SPD – The light in their eyes

SPD ribbonSo, some of you who have been following my updates probably already know that my oldest son was diagnosed with SPD, Sensory Processing Disorder, earlier this year. Since then, I’ve had a mixture of emotions, but predominantly, like most parents, a desire to make sure my son gets the help and tools he needs has become priority one.

I had never heard of SPD. None of my friends or family had heard of SPD. How could this be a real diagnosis? When my son’s first pre-school expressed their concerns about the difficulties he was having, it sounded like they were sort of implying that he might have ADHD. Turns out, it was nothing quite so simple. You see, ADHD is a commonly accepted diagnosis, recognized my schools, teachers and, very importantly, medical insurance companies.

The thing about SPD, or sensory integration issues, is that it’s a relatively unknown problem. Many people, including teachers, have never heard of it. It can’t be “cured”, however when diagnosed properly, and early enough, it is possible to learn tools and therapies that can help your child learn to regulate themselves. Occupational therapy is a HUGE help in this respect, however in Colorado, as in many states, OT alone cannot be approved via early intervention. Fortunately, my son also had a speech articulation issue, so he was able to receive OT in conjunction with his speech therapy, but what about those who don’t?

I’ve sense connected with many parents who are struggling to help their children with SPD. I’ve met many more who hear my story and a light suddenly goes on, they realize their child might be dealing with the same problem. For too many years, children with Sensory Processing Disorder have been incorrectly diagnosed as ADHD, and often drugged unnecessarily. It makes me sick. What’s even worse is that if you attempt to get any insurance coverage for SPD, or sensory integration issues, you’ll almost certainly be denied. It must be classified as a “Motor Delay” or something similar for insurance to even consider it, but even then, coverage is questionable.

We had my son’s eligiblity meeting for special services last week. We were told that he tested above average in every other area and his speech therapy has been so successful. Therefore, since OT alone can not be authorized in Colorado, he did not qualify for services any longer. We knew this was coming, and as we’ve been fortunate enough to be working with a wonderful OT for the past several months, we feel well prepared to tackle these issues on our own. While discussing it with our OT however, she expressed how sad it is because so many children have this issue, but don’t or can’t receive the help they need until they’re in 1st or 2nd grade – and by that time it’s often seriously affecting their education.

Knowing what my son is dealing with, and having the tools to help him, gives me great peace of mind. I would feel very overwhelmed and frustrated if I’d had to figure this out on my own. More importantly, it totally changes how I look at and deal with his behavioral issues.

Brilliance behind SPDEveryone will tell you how important a child’s early education and formative years are, so how in the world can SPD be so easily overlooked, or in the case of not authorizing OT services, not taken as seriously as a speech delay? I’m sure those of you who deal with this can feel my pain. I see the intelligence and wonder behind my son’s eyes, that light that is the brilliance that might be so difficult for him to tap into without the right tools, and I feel lucky, but at the same time furious that there are so many out there not getting the help they need. We need to bring awareness to this condition, and it should become mandatory that these children get the same opportunities for treatment that any other special needs child would receive.

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