Tuesday, November 14, 2006

Lost in Translation

I've been noticing lately that there are certain things that I just don't blog about. I seem to hold back, filter, make palatable, water-down ("what?!," you say, "this is palatable and watered-down?! egads!!) and I wonder why I do it (besides the fact that my Granny reads this and I am such a total dorky slob with a raging potty mouth that must be controlled).

Por ejemplo: not blogging about our life with The Boy and the things going on with him. Maybe I just get so "talked out" to friends, family, and therapists (his, not mine, although . . .) that I just have no energy to continue the conversation with my fingers. Or maybe I get frustrated because we really are still trying to get a handle on him and I seem to fail miserably some days. Whatever the reason, I find myself wanting to write about a breakthrough, or even just a good day, and then I realize that I haven't even hinted to you what I'm talking about and you might think that my evil twin had finally found me and taken over my blog. But I'll put these reasons aside and use this post to tell you a bit about my Boy:

The Boy has something called Sensory Processing Disorder, and if you've never heard of it, you're not alone. I had never heard of it either, and many physicians are also unaware of this condition. He hasn't been "officially" diagnosed, mostly because SPD is not recognized as a "real" diagnosis by the medical/insurance community. That makes it mighty hard to get the kind of help he needs, or even to just be taken seriously.

But what is SPD? In a nutshell, SPD is a neurological disorder characterized by poor detection, modulation, discrimination or responses to sensory stimuli. People with SPD have difficulty managing sensory information that is received and interpreted by the brain. Basically, his senses work just fine, but the wires carrying the information from his senses to his brain are crossed, so he doesn't correctly interpret the information. The messages really are lost in translation.
What's tricky about SPD is that some people are hyposensitive, meaning they crave tons of sensory stimulation in whatever way they can get it because their senses are not relaying the hey, enough is enough! message to the brain. And some people are hypersensitive, meaning their senses are so overstimulated that even the slightest touch or noise can seem like the hardest or loudest thing they've ever experienced. And to make it even more confusing, some people are hypo with some senses (like taste or smell) and hyper for others (like touch or sound). But wait, there's more!! In addition to the five "regular" senses, SPD also deals with the vestibular sense and the proprioceptive (pro-pree-oh-sept-iv) sense. Vestibular basically refers to balance, and proprioceptive refers to the network of joints and muscles and how they work to let us know how to move our bodies in space without being conscious of the fact that we are doing it (for example: sitting down in a chair without looking at the chair, or gauging when to step up onto a curb without looking at it or stopping at the curb before stepping up on it).
People with SPD can have problems in all of these areas, or just one or two. The Boy has the most difficulty with the auditory sense, tactile sense, and vestibular and proprioceptive issues. He is almost completely hypersensitive, meaning that his senses get completely flooded with even the slightest stimuli and are unable to relate information to his brain to make his reactions appropriate to what we would consider "normal" noises, touches, movements, etc. There are certain noises that he cannot tolerate, like the ocean, a gym where people are playing basketball, voices over the baby monitor, and he has vestibular and proprioceptive dysfunction that make even a short car ride feel like he is on an out-of-control roller coaster. This is a good description of what some people with SPD feel like, and I know much of it is true for The Boy. This is just the tip of the iceberg as far as SPD and how it affects my son. (And I won't even get into his stimming behaviors in this post.)

But, Aimee, you say, there are certain noises or fabrics that I can't stand, and there are certain foods that I won't eat, so what up with that, homegirl?
I'd say that you're correct because everyone has a shirt with a scratchy tag they've cut out, or a food that, under pain of death maybe, will not pass their lips. For me, pulling the solid styrofoam packing material out of a brown box makes me want to go all carnival freak crazy, that's how much I hate that noise. BUT, (and this is a biggie) if I hear that noise, it does not send my whole nervous system into a tail spin, thereby shutting down my ability to process any other information -- and that's what happens with The Boy.

And that brings us to the therapy -- SPD is not curable, but it is manageable, and the course of action for it is most often Occupational Therapy. The Boy goes to a combined speech/OT session once a week, and he may start an additional OT session per week in the future. OT teaches him how to cope, how to not lose it over a car ride or a sudden noise, how to arrange his body in space, how to just feel better.

