What it Means When i Say We're "Working on Our OT Programs"

This is not a brief post. I felt like i need to record what we do day to day for Bode's OT programs. It is a huge part of our lives right now and i want to have it written down somewhere.

Most of you know the history of Bode and occupational therapy. In a very small nutshell, he has Sensory Processing Disorder, a very official title for something that means he's wired to be uber-sensitive to noise, activity and textures. Yes, lots of kids don't like getting their hands messy, but the intensity of his reaction to something like getting peanut butter on his hands, or spilling some water on himself was totally inappropriate and could send him into a total meltdown. He was so easily frustrated that all i heard most days was an angry, "I CAN'T DO IT!" for many simple tasks and requests. Transitions were always met with resistance ("what do you mean we have to go? I just got settled!"). Going to group activities was a huge challenge as all of the stimulation was too much for him to handle. His brain couldn't deal with kids running around, music playing, kids laughing and yelling and more all at the same time. He would stand and watch but was never able to join in. I referred to him as "reserved" and "slow to warm" because i liked those words better than "shy" and "anxious."

The older he got the more it was affecting him. He struggled to join in play, school life was hard, participation non-existent. I felt like this would be a problem that would compound over time. As the other kids continued to make progress in school and socially, Bode would have been left behind. This, stated better than i can put it, from the SPD Foundation, is what i was fearing: Children with Sensory Processing Disorder (SPD) often have problems with motor skills and other abilities needed for school success and childhood accomplishments. As a result, they often become socially isolated and suffer from low self-esteem and other social/emotional issues

These difficulties put children with SPD at high risk for many emotional, social, and educational problems, including the inability to make friends or be a part of a group, poor self-concept, academic failure, and being labeled clumsy, uncooperative, belligerent, disruptive, or "out of control." Anxiety, depression, aggression, or other behavior problems can follow. Parents may be blamed for their children's behavior by people who are unaware of the child's "hidden handicap."

So this ended up being a very big nutshell! Summing up, he started OT at a child development center when he was 2 1/2. We saw improvements and were happy to see our happy child emerge. We'd caught glimpses before ! But the work he did one day a week didn't ever stick. We were told on two occasions that he didn't need OT anymore, and would watch him slip back to his old, frustrated ways in a matter of a month or two. Vicious cycle. Then came his evaluation with Donna Bateman, a neurodevelopmental specialist. And since then, we've been doing our own sort of home OT based on her evaluation and prescribed programs. These, i believe, will most definitely "stick." We work to change the wiring in his brain with these programs and i know at some point in time, as Donna put it, I will call her to tell her "he is well."

What do we do when we work on our OT programs? Instead of the one day a week, 30 minute sessions of OT we used to have, we focus on doing them five days a week. i've chosen to give him Monday and Wednesday off, since those are both school days and Wednesday is busier with school and soccer. I don't give him Saturday or Sunday off since Doug can work on the creeping/crawling program with him and i get a break. The creeping/crawling program is the hardest one to complete and the one i give the majority of the credit for his improvements and "rewiring."

1. Creeping and crawling--We set up a track on our upstairs level made of those foam pieces that fit together like a puzzle. It goes down the hall, hangs a right to go through Bode's room, straight through the jack-and-jill bathroom and into and through Keegen's room, then back down the hall to the starting point. That's one loop and it equals about 65 feet. I tried to get Bode to wear wrestlers' knee pads too but he wouldn't. There's a lot of wear and tear so we have pants that he wears specifically for c/c. And when the knees wear out? We flip them around backwards and he wears that side out! He started with low crawl (like an Army guy) 5 sessions a day/4 meters (13 ft) each session for a total of 20 meters (66 ft), so that was about one loop. Creeping (crawling on hands and knees) started with 10 sessions a day/10 meters (32 ft) each session which was about 5 loops. He is now to the max with 5 loops of low crawl (100 meters/328 ft) and 50 loops of creeping for a total of ONE KILOMETER. That's A LOT. We know we're asking a lot of him, but we've seen the positive results and know it's worth it. We see that when we're consistent about doing his programs, they're easier to get done because he's functioning better. It's a battle when we've been off-track. The goal of creeping and crawling? To literally grow portions of the brain (the pons and the midbrain) which improves function, develops convergence of vision and establishes dominance. This is literally rewiring him. The crossover patterns of the creeping and crawling (picture how your hands and legs coordinate to do this) rewires the brain. Sound crazy? Ya, maybe. But even in the traditional OT program, we learned a lot about crossover patterns and brain rewiring. So i think that's partly why this program just made sense to me when she told me about it. It's been interesting to watch him and see the improvements in his literal crossover pattern. He was pretty disorganized and inefficient when he started. Now he's a sleek machine!. And it carries over to how he runs. He was really inefficient with his running--only his right arm would swing and he'd hold his left arm close to his body. Now he crosses over those arms in true running pattern. It's not like we've been working on his running. It's just carried over. One small way he shows me his brain is changing. When we first started, Doug would get down on hands and knees and do the loops with him because it was such a fight to get it done. We'd make it a game. We'd do games in-between cycles of loops to break it up and as a reward. Doug's knees literally bled one time so he now has his own kneepads. That's how intense this program can be. Bode is often sweating when he completes it all. Now Doug doesn't have to crawl with him. We walk behind him and read to him. Books about dinosaurs. Magic Treehouse books. We're finishing up James and the Giant Peach. I'm glad he enjoys books so much and makes it possible to make this program more tolerable for all of us.


