Making Sense of SPD

I tried to write my own checklist or questionnaire to enable other parents to check their child’s symptoms and to decide whether they may have a sensory processing disorder. I could not write it better than on the Sensory Processing Disorder.com website. It is the most comprehensive list that I can find of all the behaviors that may be exhibited under each sensitivity/category.

When I was told that my child may have some sensory processing problems, I did as much research as I could. I printed out the checklist, filled it in, studied the results and kept it around to refer to and maybe even checked a few more boxes when I realized that he was actually exhibiting some of the behaviors on the list that I didn’t think meant anything when I looked the first time; things such as, cracking his knuckles or the occasional head banging. I’m not sure why I didn’t think that the head banging was important, I think it’s just that he only did it occasionally. However, the times that he did, the circumstances were very similar.

The checklist helped me to really understand and anticipate his behaviors. I knew not to take him to the mall at the weekend. However, if it was absolutely necessary, I found that making a list of what I needed to buy and only concentrating on that shortened the time. Taking plenty of my child’s favorite snacks gave him something to chew on and focused his mind. The bribes or treats thing at the end never really worked. If the noise or lights bothered him he was going to act up whether he got his treat for ‘being good’ or not. He couldn’t help his reactions, ‘being good’ was asking the impossible here; his environment was painful for him so getting a treat was irrelevant. It would be the equivalent of telling an adult not to scream if they trapped their fingers in the car door.

My child dislikes hair brushing and nail cutting so I find that if I do it while he’s watching TV it doesn’t bother him as much. I even clean his teeth sometimes in front of the TV, not just because he complains less about the physical act of cleaning, but also because if I’m running late we don’t have to go through the whole countdown thing to help with transitioning. “In 10 minutes we are going to clean our teeth” “In 5 minutes we are going to clean our teeth” etc. It’s not a solution but it makes life easier.

I learnt that if my child is sensitive to something, say he doesn’t like his new sweater, he says it’s uncomfortable, and has got distressed about it and he doesn’t want to wear it, his other senses will be heightened too. He sits in the car on the way to school clearly bothered by the sweater, pulling at it, but also complains about his siblings making too much noise or the sun shining through the window.

Sometimes if he gets so distressed with his environment and is bothered by the noise/lights/close proximity to others/waiting in line such as at the mall, he has trouble regulating his body temperature, so will usually feel cold even in hot weather. Consequently, I always make sure I carry a sweater for him; he likes one with a hood, where he can hide away.

There is always a reason why my child does or doesn’t do something outside the obvious explanation. Because of his young age of 5, he doesn’t always understand why he is feeling the way he does. He also finds it very hard to talk about his feelings. Not understanding his emotions means he cannot compensate for them. To give an example, one Saturday night we were eating dinner in the kitchen (a smaller, brighter lit room than the dining room) we had extra guests and we were all laughing and joking, kind of fooling around rather loudly. My child decided halfway through the meal to pick himself up without saying anything and walk away from the table to another room and put on the TV. At first, you may think that he was being rude, perhaps disrespectful and what about eating all of his dinner? I realized that I had missed the obvious signs; he had gone very quiet (he could not concentrate on the conversation), from time to time was touching his ears to block sound and was squinting to avoid the lights. It was distressing for him to be in that loud, brightly lit environment, in close proximity to people and consequently the noise. To exasperate his sensitivities he did not understand the humor. However, sensory defensiveness does not account for all of his avoidance behaviors, not understanding humor at the dinner table, or his resistance to engage in tasks that are not interesting to him, are not due to sensory regulation issues.

For my child, his difficulty regulating sensory input can lead to an overly stimulated and more disorganized state. Think about it, if you were anxious, nervous or didn’t like to be around people on a particular occasion, maybe your shoes hurt your feet or your pants were too tight after a big lunch, you may have become uncharacteristically silent or very talkative, probably on edge and certainly keen to get home. My son generally becomes intolerably loud, climbs, jumps, even laughs. He does not cling or cry.

It has taken me a while to understand this. It has taken a while for other people who come into regular contact with my child to understand this. It is not easy to understand. The question is how do you truly know when he is having difficulty managing his sensory input and when he is just being a 5 year old boy?

The Five Senses: Vision, Hearing, Smell, Touch, and Taste.

We can recognize a friend instantly. We can recognize thousands and thousands of smells and distinguish millions of shades of color. We can feel the lightest touch of a feather or hear the faintest sound of a bee buzzing past us. It seems so effortless, we don’t even think about it. Yet everything that we hear, feel, see, taste or smell requires billions of nerve cells to flash urgent messages through cross linked pathways and feedback loops in our brain.

I learn't that many children with Asperger’s syndrome, who are bright and capable, can have difficulty managing their sensory input. Like my son, they may be unable to go to the movies or a parade, sit through a show, or go to their friend’s birthday party. I discovered that my child has a number of sensory processing difficulties and these impacted his daily life. I discovered that with children who are gifted and those with ADHD or Autism, the prevalence of Sensory Processing Disorder (or Sensory Integration, as it is sometimes called) is much higher than in the general population.

