Sunday, July 6, 2008

The Diagnosis, Part 2: Sensory Integration Dysfunction

When I read the recent article in Newsweek Magazine on childhood bipolar, the thing that I kept saying to myself is "This kid has SID in spades!" SID stands for Sensory Integration Dysfunction. They say "He was pulling his clothes like he wanted to get out of his skin," he covers his ears at even normal volume sounds and he was unable to have his bare feet touch the grass as a baby. Maybe they know Max has it, and are dealing with it, but the article never mentions it. They mention OCD, ADHD and ODD, but never SID.

Every child I have come to know who has neurological issues, also has SID. And Tommy is no exception. In fact, this was his first "real" diagnosis (besides reflux). Upon reflection, I can see that he showed symptoms of it early on. One day when he was a few months old something unusual happened. Tommy's room was a stars and moon theme, and I had one navy blue sheet that was at the bottom of my stack in the linen closet. I had always had a white sheet in his crib, but he had gone through the whole pile with reflux spit ups that day, and I was down to my last sheet. When I laid him down in his crib, he screamed bloody murder. He was absolutely terrified. I kept picking him up, calming him down, and then putting him in the crib again - again he would scream in absolute terror. There did not seem to be anything obviously wrong with him, and it finally occurred to me (call it mother's intuition) that it was the sheet. I got a white one out of the laundry and changed it; he was fine when I put him back down.

Even before he was a toddler, he loved the vacuum. I would have to leave it out and plugged in at all times, for a couple of years, so he could turn it on and off. He loved the hum, rhythm and vibration it provided as input to his sensory system. One day at a friend's house, her baby dropped his pacifier. I noticed she picked up a different type of pacifier and put it in this mouth. I was shocked. Then I noticed she had more than one type of bottle. "How can you do that?" I asked in amazement. "Do what?," she was confused. "Change binkies and bottles like that? He will take both?" "Yeah, he's flexible," she said. "Hum, not a word I would use to describe Tommy."

When he was about a year old, I tried to make plaster hand prints of the kid's hands for Father's Day. When I put Tommy's hand in the plaster, he ran around the house screaming like a mad man, wildly trying to shake the plaster off his hand. It was like I had put his hand in fresh dog poop. And the worst mistake I ever made was letting Sam take a bath with Tommy after he had gotten some bath foam at the drugstore. Again, Tommy was terrorized, and this time he was trapped in the tub! I grabbed him and got him out as soon as possible, but it was a while before he was calmed down.

We figured Tommy was just oversensitive to certain stimuli and that he would grow out of it. However, as he moved into preschool, symptoms persisted and evolved. He had severe difficulties with drops offs and other transitions, like coming in from the playground. He used to bury his gloves in the sand, thinking they would let him stay out there until he found them again. Auditory overloads seemed to be bothering him now also. Of course these difficulties caused bad behaviors. At a particularly dicey drop off, he got into what I now know to be a "fight or flight" situation, and when his teacher held him back, he bit her very hard.

We talked to the teachers about possible causes, perhaps he had sensory issues and needed to see an OT (Occupational Therapist). Perhaps he needed a neuropsych exam and other evaluations. But, he was too young for most of these evaluations. And we wondered still if he would mature out of these things; lots of kids in preschool can't come in from the playground or sit comfortably in circle. As we investigated the possibility of an OT eval, we found out our insurance did not cover the cost. We lived in Wellesley, MA at the time, and so I contacted the school department. Wellesley, and many schools in Massachusetts, has excellent special ed and early intervention programs due to a state mandate, Chapter 766.

But, summer was about to start, and they did not do testing or give services in the summer, unless it is already in an existing IEP to do so. Meanwhile, over the summer things changed for us, and we decided to move to New Mexico. We moved to New Mexico at the end of September that year, and the boys started a new school.

My luck, the first day of school they were making paper mâché hot air balloons. Tommy touched the goopy paper mâché and freaked out. I got called in for a conference our very first day of school. Transitions continued to be difficult, tactile defensiveness had grown into an unwillingness to wear many types of cloths, especially those with tags, only certain kinds of socks, a phobia about any type of cream, lotion, sunscreen or ChapStick. He also had publicly embarrassing blow ups when we would try to get his hair cut and severe meltdowns when we would try to clip his nails. Only one type of shampoo would do and he refused to use toothpaste when he brushed his teeth. In addition, he craved oral feedback and chewed on anything he could - cups, shirts, toothbrushes, straws, etc. He chewed a ridiculous amount of gum. And his auditory overloads were getting worse. For instance, he would start to hum or whistle loudly whenever a truck passed the car and he would cover his ears and scream when things got loud at a birthday party. It even showed up in his food choices. Only certain textures would do, and he wanted all his cooked food ridiculously hot. He would decide he liked a certain food, but then would only eat it if I prepared it.

Shortly after we moved here, I called KidPower, the OT clinic highly recommended by people I spoke to at the school. There is, unfortunately, a serous shortage of OT's in NM. The waiting list for the eval was 6 months or more. Then, after you got the eval, you had to get on another waiting list to be assigned to a therapist. We got on a waiting list and waited, and waited.

In the meantime, the school my children were attending went out of business. Unfortunately, Tommy had developed an unusually strong attachment to one of his teachers, who was also the co-founder of the school. When the school went under, she had a nervous breakdown, the beginning of which she did in front of the kids. She ended up moving to Florida, and never said goodbye.

This is when we transferred to our current Montessori school. This is the school he was "suspended" from a few weeks after starting. (See Feeling Like a Castaway: The Need to Build Community) He could not returned to school without a diagnosis and proof of improved behavior. I called KidPower and asked if my child not being able to go to school was considered an emergency (I certainly considered it an emergency), and could he be moved to the top of the waiting list? They got him in pretty quickly, and it was no surprise that he was diagnosed with severe SID. We were able to start working with a fabulous therapist right away, and Tommy went to OT as much as possible, sometimes a couple of times a week.

Tommy still goes to OT today. SID is still a significant part of his life. SID and bipolar are a powerful combination of illnesses. They play off each other like two evil villains in superhero cartoon. Unlike a cartoon though, these bad guys usually win over the hero your child is capable of being. That is, until you treat them.

For more specific information on treatments see the series of postings "All the Therapies We Have Tried".

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