes at me.

E had a lot of problems with what we thought was dyslexia when he was learning how to read. He confused "p" and q" as well as "b" and d" and wrote many of his numbers backwards. We had him tested at the Illinois Eye Institute and were told he had visual processing disorder which is not the same as dyslexia. We were told that he also had something called "Star Wars Scroll Illusion."

E has done a fabulous job of coping with his SPD, mainly because we have given him a lot of support and understanding. We have "run interference" for him at all the schools he has attended. He is now at his 5th school, but it is a keeper...and he only has one more year of high school until he graduates. He would never has been this successful if we hadn't understood what was fueling his incomprehensible behaviors and got him the help he needed.

The point of this article is to raise awareness about sensory processing disorder. I hope at least one other parent reads this and finally understands their child's inexplicable behaviors. I am convinced no child is bad; they just do the best they can to cope.