So what exactly is it all about? Here is a definition from the KID Foundation (The Foundation for Knowledge in Development, now known as the SPD Foundation), which specializes in research and treatment of Sensory Processing Disorder:

Sensory processing refers to our ability to take in information through our senses (touch, movement, smell, taste, vision, and hearing), organize and interpret that information, and make a meaningful response. For most people, this process is automatic. We hear someone talking to us, our brains receive that input and recognize it as a voice talking in a normal tone, and we respond appropriately.

Children who have a Sensory Processing Disorder (SPD), however, don’t experience such interactions in the same way. SPD affects the way their brains interpret the information that comes in; it also affects how they respond to that information with emotional, motor, and other reactions. For example, some children are over-responsive to sensation and feel as if they're being constantly bombarded with sensory information. They may try to eliminate or minimize this perceived sensory overload by avoiding being touched or being particular about clothing. Some children are under-responsive and have an almost insatiable desire for sensory stimulation. They may seek out constant stimulation by taking part in extreme activities, playing music loudly, or moving constantly. They sometimes don’t notice pain or objects that are too hot or cold, and may need high intensity input to get involved in activities. Still others have trouble distinguishing between different types of sensory stimulation.

Research by the SPD Foundation indicates that 1 in every 20 children experiences symptoms of Sensory Processing Disorder that are significant enough to affect their ability to participate fully in everyday life. Symptoms of SPD, like those of autism and most disorders, occur within a broad spectrum of severity.

An important thing that I learnt from Out of Sync Child (see my recommended reading) was that a child with a sensory dysfunction does not necessarily exhibit every characteristic of the disorder and can be both over- responsive and under-responsive. For example, my child can over-react to unexpected loud noise and will cover his ears with his hands. He is also a sensation seeker and is constantly hanging upside down on the sofa and fidgeting almost all the time. Also, the child may show characteristics one day but not the next, which can be very confusing as a parent. One day my child is covering his ears because we are all talking so loudly but then he walks over and turns on the tv with the volume high. Inconsistency is a hallmark of every neurological disorder.

Sensory Processing?

It was 2004, my daughter was 3. Blissfully ignorant, I could not understand why parents found it so hard to parent: all the mother’s meeting in parks or coffee shops discussing everything from ways to get their child to sleep through the night or eat more than just goldfish and string cheese to comparing their development: whose child was sitting, crawling, walking or babbling first. I couldn’t understand what was so complicated about it: that was, however, until my son was born.

I began to think it was just my inability to cope with a second child or that boys are just more difficult than girls. I thought that I did everything so well the first time around I couldn’t figure out why my ‘skills’ weren’t working so effectively this time.

My baby cried – a lot! To be more specific, he cried when he left the house and went outside. He cried until he returned home. In fact, when he was 3 months old I took him on a 12 hour plane journey to show him off to extended family and he did not stop crying until he returned on the 12 hour plane ride 3 weeks later. So much for ‘showing him off’! I still remember frantically pushing him in the stroller around all the parking lots, trying to calm him, while the rest of the family, my oldest child included, visited the zoo, park or restaurant. Back home, I counted endless occasions when we had to leave a full shopping cart in the grocery store unpaid for, when we had to leave another child’s party before the candles were blown out or when he just screamed all the way through the trip to the mall. Each and every time, I said “never again”.

To his credit he was reliable and adventurous with food. He ate 3 meals and 2 snacks a day at precisely the same time every day. He very easily began to love all fruits, vegetables, meats and fish. I was so delighted that he took such an interest in food that I spent every morning in the kitchen cooking and puréeing fresh fruits and vegetables and bagging up small portions to freeze. As he got older I added meats and fish and made casseroles and pies. I’d never spent so many hours in the kitchen in my entire life and he never left a tiny morsel on his plate. It was so satisfying.

He also knew faithfully when he should sleep and nap. He liked to be swaddled tightly as a young baby and then when he was older he graduated to a sleeping bag. His sleep pattern was remarkably regular, going to sleep and waking at precisely the same time every day.

It was only when he was 3 years old that I began to notice other, more disturbing, consistencies in his behavior. He was always turning off lights and one day when he got a new pair of cool shades he wore them all the time, even inside, at first I thought it was just because he liked them. Then he started to become really distressed when he was in an environment with bright lights. I began to wonder why he cried or covered his ears with every loud sound, why he didn’t like me talking to someone even 15 feet away while he was concentrating on another task. Crowded places bothered him so much that it usually led to major meltdowns in public places.

At the age of 4, he didn’t like to be touched. He didn’t seek out hugs or cuddles from his parents. His younger baby sister could simply brush gently past him and he would lie down on the floor crying inconsolably as he tried to rub off his skin where she had touched him. He also took an instant dislike to certain pieces of new clothing claiming them ‘itchy’ or ‘uncomfortable’. The experience of simply ‘trying them on’ would leave him crying hysterically.

At the age of 5, a once keen observer, he became an excessive risk taker: jumping, crashing and climbing, without regard to his or anyone else’s safety. His food choices began to narrow until he would eat just a few things. What were once his favorites now became his most detested. Worst of all for me, and him, was that it began to take hours to settle and calm him enough for sleep. He was pale and eyes dark but he still claimed not to be tired.

It had become almost impossible to understand and to cope with. Was it just a phase? Did he simply need more discipline: was he testing the boundaries? Was it my fault, was I letting him control me? Surely, it couldn’t be so easy to raise one child and so hard to raise another?