The Bean

Beginning at age five, a sudden change took place with Bean. I remember joking that I wasn't sure what she wished for when she blew out those candles on her birthday cake, because it must have been time out. It was, as if, that very day her behavior did a 180. My easy going child, suddenly could not cope with everyday life. At all. Years later when we had a diagnosis, I would realize there had been warning signs. Until then, we were unaware that Bean had anything out of the ordinary.

We first picked up on Bean's behavioral symptoms. The child who breezed through the terrible two's became consumed with meltdowns and tantrums. At times, she is violent. She is defiant. She has no control over her emotions. Something was clearly going wrong. We were told time and time again that we were expecting too much, that we didn't understand what children of this age should act like, that this was normal. We knew, however, this was not normal. It wasn't normal behavior for her. It wasn't normal behavior for any child. This was different. This wasn't a simple fit. This wasn't a teachable moment. This was serious.

By halfway through Bean's kindergarten year, she had stopped sleeping. She slept around two hours per night. It must have been affecting her, but she showed no signs of sleep deprivation. Instead, she became more hyperactive. That same year, the headaches had started. Within a few months, Bean was diagnosed with migraines. We were hopeful that breaking the migraine cycle would help Bean sleep again. It did not. The one thing that did come from her acceptance into a specialty headache clinic at our local, large children's hospital was access to psychologists and psychiatrists. In conjunction with Bean's neurologist, the psychologist identified Bean as having ADHD.

We thought this diagnosis might be the answer to our prayers. Maybe this explained the behavior and the lack of sleep? We tried some natural approaches, before we tried medication. First we eliminated food dyes. Then we cut processed sugar. Now, we are cutting back gluten. We gained some improvement with these changes, but Bean continued to regress in other areas. Friends stopped playing with her. Teachers were at wits end. Neighbors asked that she not come over. Our home life was nearly impossible. We finally gave in and tried medication.

It made Bean worse. With frayed nerves and two parents reaching their breaking point, we sought help from multiple different sources. The first set of new doctors diagnosed Bean with bi-polar disorder. Medication after medication did nothing. Even the new, fancy sleeping medications did nothing more than buy us a few extra hours. We questioned their diagnosis, and eventually left their practice. We started back at square one with Bean's neurologist. Working with our GP, they tried a non-stimulant ADHD medication. It did little to change her behavior, but for the first time in years Bean slept through the night. Within three weeks, Bean was sleeping eight to ten hours a night. At that point, we noticed a slight improvement in the intensity of the tantrums, but not the number. The ADHD medication may have helped with the sleeping, but obviously ADHD was not the main component to this problem.

It would be a family friend, with the professional accreditation to make such a diagnosis, that would pinpoint sensory issues and low tone. When I mentioned both to Bean's neurologist, we found buried in the original evaluation three years prior a diagnosis of Sensory Integration Disorder, a neurological disorder. It had never been mentioned. Only the ADHD was mentioned, which turns out to be a minor component of the overall diagnosis. Bean was immediately referred to Occupational Therapy. The findings would be quite surprising.

Bean, at almost nine, had the hand control and tone of a four-year-old. Suddenly her clumsiness, spills, and horrible handwriting made sense. Her upper body tone was also several years below normal. She tested far below normal on almost everything but balance, which she tested ahead. We had never noticed. We never knew how much she was struggling physically to keep up with her peers.

The diagnosis of SID also explained many of her behaviors. The meltdowns getting dressed? Solved by warming her clothes prior to getting dressed, a trick we learned from other SID parents. The inability to read social cues, the over reactions to seemingly insignificant events, the inability to maintain composure all became predictable once we knew what we were dealing with. Through OT therapy, play therapy, and behavioral therapy, the Bean we know is buried down deep inside is emerging. Slowly.