Friday, November 13, 2009

How come nobody slapped us harder?

I've done some pondering this week. I know......scary thinking. I've been thinking back to the very beginning of our journey to SPD, and wondering if we missed "the signs". Primarily, signs that we should have seen. If so, what were they? And why did we ignore them?

I still remember our first trip to Mary Bridge early in 2005. Jennica wasn't yet a year old, and we were there seeking guidance for a number of minor issues. Very minor issues that, without her genetic history to point to as a basis for taking a closer look, they would have laughed us right out the door. For most intents and purposes, she was developing right on target. There were issues like not consistently turning toward sound, but it was never consistent (you had to catch her in the wrong mood) and her hearing tested fine. There were sometimes issues with visual tracking ( had to catch the mood), and a lack of interest in solid food, but once again, she was so young and she was clearly interacting and developing two-way communication skills. She was very interested in people and activities around her, so it wasn't the big "A" word........autism.

But that day, an occupational therapist introduced us to a totally new term--Sensory Processing Disorder. She retrieved a pamphlet from her office, and brought it to us in the exam room. We read it, and found it fascinating......but we were still so far from diagnosis. It would be another 3 years before we knew, but I would be willing to bet that the OT, a complete stranger, chose to give us that pamphlet because she was seeing things in Jennica, at 8 months, that were already showing the path to SPD. She had been brought into the exam to have a fleeting conversation with us about inspiring interest in solid food, but I bet.........she knew, or at least had a strong guess.

Children with SPD are, in some ways, their own worst enemy. They are so darn normal in the ways that you are told to be aware of. Even parents, like us, that were fully prepared to face some developmental "blips" along the way, due to sheer genetic history, missed things that I wish we had caught earlier. For example, her speech has always been excellent. Her eye contact is excellent. She communicates and interacts. So.......who knew that what appeared to be stubborn, strong-willed, and downright bratty at times was more than......stubborn, strong-willed, and bratty. We didn't know that persistent complaints of hunger might be more than a hungry kid. We didn't know that difficulty going to sleep might be more than difficulty going to sleep. And on and on it went. Every parent we know has a horror story that relates to Jen's symptoms! If she had presented with these symptoms and other symptoms related to physical health, communication, interaction, etc., we would have been many steps farther ahead before age four. But we were watching.......and we missed the symptoms we had because they could be so easily explained as stubborn, strong-willed, and bratty.

So now......a question. There are certainly a lot of children out there who lack good discipline. We all know that. But for parents like us, that tried to provide consistent discipline and didn't get anywhere, and then learned there was a reason for the do you know? If we, as a group of parents promoting SPD, are going to move forward in this science, how do we help other parents see the difference when we ourselves couldn't see the difference in the moment? We don't need a bunch of discipline-deprived children running around with diagnoses of SPD, ADHD, ODD, or any other neuro-developmental disorder. Nor do children with SPD need their diagnosis "weakened" by the mis-diagnosis of a bunch of kids that just need some solid boundaries. But with all of that said, if we don't identify these children early on and get them appropriate treatment, it is already a proven fact that they often become future criminals, drug addicts, and more.

I don't have the answers. But I'm facing the questions honestly and asking them.

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