This was my guest blog for http://www.hartleysboys.com/ and SPD Awareness Month

Charlie

By Christina Morris, mom and blogger atSensing Madness

Life is an accumulation of what you do. Mick Jaggar said, “It’s all right letting yourself go, as long as you can get yourself back.” Doing what you want is a strong impulse made even more difficult when you have a neurological disorder. The story of Charlie has been one of trying to find a balance. We know Charlie is very bright but we have been so worried about his education because he has Sensory Processing Disorder. We have thought, “Only a very special teacher will be able to help him.” So far, he has only had us and we make progress most of the time, but it’s not always pretty.

Charlie is our five-year-old middle child. He has an older brother, Cameron, who is gifted, and kind, and a younger sister by seven months, Coco, who is showing signs of being advanced. Charlie was adopted when I had just become pregnant after a few years of trying.

Early on, we suspected that school wasn’t ready for Charlie – he was so fast, he had to touch everything, and nothing could satisfy his curiosity for long. One minute he was up on the counter with a butcher knife, seconds later he was on the carpet, prying open a can of soda with a screwdriver. We had to keep everything away from him. I can even make an alphabetical list: A – appliances: refrigerator, oven and microwave locked, toaster unplugged. Yes, even the toaster. B – bathroom: door locked, or else we would be splash time in the toilet or rolls of unspooled paper all over. C – cat, poor, poor kitty. You get the picture. He reveled in the way things smelled and felt. Luxuriated in it. I marveled at his reaction in the bathtub, carefully picking up the bubbles, slowly putting them to his nose, and then inhaling deeply before the his hand got too close and he smashed the bubbles on his face. We made a few trips to the emergency room because of Charlie’s tendency to eat lotion. I think we have since surmised that he didn’t mean to eat it so much as smell it and feel it. We made sure to visit the park daily, bathe frequently and always have chew toys and pacifiers on hand. While he was always looking for input, he would also fight you for space. There were a few people, me included, who leaned in for a kiss and instead got a fist in the kisser. It was hard to communicate with him. He didn’t often hear and/or understand “no”. I remember becoming the mom who yells and spanks. His out of control was my out of control. When the house was calm, we were on eggshells to keep it that way.

At two, he wanted to follow his brother to school. He got a backpack, filled it with toys and walked around the house wearing it, waiting, impatiently, to be taken to school. When we found a preschool for him, the reports from his teachers weren’t particularly complimentary: “He doesn’t stop.” “He can really keep you on your toes.” “He took off his own dirty diaper and gleefully ran around the classroom with it in his hand.” Because of a personnel switch, they changed the class routine, something that really bothered him. He began to fight and cry when we dropped him off. We pulled him out.

That was probably one of the hardest times for us. We know he couldn’t control himself, but we were without a definitive answer or plan. Our family and friends and teachers acted like they knew exactly what to do. “Make him listen.” “Put him in time out.” “Spank him.” “That child needs to be on medication.” “He’s so smart, he’s playing you. You’re a fool if you don’t see it.” My husband and I were, for the first time in our marriage, at odds with each other. We were constantly unhappy and bickering, exhausted and frustrated. We would blame each other for the kids’ behavior or for not handling conflict correctly. We were second-guessing each other, angry, and generally unhappy. I felt miserable. I don’t believe that kids who are two years old consciously manipulate anyone; I believe they are just trying to express something. He agreed with me. But the stress was overwhelming. We were both feeling judged.

When Charlie was about to turn 3, we tried another school. Being the sensory shark that he is, he was in time-out on the first day for going into the teacher’s purse, and then later finding and squeezing the paints. He was in time-out on the second day for pushing another child. We began to hang our heads again. We didn’t want to be the parents of ‘that kid’. We didn’t want him to be ‘that kid.’

It was around this time that I heard of SPD. I recognized some of the symptoms, and a light went off. I wasn’t crazy! I knew there was something wrong, something he couldn’t control, something that we could and needed to address to get Charlie ready for school and eventually, life.

Although the school was willing to let him stay, we decided to pull him out. We were just beginning our journey with SPD and wanted to make sure he had a positive start to his school experience. We were worried that he would spend the majority of his days in time-out for doing things that were beyond his control. We needed to understand what was going on before we dropped him off at school and hoped for the best.

