December 14th, 2005 at 12:08 am
Final Update: December 23rd, 11:26pm.
This post was a live-blog of the sensory integration (link dead) therapy one of my daughters underwent in December. The sessions happened at the Therapy Learning Center in Lebanon, OH. For multiple reasons my girl will be referred to just as “S”.
Whatever results we get may be from the therapy, from things we have previously done, or both. Conclusions I’ll save for later.
This therapy, also used in some autism cases, consists of challenging three senses: motion, hearing, and sight. A goal is to stimulate these without overloading the patient, in a way like lifting weights without “maxxing out”.
Motion therapy involves lying on a special padded table with a pillow. The table moves in two ways, “side-to-side” or “head-to-toe”:
When the table is “side-to-side”, the patient moves in a circle in the y-z plane (diagram 1). Think of lying on your back with a hula hoop around your waist pointing straight up. If the red dot is your back belt loop, it would move along the path of the hula hoop on this table. It’s like a normal food rotisserie.
When the table is “head-to-toe”, the patient moves along the x-y plane (diagram 2). Think of being on a Ferris wheel, with a bed instead of a swinging chair. In either setting, the table completes one cycle every six seconds.
The motion therapy is held in a room, completely dark except for a diffuse light which challenges sight. The light is suspended about 3 feet above the table. Headphones play music, variously filtered so that it intentionally sounds strange and makes the mind pay more attention.
Day 0 - Thoughts the Night Before
Therapy starts tomorrow for S. We’ve been to a meeting at the clinic before, so we know what to expect with the equipment used and some of the procedures. S wasn’t thrilled with the first meeting, and cried during half of the first “session”. We’ve been told to expect worse before it gets better; it’s been described as a mental reprogramming of sorts.
The treatments make sense, as much as what can make sense for child development and psychology. The process was brought from a child’s occupational therapy clinic in Denver, and apparently it’s still new enough that it’s not in the standard OT’s set of tools. Insurance may not cover all or even some of it. The cost is somewhat disconcerting because we can’t say we want our old kid back if something is wrong. She has made some progress since her diagnosis a year ago.
Tomorrow we get to feel out what the routine is going to be. There are two 30-minute sessions 3 hours apart every day for 12 days. Lunch will kill an hour of that, but it will be interesting to see if she doesn’t try to take her nap before the 2nd session. If she does she can be quite the grumpy girl during the afternoon session.
Day 1
Session 1
Room was set dark with magenta light. Table was set side-to-side. S cried and fought at first, requiring hand-held restraint by therapist, assistant, and both parents. She finally relaxed after about 15 minutes. Had to keep holding her on the table but lightly to reassure her we were still there. She got annoyed again when made to wear headphones. Therapist says it’s an excellent start. S came out sweaty but upbeat.
Session 2
This time S only whimpered for half a minute and relaxed, no restraints necessary. She actually fell asleep on the table Therapist says it’s not as good as awake watching the lights, but there is still some benefit. Going to try getting there earlier to beat the afternoon nap.
Night
She took 2½ hours of rocking on Saturday to sleep and usually takes about 1½ hours: last night, 20 minutes. During bath time, said “Peek-a-boo” for the first time.
Day 2
Session 1
Dark room, magenta light, head-to-toe
Whimpered at the start but settled down. Stayed awake but for the last 10 minutes. Therapist said the session was originally designed to get 20 minutes of therapy anyway. Good mood coming out.
Session 2
Gave S ice cream to keep her from napping thru therapy, and she stayed awake most of the afternoon, falling asleep just before we got home. She relaxed on the bed in the dark room and played with a glow-in-the-dark plastic butterfly and star. Left in a good mood, relieved to be out.
Night
Took 45 minutes to go to sleep. S woke up about 2 and stayed awake for an hour. In the past when she has awakened it usually takes about 2 hours for her to settle back down.
Day 3
Session 1
Therapy was side-to-side. S uncertain at start. She held her sippy cup the whole time. Light started “ruby”, a redder version of magenta, and shifted to red. Almost fell asleep in the middle, but we kept her awake. Liked playing with butterflies but not with glow-in-the-dark Slinky. Cried toward the end of the red time but didn’t fight. Therapist said S did well.
