What's Going On Here...Sensory Processing or Not?!

With Culley's sensory seeking behaviors (if that's what they are) on the rise again, I find myself searching the internet once again for similar stories. I'm looking for someone who can say, "Yes, that's Sensory Processing Disorder!" but I can't find anything close.

Originally, his symptoms were not text book but it was easy to see how they could be classified as "sensory seeking". Mostly he would grind his teeth, he liked to be upside-down, and he liked to push his head on me. When the symptoms subside (due to therapy or just coincidence?), he makes good eye contact, is very socially engaged, and language development increases. But inevitably, after a couple months, they reemerge and every time they do, they look a little different.

Fortunately, this time his language has continued to progress but I can tell he's not learning it quite as easily as he was the last time he was "well", "stable", "organized" or whatever jargon I feel like using though it doesn't matter because no one outside the community of sensory processing will understand it. This time he's showing one classic symptom of SPD in the seeking form and that is that he's been mouthing things. It started a couple months ago with chewing on toys which he'd never done before. Then it progressed to putting his hands in his mouth and chewing the thumbs on his mittens. That all stopped but twice last week he wanted to lick his brother in the bathtub! By his OT's suggestion I bought a handful of oral motor toys, things you have to blow into to make something happen. I have to say though, if that's the extent of classic symptoms, it wouldn't be enough to classify him as having SPD.

The "Nidging"
The most noticeable, and annoying, thing he's been doing is, well, annoying. Instead of pushing his head on me, the behavior has evolved to "nidging", as we call it. He tortures me and his brother the most with this behavior but also gets his dad when he gets the chance. "Nidging" consists of any and all of the following behaviors:

• putting his hand over your mouth or eyes and otherwise touching your face 
• pulling one strand of hair off your head 
• hitting, kicking, pinching, pulling or pushing but in a playful way
• generally invading your personal space in an offensive manner                                                                                                                                                      

While he's performing these acts of annoyance, he has a tight-set jaw and is making strange repetitive noises like "oo-oo-ee-ee". It makes it almost impossible to be in his presence when he's in this mood. He'll go to time-out repeatedly before he finally just goes and plays by himself. As soon as he's alone, the behavior immediately stops. It's as if he can't stand to be close to us without doing these things. He can go for hours without showing any of these signs. During which times he plays normally with me and his brother. But he can also go hours where it just doesn't stop. Usually some intervention like directed play, swinging on the sensory swing, play-dough, or going outside to play will abate the behavior during those activities but if he's really "disorganized" as soon as there is down time, he's back at it. Associated with these behaviors is defiance and that is common for SPD. During the months that he's "normal" (not showing repetitive odd behaviors frequently), he's very easy going, happy, and agreeable. On the other hand, when he's "unstable", he's often contrary and agitated. It breaks my heart because I know whatever it is that's affecting him is making him a different person. A child that is unhappy and enjoys making others unhappy.

I want so badly for these symptoms to go away so we can have the real Culley back that I will try anything. This time around cranioscral therapy just wasn't doing the magic it did last time so now we're trying neurofeedback. It's a treatment that hasn't been heard of by many people, even professionals in the medical field, but has been very successful in treating epilepsy and more recently has been used to treat ADHD. Last week was his first treatment and he responded amazingly well for the first couple hours. He was interested in everything and was asking "what's that?" about things in his environment that he's seen hundreds of times and never wondered about. His spontaneous language was flowing and he was very content and relaxed. By that evening he was in full nidge-mode and stayed there until he went to school the next morning. Fortunately, he doesn't nidge anyone at school but they do notice increased defiance, lack of focus, and increased fidgeting. He came off the bus that afternoon smiling and proclaiming, "Mommy, look what I made!" The old Culley was back!

The rest of the week went the same way. He was on and off. But when he was on, he was really on! We are now 28 hours post second treatment. His response so far is similar to last week's. He was calm and relaxed for the first 4 hours or so but gradually became more and more agitated until he was again in full nidge mode until he went to school this morning. He's at school now and I'm holding my breath and my heart, waiting for my beloved son to return.