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.

Second Implant Activation and Preschool Jitters

Activation the second time around was much different than the first. The first time Culley seemed to enjoy the input immediately. This time, he put his head down when the audiologist introduced the tones. He played the conditioned response game reluctantly and seemed very uncomfortable about the new sensation. Fortunately, he does replace the magnetic coil himself every time it falls off so he does want the input, just not without his "good ear" also being turned on. We're supposed to give him at least one hour a day of practice listening with just his new ear but it's been tough because after about 15 minutes, he starts asking (or finds it himself) for his other processor. So we're doing it in several small increments a day. He can't understand speech from it yet but that's not unusual since it's only been 3 days since activation.

Today is Culley's second day of full-day preschool. For his first day, his entire entourage was there - his SLP, his itinerant teacher of the deaf, school audiologist, and the assistant teacher whom he loves and all of these folks he knows from last year's half-day program. Yesterday he cheerfully said good-bye to us and my husband and I left feeling all was well. Today, he was anxious from the get-go and I see that none of his support staff is there, not even his beloved assistant. His preschool teacher (who is new this year) puts the FM mic around her neck, plugs in his adapter, then walks away. If she even turned it on, she definitely wasn't close enough for him to get the signal properly. I wanted to explain to her how to do it and tell her that she needs to ask Culley if he heard a beep but she started morning circle right away. I hung around waiting for a time to tell her but I was politely requested, via song, to make my exit. Ugh! I left Culley sitting there looking like a deer in the headlights. I was able to give the FM message to the substitute assistant who also had the deer in the headlights look. I keep telling myself that he'll make it through the day and be that much stronger for having to fend for himself. I'm going to try to enjoy my second day of freedom as much as I did yesterday by going for a mountain bike ride on this gorgeous late summer day.

As is the case too often, I forgot to mention that Finn had a wonderful first day of kindergarten. He told me that kindergarten is even better than preschool! He's so brave and self-sufficient. It's so nice that I don't have to worry about him.

Whew, Surgery Done!!

We're one week post-op Culley's second cochlear implant surgery! We went on a family camping trip Thurs-Sat. before his Monday surgery. We had a great time but I'll get to that later. We returned to a beeping answering machine with several messages from the hospital notifying us that they weren't able to get approval for the surgery from his insurance company and that we needed to call them right away. Well, of course being Saturday I was unable to contact anyone about the matter so I spent the next couple hours pacing and fretting. Then I decided to let it go and once again adopt the philosophy of, if it's meant to be, it will. It turned out that believing the surgery wasn't going to happen was much more relaxing than anticipating it.

Monday morning, I called the hospital and the person I spoke to assured me that everything was in order with the insurance. I couldn't reach any of the people who had left messages so I was a little skeptical that this person knew what she was talking about but what else could I do? First we had to head to the pediatrician so she could make sure the ear infection was cleared up before making the hour and a half long trek to the hospital (and continuing the fast that began at bedtime the night before). There was some question about the ear drum looking a little red but after many failed attempts to reach the surgeon we all decided that we should just continue on with the plan. We checked in at 1pm for a surgery start time of 2:40pm and the long wait began. The OR was running late so the surgery didn't start until 6pm!! Culley was so good and patient, Tom & Jerry helped immensely with that. Every half an hour or so he would politely request something to eat, "I want pretzel bites please", "I want goldfish please", etc...The cutest was when we were finally headed to surgery and Culley's pre-med was really kicking in he slurred, "I want chicken nugget please!" For once not being a big eater really paid off for him.

Thankfully the surgery went off without a hitch and we were back at our house at 11:30pm. Culley woke up very angry from anesthesia but that's normal for him. The next day, he complained a little about his "boo-boo ear" but after a dose of Tylenol, he was feeling much better. Just like last time, he took a long nap in the afternoon and awoke 100% back to himself! He's schedule for activation in one week.

I'm still battling the insurance company. The day after surgery, we got a message from the same woman at the hospital again telling us that the insurance wasn't confirmed. Oops, because they did the surgery anyway. There is a ridiculous misunderstanding with the insurance company that I have called and cleared up four times now. Every time the representative says, "Oh, ok, I'll go ahead and make a note. All taken care of!" Now we have this big 3 hour evaluation/Autism screening scheduled for tomorrow (the one we've been trying to get done all summer) and they're about to cancel it because the insurance company is denying coverage! UGH!! There is a supervisor working on it as I type. I don't have much faith in her either.