Session 2
No whimpering at the start. The light started with ruby, then red, then ruby, then back to magenta for the last 10 minutes. Magenta is supposed to calm; S was knocked out and woke up an hour north of Cincinnati. Instead of crying, she started singing during the red phase.
Night
S rocked to sleep in 15 minutes. Nice. She slept all through the night.
Day 4
Session 1
Table was set head-to-toe, with same lights as yesterday. S played with more toys. She came close to nodding off at the end, but treats to tickle her kept her awake. She was very chatty coming out of therapy.
Between sessions
After lunch we came back early and played in the Large Motor Skills room. She liked the sandbox-table until she got some sand in her mouth. It annoyed her, but she didn’t have a meltdown.
Session 2
S chatted most of the 15 minutes of ruby. She continued to be happy during some magenta but was annoyed for a couple of minutes. Maybe it was the music? 
Near the end she played with the Slinky like it was an accordion. The therapist was impressed and recommended the Large Motor room and increased headset volume for tomorrow. She left in good spirits, not falling asleep until we got home.
Night
S rocked to sleep in 30 minutes. She woke up around 2:30am. I repeatedly rocked her back down, only to have her wake up in bed. She finally stayed down around quarter after four.
Day 5
Session 1
Table was set side-to-side, 5 minutes of ruby, 25 of red light.
S stayed awake the whole session, chatty in the middle. Therapist said S has a lot of syllables and thought she was singing “Twinkle Twinkle Little Star” at one point. She played with butterflies, slinky, and expanding sphere.
Large Motor Room
She jumped on the personal trampoline, but her favorite activity was a spinning swing common in most occupational therapy play areas.
Progress Note
While looking at a kids’ book on cars, S pointed at cars and said, “beep-beep” without prompting. She then sang part of a Sesame Street song with “beep-beep” in it. This is significant for a child that usually just mimics sounds.
Session 2
15 minutes of red, 15 of magenta.
S talked during most of the red time, but she went to sleep with magenta. She woke up on the way home again.
Night
S fell asleep with 5 minutes of rocking. She woke up at 6am but rocked backed to sleep easily.
Day 6
My wife stayed in the room with S while her sister and I hung out in the Large Motor room.
Progress Note
On the way to Cincinnati, the kids were watching Blue’s Clues on the DVD player when S piped up and said, “giddy-up”. My wife asked where that came from, and I asked if there was a horse on the video, which there was. So she sees a horse and says “giddy-up”. There are some connections happening there.
Session 1
The light started out with ruby, then ended with about 10 minutes of green. Red made up the balance. S likes to stare at red, whereas it agitates other kids. When green came on, S “appeared to say, ‘Hi’” to it. Green is supposed to amplify emotions in general. Toward the end, S fought to take off her headphones, an indication to the therapist that they are too loud. S can’t just say, “too loud” yet.
Progress Note
At lunch when I offered S another pancake she pushed off and said something that could be taken for “no pancake”. We’ll see if this repeats.
Session 2
The light pattern went red for the first half and green for the latter. S watched the red but was too tired to stay up for green. She woke up when I put her in the van, and that was the extent of her nap, 10 minutes.
Night
S went to sleep after 10 minutes and slept all night long.
Day 7
Session 1
Table was set side-to-side; light was red the first half, green the second. S stayed awake during all of the red. We had to play with her to get to stay awake during the first half of the green, but she fell asleep anyway.
Session 2
Light pattern was 10 minutes red, 10 green, and 10 blue. S was happy and talkative during the red. During the green she started singing, and when a glow-in-the-dark star was held up, she said “twinkle twinkle star”. S was playful during the blue, even pinky-wrestling with me at one point.
Night
S was restful at 15 minutes but wouldn’t let me take her nighttime drink right away. She slept all night.
