It's Getting Better all the Time

So I changed the title of the blog back to the original title. I guess I'm feeling optimistic these days. My little guy is just blossoming! He loves being back in his "old preschool". He attended Marion's Way preschool for kids with hearing loss again this summer, which he called his new preschool or Denver preschool. This summer the staff at Marion's Way Preschool encouraged him to take on a leadership role, having been in the same program last year. Then, just as planned, when he returned to his mainstream preschool this year, he easily assumed the same role. Now when we see his classmates outside of school he greets them openly and enthusiastically. Kids who aren't as socially developed will have to be prompted to say hello as he used to have to be. His language is exploding and his speech therapist only pulls him out once a week now. She feels that since he's so engaged in the classroom, it's more beneficial for him to stay there with his classmates. He's still got the nidgies when he comes home but I'm told he behaves very well at school. We discontinued all occupational therapy this summer since we were so busy commuting to preschool. For now, we're holding off on resuming OT since it wasn't helping anymore.

It's obvious that his understanding of the world around him and his ability to verbalize how he feels about it is progressing quickly. He's been complaining that he wants to be older, mostly since his brother is now playing soccer and he feels left out. Though he admittedly does not want to play soccer but favors baseball instead. Along those lines, he's said several times in the last month that he wants to be older so he can hear with his ears. The first couple times I told him that he'll still need his processors to hear when he gets older but after he insisted, I finally admitted to him that maybe he will use his ears to hear someday.

Neurofeedback Not a Total Bust

After another three or four neurofeedback sessions, they did seem to have a lasting positive effect on Culley. We had to go for 2 weeks between session during Spring Break since our therapist was out of town and I was nervous that he would regress. However, during the latter half of that two week period it occurred to me that Culley's "nidging" behaviors had pretty much stopped! He did have a mild but persistent stomach bug at the time so you're always wondering what other factors may have been at play. So when we resume neurofeedback, we stayed with the same protocol since it had been working so well. But alas, those two weeks marked the peak of his now pretty regular cycle and he's been regressing ever since. He's not back to where he was in February but I'm fighting the panic that he will get there if I don't do something.

I read a blog today by a person who has autism. In it he says that cycling is a normal part of autism and that there is nothing you can do but be patient and wait for the cycle to come back around. However, he also says that cycles do not happen regularly or happen for months at a time but Culley's definitely do. He's cycled 4 times since he's been diagnosed and every time, I intervene with a new therapy and the cycle seems to turn around with a week or two of beginning it (and it must be new - not one that he's done before). So do I sit back and watch him regress while I wait for the cycle to complete? I don't think I can do it.

The good news in this case is that our summer is starting which means lots of new things. Unlike most autistics, Culley seems to do well with new things. First a big road trip to Ohio, then his summer preschool starts which coincided last year with the upswing of a very long downward cycle. Out of desperation, I'm looking into the "autism diet" which is so daunting especially for a kid who is a picky eater to begin with. Funny that we tried to eliminate dairy (which is half of the "autism diet") at this same point last year. Again a desperate move in response to another cycle. And interestingly it also coincided with that same upswing that I attributed to the preschool.  Maybe it did have something to do with the diet, though I gave up on it after a month and he continued to improve until winter.

Maybe I'll never figure it out!?

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.

Yet Another Diagnosis

I haven't been ready to type the words until now. Autism Spectrum Disorder. There, I did it.

In October, Culley had his autism evaluation. We were referred to this organization because they had a doctor who had extensive experience with children with hearing loss who was also a child psychologist qualified to evaluate children for autism. We'd been trying to get this evaluation scheduled for almost 6 months. By the time it came around, Culley was doing so much better than none of his therapists believed he would get the diagnosis. But he did. On the day of the eval, he had just started a cold and was pretty miserable. He did a lot of "nice things" like shared interest and appropriate play. But I guess he did just enough inappropriate things, like not making enough eye contact with the doctor and not showing enough facial expressions, to get the diagnosis.

So, on the day he was evaluated he was on the very high functioning end of the spectrum. I say it like that because I realize that 6 months before he wouldn't have fared nearly so well, but 6 months before that he would have tested much better. Two months ago, I have my doubts that he would've gotten the diagnosis at all, but last weekend I know he would have. I know, that doesn't make any sense right? Autism doesn't come and go like that. But in Culley's case it seems to do just that.

What I used to call his "sensory seeking behaviors" which go hand in hand with his attention/willingness to connect with people and language development, I guess I can just call symptoms of autism? Well those symptoms were at an all time high when he was about 2 1/2 years old. With lots of varying OT they began to diminish and then disappeared all together by the time he was 3. Three months later and one month after his first cochlear implant, they reemerged in full force. It took 6 more months of intensive therapy (of all sorts) before they diminished again. We'll see a small sign here or there but we know when those here and theres start adding up that they're on the rise again. After a huge language explosion that began about  2 months ago, the symptoms began increasing over the last couple weeks. I couldn't get into see the OT soon enough. Luckily, most of his language had been "cemented" so he didn't lose much. He had began to finally get the hang of personal pronouns but he's lost it again. I've gone back to trying to explain who "you" and "me" are:(  The cause of the increase in symptoms is always difficult to determine. It started mid-December, just a week before Christmas break. The 19 days off from school definitely exacerbated the problem. Now that we've resumed the cranioscral massage that was so beneficial the last time this happened, school is back in session and we are seriously limiting playdates - since most of our friends don't realize that coming over for many hours while their kids run rampant, isn't appropriate- I'm confident that we'll see the symptoms subside again.

Even considering this recent setback, Culley has been doing amazingly well. He's using 5-7 word sentences, including most connecting words and I can understand him 90% of the time. He loves all his friends in preschool and calls them by name. He just had his 4th birthday!! His party was at the ice skating rink but I was too busy corralling and entertaining 14 preschoolers to take many pictures:( Since this is the first birthday he really understood was coming, we felt it important to make a big deal of it. Next year, I think we'll lay low.