School starts in 10 days and I'm already worrying about the new preschool teacher, will they know how to deal with him so that he can benefit from school, will he be ok in full day and what about his IEP? Oh, the joys!

As usual, I went on and on about the stressful parts of life and didn't put enough emphasis on the wonderfully normal parts of life which definitely make up the majority. Our camping trip was a great and relaxing time! The boys got to fish and play in the water to their hearts content. The rest of our days are spent playing in the yard, riding bikes in the driveway, and just enjoying the rest of summer.

 

Second CI Surgery delayed again?!

One week to go before the much anticipated second CI surgery and the ear infection is still there! This surgery has already been rescheduled due to a draining ear infection three days before the surgery. It's been 4 weeks so I took him to his pediatrician to make sure the infection was cleared and apparently it's mild but present. She put him on oral antibiotics this time, he had drops before, in hopes of clearing it up before the surgery. It would have been nice to get the surgery done before school starts, in 3 weeks, but I'm starting to think it's not meant to be. Not right now at least.

Summer preschool is done and we're glad to not have to make the drive every week but also sad that it's done. The staff there was just so good and Culley's going to miss the other kids. We still sing the songs he learned there and we're implementing some of the strategies they used. Hopefully we can keep it up throughout the school year. His language is continuing to develop at a much quicker pace than it ever has. Complete sentences are a regular occurrence. He's showing much more interest in trying to keep up with other kids his age on a social level. Although it's a very good sign, it's sometimes hard for me to watch. These kids can only remember him as he was for the last year or so and haven't gotten used to the fact that he can hear well now and they don't expect him to communicate with them. I've seen them ignore him as he's timidly trying to talk to them. He's having to figure out how he can get their attention. I just keep telling myself that he's learning skills that will help him in the future and interfering on his behalf wouldn't benefit him.

We're getting ready for our last camping trip before school starts. I'm already fretting about the ear infection bothering him and about keeping the antibiotics cold enough in the cooler for three days. I'm sure the boys will  love it and we'll all be thoroughly exhausted and totally appreciative of our own beds when we return.

Almond Milk and SPD

Wow, it's been a busy couple of weeks. We had a great time in Ohio and Culley didn't miss a beat despite no OT for almost two weeks. He started preschool the next week so Finn, Culley, and I have been living in Denver three days a week for the past three weeks. Finn had his fifth birthday and I'm currently procrastinating making the final preparations for the party in two days.

We did do BioSET 2 weeks ago and it was really fascinating. Culley cooperated for over an hour by holding onto a brass bar while the doctor sent small amounts of electrical current into a meridian on his other palm. He seemed to enjoy watching and listening to the computer's response to each new waveform that was introduced. The results showed that he does, as we knew, have an allergy to dogs and cats but also to cattle, some molds and fungi and many types of feathers as found in down pillows. It also showed that he has some systemic inflammation and a decreased ability to release toxins from his body. In addition, he has a sensitivity to dairy :(  My boys both LOVE milk! As a treatment to clear some of the allergies, Culley had to carry around a very small bottle of energized water. It sounds like hocus-pocus but if it works, I don't care what it is. We started referring to it as his "magic water" which was not easy to keep track of, in the care of a 3-year old. I switched to rice and coconut milk as a substitute for dairy but he couldn't stand it. Next I tried almond milk on both the kids and I thought it was pretty tasty. Culley would take a couple sips and be done with it and Finn practically gagged. Oh, well, there are other ways to get protein, fat, and calcium, right?
The following week, Culley saw his audiologist who ok'd scheduling surgery for his second cochlear implant. I was hoping for the end of July so I was shocked when we found out it could be done in 9 days! We planned for him to go to preschool Tues-Thurs as usual then stay an extra night since the surgery would be on Friday. My mother, Gram, arrived this week to help out so the pieces were all falling into place. You know to worry when it all seems too perfect. After watching the fireworks on the 4th, Culley began complaining of pain in his ear, the one without the implant. Long story short, the next day we were back in Denver, it was draining fluid, he had an infection, surgery cancelled. His ENT informed us that he'd have to wait 6 weeks for surgery:( UGH!!