Day 8
Session 1
Table was set head to toe. Light pattern was 5 ruby, 10 red, 10 green, 5 blue. S was quiet during the first 15 minutes but talked loudly during the latter half. She said a couple things from Dora and Blue’s Clues, in addition to repeated “ginky” (her name for binkie), “no” (but seemingly not in reaction to anything), “giddy-up” (I asked if there were horses in the headphones, but no) and “cookie”. When we left, I held a cookie in my hand and asked, “what is this?” She answered Cookie. I tried the same with Goldfish but got a push away.
Lunch
S correctly identified “pancake” without suggestion. I asked about bacon but the word wasn’t clear. She had a Pop-on Cinderella with horse. I asked about the rider, and she slurred “Cinderella”. I pointed to the horse and asked, “What is this?” and she said, “Horse.”
After-lunch Chat
Before the second session, five occupational and physical therapists came from northern Kentucky to check out the program. They asked what I thought about the program and what results I was seeing. I told them about the easier nights and that things were improving but inconsistently so. This took place in the Large Motor room. S clung to me for the better part of the interview, but started to run around. Finally she came to her favorite swing, and one of the OTs started playing with her and the swing. S’s acceptance of that surprised me.
Session 2
The chat lasted past 1pm, so S didn’t have a chance. She fell asleep 5 minutes into the session and didn’t awake until the east side of Columbus.
Night
S went down in 30 minutes. At 1:30am she woke up and needed to be rocked for an hour.
Day 9
 |
Frigid morning
The van’s thermometer hit zero Monday morning. |
Session 1
Table set side-to-side; the light pattern was 2 ruby, 5 red, 5 green, 10 blue, and the balance violet. Purple is purported to stimulate higher brain functions, so perhaps it’s funny that I found it hard to look at. She handled it fine, chatting during the whole program. During the red she started singing “Sing a Song” from Sesame Street. Late into the blue she refused to play with any toys and instead moved her legs like making a snow angel and waving her arms in the air.
After Lunch
After lunch at McDonald’s, I took S into the Play Place area so she could run around. Last week she ran around the appartus but didn’t go in. Today, she not only entered, but climbed up four levels. With all the kids around I half-expected a meltdown, but she only cried when I had a smaller adult go fetch her.
Session 2
The light pattern was 15 minutes of violet and 15 minutes of magenta. She babbled happily during the first 10 minutes and then was out for the rest of the term. I tried to keep her asleep while moving to the car, but the cold air woke her up.
Night
Nana reported that S went to sleep in 3 minutes of rocking. S slept all night.
Day 10
Session 1
Table set head-to-toe. Light pattern was 2 ruby, 5 red, 3 green, 5 blue-green, 15 violet. S chattered happily during the first half but started laughing during the violet and kicked toys away. After the session she saw numbers on the wall and started reciting her numbers. She has always been interested in labels and the written word, but maybe now she differentiates between letters and numbers? Therapist said S might be hyperlexic.
Session 2
Light pattern was 15 minutes of violet, 15 of magenta. S was calm the first 5 minutes or so, then started babbling again. Near the end of the violet stage she was showing signs of being overwhelmed—when she swings between laughing and crying/screaming. She then slept through the magenta stage and all the way home.
Night
S went to sleep in 30 minutes and slept all night.
Day 11
Session 1
Table set side-to-side; light pattern was 20 min. violet and 10 min. magenta. S chatted the whole time with the collapsing globe and slinky.
After Lunch
We played in the Large Motor room. She walked to the swing. I simply asked “What is it?” and she said “swing”.
Session 2
Pattern was 10 min. violet and 20 min. magenta. S relaxed during the violet and slept through the magenta. She woke up when I put her in the van.
Night
S was rubbing her eyes even before taking her bath. She went down in less than 5 minutes. She woke up once when her sister cried out, but S went back to sleep in 10 minutes and slept the rest of the night.
Day 12
On the Way
S started grunting when she wanted a snack. Five times I asked her, “What do you want?” Three times she said “Cracker,” which merited some veggie crackers, of course.
Session 1
Table set head-to-toe. Light pattern was 3 ruby, 3 red, 3 green, 3 blue-green, and finished with violet. S played with the sphere and slinky early on but stopped when violet came on. She then started talking, saying “crazy” a couple of times and singing Elmo’s “Wild Wild West” song.