Our first experience with an occupational therapist was not exactly satisfying. She confirmed our suspicions of SPD but seemed distant. While she recommended therapy, she never seemed very firm about the diagnosis or positive about the outcome. “Yep, that’s Charlie,” she would say when I would comment on some behavior. It felt like any time I asked for advice, there was nothing more than agreement about the situation.

When we first realized that Charlie was suffering from SPD, we began to notice the unique difficulties he had with balance, like his posture in a swing or just falling down, even from a sitting position. Before learning about SPD, he moved so quickly all the time, we didn’t have the inclination to identify his differences; we were just keeping up, barely, and were very frustrated. He wasn’t listening, and his curiosity always seemed to lead him to the most dangerous and or maddening activities. While I was cleaning up paints he would be squeezing lotion or getting into prescriptions. He required vigilance, not just supervision. While OT helped identify some of these issues, we still had other, bigger issues controlling behavior.

After looking for more information, I found a school that I thought would be great. It was a school in an OT gym, and I thought that I had found “IT”! They worked on transitions, behavior and more. We stopped going to OT after a few weeks at the new school and for a while, it was really good. Then, they had a huge turnover in personnel and kids. His teacher was fired because she disagreed so vocally with the director after the director therapeutically ‘held’ Charlie in class one day after an aggressive outburst. The changes were ruinous for him. Within 4 months, they were managing him, not helping him.

Not long after, we found our Occupational Therapist, Diane, who has been so helpful to us. We wanted to approach Charlie’s differences intensively. We did research on Lucy Miller and considered going to her clinic in Denver, but decided we could get many of the same benefits by treating Charlie twice a week over a longer period of time. Diane tested Charlie, gave us actual detail about Charlie’s deficiencies in years and months, and in terms we could understand. She helped us to see what he was missing, recommended specific activities for us to try at home and set goals so that we could recognize his success. His tests revealed he was almost two years behind in his gross motor development and a little over a year behind in his fine motor. Our goal was to simply close the gap.

We also consulted with a developmental pediatrician who recommended medication after meeting with Charlie for one hour. I was devastated. Medication is the absolute last resort for me. On the advice of Diane, we had him tested by a neuropsychologist. She diagnosed him with ADHD as well as SPD. She also proposed medication, but gave us an alternative recommendation of neurofeedback therapy. We did the neurofeedback therapy three times a week and OT twice a week for about three months. We were very busy and while Charlie enjoyed OT he detested neuofeedback. He would get candy for doing well in OT, but he upped the ante for neurofeedback. We were at the hobby store once a week, buying models.

All we have done so far seems to have worked for us. Charlie is less oppositional today, he doesn’t have bad days at OT anymore, his balance and gross motor skills have improved by over a year, and he is almost up to average for his age group. Because of our intensive approach, I think we have progressed. But is it measurable? If he can stay in school and remain happy, that would be success.

It has been a little over a year since we have had Charlie in school. Four different schools have told us that he isn’t welcome. One of them is specifically for kids with Sensory and ADHD issues. “He doesn’t listen.” “He doesn’t focus.” “He isn’t mature enough.” “We can’t handle him.” Without recognition, he will fall through the cracks. He doesn’t “qualify” for services because he is incredibly intelligent and well spoken. Although he can’t read or write or even color, he is gifted in other ways. For example, he has a talent for tools – recently he unscrewed the hinges on the door to the laundry room. We discovered it when the door fell on my husband.

It is obvious that our journey with Charlie and SPD is just beginning. He just had his fifth birthday. He delights us with his knowledge of ships, pirates and sea creatures. He maddens us when he uses my very expensive cosmetic products and bug spray in his experiments of mixing liquids. He is unique and beautiful and I can’t imagine my life without him. Cameron, his older brother, helps him build Legos one minute and fights with him for breaking them the next. Coco, his younger sister, is either conspiring with him to get my attention or crying because they have come to fisticuffs again. My husband and I now build each other up, rather than knock each other down. That is what education about SPD has done for us. We are the special teachers and we are being specially taught. We are a family, true and whole. I know that we all love each other very much and that won’t stop. Yes, I am still worried about school. Yes, I am still explaining SPD to friends and family. But look what learning about it did for us! I am hopeful and happy, and I can think of no better way to live.

 

Please support the SPD Foundation with a donation!  All funds go to support research, education and advocacy for families like this one.

 

 

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