Well, now he can focus on preschool which is going very well. He had one day where what we're assuming is SPD (Sensory Processing Disorder) caused him to become withdrawn and act strange but otherwise the staff is pleased with his language development and level of engagement. At home, his language is finally taking off. He usually comes up with something new to say everyday so we are encouraged by that but his sensory seeking behaviors are on the rise again. His auditory/verbal therapist has been encouraging me to pursue more formal evaluations for him so we can hopefully figure out if his atypical behaviors and learning patterns are because of SPD or is there something else, like autism, affecting him? With these type of situations, it gets complicated. Diagnosing SPD is the job of an occupational therapist (we've had three), an autism screening should be conducted by a qualified child psychologist as far as I know,  and there are very few of these professionals who also have experience with hearing loss and what effects it can have on learning and behavior. The OT evaluation we had scheduled three weeks ago for two weeks from now, is being cancelled by the hospital because our insurance company cannot guarantee coverage for such a thing. First I need to jump through a number of bureaucratic hoops to even get to the point where they will revealed whether they will cover it or not. My plate is full enough and I really like his current OT, whom I'd have to discharge immediately as the first hoop. So the formal OT eval has just been pushed off my plate like a nasty brussel sprout. Instead, I'm redirecting all of my energy into pursuing the behavioral evaluation and autism screening, and this group happens to know hearing loss.  Which reminds me, there's an important phone call I need to make.

To BioSET or not to BioSET...

So during Culley's OT appointment this week, his therapist noticed the smathering of raised and red bumps on his forearms. We think they're ant bites since he'd been playing in the dirt a lot recently. He likes to get close-up to his trains and trucks as they go through the dirt so it's likely he was leaning on his bare arms and had a reaction to something in the dirt. I explained to her that he has very sensitive skin so mild skin rashes of unknown origin are not unusual for him. That's when she mentioned having a consult with a doctor who specializes in allergies at the local Naturopathic Clinic.  She referenced the connections between food allergies/sensitivities and language development especially found with Autism and Sensory Processing. Considering that his language development is somewhat of a mystery at this point and he does have some known allergies and some other suspicious reactions, such as eczema, I decided to look into it. I'd heard good things about this doctor and a technique he uses to desensitize people to their allergies. It's called BioSET and it's a system that uses energy responses to diagnose and treat allergies and many other conditions.  It's not recognized my the medical community, as of yet. Since Culley is allergic to dogs and cats, he takes allergy medicine everyday because he lives with a dog and a cat. I know, I know, it sounds awful but my husband and I labored over the decision to get rid of our beloved pets when Culley was first diagnosed with the allergy almost 2 years ago but found that we just couldn't do it. Culley's doctor, a pediatric allergist at a world-renowned hospital, assured us that it wasn't necessary to get rid of the pets as long as the medications were working for him. Drake, our Golden Retriever,  is 10 years old now so we figure it won't be long and Butters was recently diagnosed with kidney disease even though he's only 5:( So we figured we'd let them live out their lives and never get another pet. Still sad considering before my kids, my life centered around animals, being a vet tech and always owning pets. So the idea of having Culley desensitized to his allergy is very intriguing.  And since I'm always searching for pieces of the Culley puzzle, finding out if he does have a wheat or dairy allergy is also important. After a consult with the doctor this morning, I set up his first BioSET appointment for a couple weeks from now.

What else is going on? Well, we finally were able to arrange a child psychologist who works with deaf children to observe Culley during one of his auditory/verbal therapy sessions - recommended by his A/V therapist. She observed that while he doesn't have the characteristic signs of Autism, some of his behavior and learning patters are atypical and may not be attributed to his SPD. She recommended that we have a formal evaluation and autism screening done. I'm waiting for the contact info. to move forward. While I would have been relieved to hear her say that he's fine and we're already doing everything we can do for him, I wouldn't have really believed it. I feel good that my gut feeling, that something else is going on with him, is the same as hers.

We're off to Cincinnati tomorrow for a week, visiting family. I wasn't able to connect with an OT who does craniocacral massage there so let's hope he doesn't miss it too much!