Session 2
Light pattern was the same as Session 1, but finished up with 10 minutes of magenta. The blue-green seemed to make her particularly angry, but the violet came on just in time and she calmed down. The magenta knocked her out, of course, and she woke up a mile from home.
Night
Despite staying up late, S maintained control for the most part. She fell asleep in 10 minutes.
The Next 18 Days
We now have a small light box to be used for the next 18 days. S is to watch the box in a completely dark room 20 minutes a day right after she gets up and right before she goes to bed. We may have to start going to bed earlier for her to get 20 minutes in the evening.
This ends the live blog. As cool noteworthy stuff comes up I’ll throw it on another post.
Show On Map
December 14th, 2005 at 7:20 am
Wow. Very cool! One side effect my daughter had after her first therapy was vomiting. It only happened the first time, but I knew it was a not-uncommon side effect of SI therapy. The thing I loved about watching my daughter’s therapy sessions was that there were things for me to learn, things I could do at home, etc. I love OT’s - they are some of the most interesting and talented people. God’s blessings to you all.
December 17th, 2005 at 1:45 pm
When unusual or non-standard diagnosis or treatments are mentioned I always check out Dr. Stephen Barrett’s Quackwatch (http://www.quackwatch.org/). Sure enough, there’s an article at the site, “Why ‘Sensory Integration Disorder’ Is a Dubious Diagnosis”, by Peter L. Heilbroner, MD, PhD (http://www.quackwatch.org/01QuackeryRelatedTopics/sid.html). It, of course, lists numerous references.
And a google check on the internet reveals more, such as:
A May, 2004, Clinical Policy Bulletin from Aetna (link dead) states, in part, with numerous references:
“An assessment conducted by the National Academy of Sciences (NAS) (2001) concluded that there is insufficient evidence of the effectiveness of sensory integration therapy for autism. The NAS report states that “[t]here is a paucity of research concerning sensory integration treatments in autism…. These interventions have also not yet been supported by empirical studies.” In addition, the AAP (2001) stated that research data supporting the effectiveness of sensory integration therapy in managing autistic children is scant.”
The National Association of School Psychologists (link dead) issued a communique, “A School Psychologist Investigates Sensory Integration Therapies: Promise, Possibility, and the Art of Placebo”, by Dr. Steven R. Shaw, lead school psychologist at The Children’s Hospital, Greenville, SC, and Associate Professor of Pediatrics, Medical University of South Carolina in which he states, with references provided:
“There is no evidence that SI therapy is or has ever been an effective treatment for children with learning disabilities, autism, or any other developmental disability. This is not one of those common cases where there is not enough information upon which to effectively evaluate the treatment. In fact, there are plenty of quality outcome studies (41 as of this writing). There is no study that uses a quality research design (e.g., random assignment of subjects, matched control groups, consideration of the effects of maturation, evaluators blind to treatment condition) that finds SI therapy to be effective in reducing any problem behaviors or increasing any desired behaviors. There is plenty of evidence from which a verdict can be drawn. And the verdict is that, despite the intuitive appeal and glowing testimonials, SI therapy is not an effective treatment (Gresham, Beebe-Frankenburger, & MacMillan, 1999; Hoehn & Baumeister, 1994; Shaw, Powers, Abelkop, & Mullis, 2002).”
The Association for Science in Autism Treatment has an article on their website, VIEWPOINT: Sensory Integration Therapy in Autism” (link dead) by A. Mervyn Fox, MB, BS, FRCPC, FRCPCH, DCH, who is the Medical Director of a large regional children’s rehabilitation center in London, Ontario and an Associate Professor of Pediatrics, Psychiatry and Occupational Therapy at the University of Western Ontario, reported, with references:
“A recent authoritative review that cited over 105 studies raised serious doubts about the validity of SI therapy as a treatment for learning disabled children (Hoehn & Baumeister, 1994), and by extension for any other groups diagnosed as having sensory integrative dysfunction. It concluded that current research may in fact be sufficient to declare SI therapy not merely unproven, but a demonstrably ineffective primary or adjunctive remedial treatment for learning disabilities and other disorders .