We are blessed because The Boy's on the mild end of the spectrum, and he is responding very well to OT. Unfortunately, because SPD is not recognized as a real medical condition, lots of kids do not get the diagnosis and treatment they need. Often, they are just labeled as difficult kids, or as ADD/ADHD kids, when they are really SPD kids. I bet you've met a child with SPD, even if you (or maybe even they) are not aware of it.

So that is what I've been holding back. And now that the floodgates are open, we have passed the point of no return. You will just have to be swept along in the torrent of information, frustration, elation, and hesitation about our decisions for The Boy. What a sensation! (I had to get another -ation word in there. Had to. It's in the Former English Major Code of Conduct.)

More to follow -- you lucky, lucky people . . .




8 comments:

  1. Wow, Aim, I had no idea. While I certainly can't begin to understand the frustrations that go along with your little man's particular disorder, I CAN understand about wanting to hold things back along those lines about your children and the frustrations that go along with dealing with a child with certain needs. My own lovely young lady has ADD(hard to believe sometimes, but quite true) and while the little guy is still too young for official testing we are getting the inklings that he may follow in his sister's footsteps. Still, just like in your situation, with the right treatments it is completely manageable. I am glad that it was not overlooked in your boy and that he is getting the tools he needs for life at such a young age. Yet another shining example of what wonderful parents he has to guide him on his path :)

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  2. Anonymous9:44 AM

    I know that for me when this time last year we were going through education-related stuff with Primo, blogging about it was pretty cathartic.

    And now that you've done the thorough explanation of SPD, if you ever want to educate a future reader who has not yet discovereed you, you can simply link to this entry: no repeat explanation necessary!

    plus, the more people you tell, the more peple you have praying for you and your sanity!

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  3. Anonymous10:06 AM

    Thanks for sharing with us. Maybe someone dealing with this in their own home will find their way to your blog and find some inspiration. I do hope you'll share with us all the ups and downs; the more you share the more we know and can be supportive of your family and others going through this as well.

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  4. Amy Michelle10:21 AM

    Thanks for sharing, and for educating us all. I had not heard of SPD before, but I have heard of SID (sensory integration disorder) which sounds very similar -- perhaps they are different names for the same thing. I hope that you'll feel more free in your blogging now to vent, share, exult, whatever you need! Love and hugs to you all.

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  5. Thank you, you lovely, dear folks. After Rob read this post, he said that it sounded like I had been saving that for a while while, and I guess I had. It's not that I am loathe to talk about The Boy, it's just that sometimes I feel like I dwell too much on it, you know? He really is quite a happy, loving, and supported boy and there are kids who have much more serious problems than his. But I do feel better now that you know because it makes my blogging life easier, and because so many people can relate. Everyone has a backstory . . .
    love, love to all
    ps: ame -- SPD is the new name for SID. They basically changed it because the terminology and symptoms are also changing. But it's the same thing.

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  6. Anonymous11:57 AM

    I thought 6 months of infant irritability and physical therapy for my little girl's torticollis was full of frustrating torture. That was easy compared to your little man's troubles.

    Share away, Girl! The one thing I craved when I found out what was wrong with her (other than a complete recovery for my baby) was to hear from another parent going through the same thing. Tips on how do deal with it. Knowing that I'm not alone and other parents are just a frustrated. Yet it doesn't matter what other kids and parents are going through, if other children are worse off than your child. You just want your child to feel better and will do everything in your power to make things better - the agonizing torture of being the wonderful, caring mom that you are.

    -Theresa

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  7. How difficult it must be and you are BOTH handling it well, from what I've read here. Hang in there and know that God has a special design and purpose for all - you, him, the whole family.

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  8. thanks for sharing that information! I have a son with some issues, too, though we can't get a doctor to agree or help. Devon has wiring issues, too. We get great results with chiropractic and a supplement called Chlorella. The chlorella is amazing, after a month my son said he could feel what felt like a brick wall in his brain that was blocking his senses! After a few months of it his grades went from all F's to ONE F. He is way less violent and almost never has rage episodes. The chiropractic actually does the most good for the rages. And it is a must to keep him in sports. He has to keep his body moving, when he actually has a desire to sleep 24/7. Chlorella is a whole food, so it wouldn't hurt to give it to your son, and it may help a great deal.

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