I'm trying a new theory

So the neurofeedback didn't work any magic this time. Culley came off the school bus grumpily demanding to be carried home, while looking down at his feet. Not a good sign. The irritability and nidging continued for the rest of the night. So, I decided to take matters into my own hands. The next morning, he woke up and came into our bed unusually early (neurofeedback can mess with their sleep) maybe because he has a cold. He took my hand and said "C'mon Mama, let's go". That is a good sign... Culley is in the building. So I dragged myself out of bed and followed him to his room where he started playing with his cars while standing on his head - that's not a good sign...Culley is trying to leave the building. I immediately got down on the floor and asked him if I could play. He sat up happily and replied "yes" and handed me a car. For the next 20 minutes I kept him engaged by coming up with all sorts of play scenarios. When Finn woke up he came in and joined the play. Yes, this was all before 7am and without any coffee on board! Go Mom!

This is how the morning went. I put in a lot of effort keeping the daily routine going (eating breakfast, getting dressed, etc...) while interjecting play that was stimulating and appealing to Culley. I could start the play and be really engaged and eventually Finn would join in and they would take over. Then I was free to make breakfast (and coffee!), pack lunches, and get dressed myself. Basically - no downtime for him to withdraw. There were a couple times when I heard the dreaded monotone verbalizing start, indicating he was going to the dark side. I immediately stopped what I was doing, got down and looked him in the eye and asked him to stop. Then redirected him to a sensory activity disguised as a job, "Can you bounce this ball down the hall and help me feed Drake?" It worked like a charm! I felt so proud of myself for finding a way to keep Culley in the real world if only for one morning.

Previously, I allowed him to go into the zone and make his noises as long as he wasn't hurting or bothering anyone. However, it seems that once he's in "the zone" he can't stop himself from making bad decisions about what is appropriate contact. Maybe if I can keep him out of the zone, by not allowing him to make the noises and redirecting him, he'll stop wanting to be there so much.

According to brain science research (The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science (Null) by Norman Doidge) , the more a person links certain thoughts with certain actions (feeling stress and smoking a cigarette, for instance) the stronger the neuron connections become, making it harder and harder to stop the connection. For Culley, he must be having a thought or feeling that causes him to want to leave reality. If he continually does just that in response to the thought or feeling, then it becomes automatic and a much harder cycle to break. However, if I can help redirect him when he's feeling that way, then perhaps we can weaken or even break that connection!
Hey, at least it makes me feel like I'm doing something to help him.

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.