2. Auditory Level 2--I literally blow an airhorn in his direction when he isn't expecting it. We used to do it three times a day. We now do it once a day. The goal is to create the ability to hear and respond fearfully to a loud, sudden, threatening sound. I was surprised he needed this program. I expected him to jump out of his skin when Donna blew the airhorn during his eval. But he just mildly started and looked at me with a grumpy face. When i bought the airhorn, the girl at the checkout asked me if it was for a graduation. I debated telling her why i bought it or just saying yes. I told her it was for an OT program. That we blow it to stimulate the startle reflex in kids. She paused and said, "Huh. That's kind of mean." It does seem so but it's to stimulate what could be a life-saving reflex in some kids who don't respond like they should. If a car is hurtling down the road toward my kid, blowing his horn, i want my kid to jump out of the way. Not just look at it with mild, annoyed curiosity. Anyway. I warn Keegen that i'm going to blow it because he cries and carries on and says, "You're MEAN, Mom!" if i don't...


3. Sensation Level 3--This is the program that is a lot like the body brushing we did with traditional OT. I have two boxes of textures, one smooth and the other rough. You use two contrasting textures and rub all over his body. Rough then smooth. Ten sessions, so i just sit with him while he watches a video and do all twenty textures. The goal is to create the ability to feel and appreciate pleasurable and unpleasurable sensations in the appropriate length of time consistently throughout the entire body. With traditional OT brushing, i was told to avoid sensitive areas, like inner thighs and bottom. I mentioned this to Donna, thinking this is what i should do with this program, and she basically thought that was silly. I swear, brush his bum for a week and he was pooping on the potty. If only i'd known that's what it would take! ;) His issues with getting hands messy etc. are non-issues now. One great memory i want recorded was when, just a couple weeks after we started this program, his cousin ran past him and bumped him, which caused him to spill most of his water all over the front of his shirt. I watched him and held my breath waiting to see what his reaction would be. Would he flip out? He didn't. He looked at his glass, put it on the table, brushed his hands across his shirt, and went running after her. BEAUTIFUL. I was thrilled.


4. Olfactory--This is kind of a weird one to me. During his eval, Donna had B smell a bunch of smells. Some good, some stinky. He said they were all stinky. We now present him with three different smells three session a day. We change the smells every three days. One smell is pleasant, one unpleasant and one that he can taste. So an example of what we've done: watermelon, dogfood and peppermint oil. Peanut butter, sour milk and cloves. Etc. The goal of this one is for him to become appropriately aware of smells and to stimulate the amygdala, thereby improving emotional growth. Basically, the amygdala is in the midbrain and is "lower function". You improve it and you improve the limbic system above it (higher function). The limbic system houses our emotional stuff. How's that for technical. Anyway. I have seen that when i stopped doing this program but was still doing the others, his meltdowns returned. I was fascinated by that and QUICKLY resumed doing it!


5. Auditory Level 3--We make 3 different sounds for one minute, 10 sessions a day. He is blindfolded and has to point to where he hears the sound. When Donna did this, he didn't locate the sounds very well. The goal is to create the ability to consistently and instantly hear, recognize and locate sounds in the environment. To be able to FILTER sounds, including not being over-sensitive or easily distracted by sound. This hopefully will help him when we go to those crazy birthday parties or Primary activities. Hopefully instead of being overwhelmed by the activity and noise, he'll be able to filter and join in and have fun too. We've really just started this one so i can't testify to it's success just yet.


6. We also do a reading program with him based on Glenn Doman's How to Teach Your Baby to Read. I have a bazillion (truly) flashcards i've made with word groups and we just go through them--i show him the card and say the word and we're very quickly done. It's just to show him words. It's probably the opposite of phonics. I don't have an opinion on either method. I just like this program. It's fun to make word groups (things that fly, words for eating, farm animals, action words; etc.) and see that he's recognizing words in print.

I forgot to mention that we reward him for his creeping and crawling. Since this is the one program he has to actively participate in and it's hard work. For every "cycle" he does (right now one cycle is 1 low crawl and 10 creeping loops) he is awarded tokens. They are laminated Thomas the Tank Engine characters. One says "Fast Work" another says "I Did it Myself" "Good Attitude" etc. He can earn about 30 tokens in one day. Then he can turn them in for computer time or to watch TV. He can hoard them to earn a big treat like going to Itz. He can also lose them for bad behavior. When we were having such a hard time with him being so mouthy after our trip to Utah, we started to take tokens away for sassiness. We took 10 tokens each time he pooped his pants. Ten gone for getting out of bed after he's been tucked in for the night. He really works hard for them and he really values them. It's been a fantastic little system.

We've had major ups-and-downs since we've started the programs. But what i know is that when we're consistently accomplishing these programs, he's doing great. He transitions really well. He may mildly complain, but it's appropriate. I described how well he did socially in Aspen Grove. He works through frustration rather than losing it at the first sign of it. He's not sassy very often. He's not as easily angered. He doesn't freak out over textures. He can deal with being told "No." He's, for the most part, happy and fun and a treat. I hope he soon "owns" all of these skills and that at some point we can start weaning from the programs and see about putting some gluten back in his system (if he has to stay gluten-free, it's no big deal. We're good at it now). Donna says he's doing remarkably well, which is gratifying feedback for me. It's been a lot of work for all of us, but oh so worth it!