“Despite this overwhelmingly contrary scientific evidence, SI advocates continue uncritically to promote the therapy they provide. A recent popular promotional work which is often recommended to parents of mildly autistic children makes no reference to any of the scientific critiques (Kranowitz, 1998).
“It is not up to the scientific community to disprove SI theory. Rather, it is up to SI devotees to produce convincing evidence—if not for their beliefs, at least for the efficacy of their interventions.”
These and other other articles and references on SI should be given serious consideration and discussion with qualified medical professionals before pursuing such treatment. Prof. Fox advised:
“It is not the scientist-clinician’s role to diminish or extinguish hope. Best clinical practice in autism combines realism with optimism. When resources are limited (and when are they not?) it is ethical to provide evidence-based interventions in preference of those dependent only upon belief. Sensory integration therapy is not always pleasant for the children, and it may easily take time away from proven interventions, which attack the core symptoms of autism rather than the non-specific halo of dysfunction generated by the autistic brain. Lost hopes, lost investments and lost faith in professionals are not insignificant side effects.”
December 18th, 2005 at 6:53 am
Thank you both for your comments.
Carl, thank you for the links. I’ll check them out as I get time. The jury is still out with me, because I don’t like things I can’t explain either. I don’t think I am altering objectivity in a need to find “evidence” to advocate that this is working. Other than the shortened sleep times nothing is consistent yet, and maybe that’s because of the altered nap schedule that this is forcing on us. Skepticism is healthy. If there are behavioral changes, I’ll continue to log them here for the next six days whether or not I can explain the cause.
December 19th, 2005 at 9:31 am
Dan is such a diplomat. You can site all of the scientific evidence you want; however, as the mother of the child with this diagnosis, I KNOW this diagnosis exists because I see it in every ounce of her being. S is a twin. We have a “controlled” nature vs. nurture experiment and these two children have a completely different response to every situation. This cannot just be discounted to “personality” differences. You can watch these children and see that there is so much more than that.
December 21st, 2005 at 9:36 am
Carl,
I am a licensed Early Childhood Sp. Ed. specialist (at the graduate level). Sensory integration disorder treatment can be misused (by well-meaning people) for disorders that it doesn’t directly benefit, and I think that is where you will find the controversy. Your references all refer to that - when used as a treatment or cure for other things besides sensory integration problems. Sensory Integration disorder is its own diagnosis. The field of Occupational Therapy recognizes it and I have personally seen this field of therapy work with several children with the SI disorder (with or without other concurrent disorders). I have seen major insurance companies pay for this therapy as prescribed by doctors, but never as a prescribed treatment for another disorder. Where have you ever heard Dan say that his daughter has a concurrent diagnosis? Be careful in finding refuting evidence for anything on the internet.
December 21st, 2005 at 10:51 am
TKls2myhrt,
Because Dan brought up SI therapy, but did not state specifically the nature of his daughter’s disorder, the references and quotes I posted were general in nature and included those on the SI disorder, as well as professional views on the effectiveness of SI therapy on a variety of disorders and dysfunctions. The links I provided included numerous additional references, especially to referred journal articles.
The main problem noted was the lack of qualified evidence for efficacy of SI therapy, whether by well-meaning people or not. As I noted then, “These and other other articles and references on SI should be given serious consideration and discussion with qualified medical professionals before pursuing such treatment.”
I am well aware that much erroneous writings are on the internet (such as pronouncements on what constitutes a double-blind “controlled experiment”).
December 21st, 2005 at 3:34 pm
Thank you both again.
For clarification, S has a Sensory Integration Disorder diagnosis with nothing concurrent at this time. I apologize for any confusion this may have caused. My wife found the learning center via the web, but we had discussed it with the OT that regularly works with our daughter. It will be interesting to see what S’s OT says on her first visit back.
May 30th, 2006 at 11:10 am
[...] in his quae didicisti et credita « Pope Criticizes Church Political Radio in Warsaw A Diagnosis of Autism May 30th, 2006 at 11:06 am Last December I posted a 12-day long live blog about my youngerdaughter’s sensory integration therapy. Some of you have asked for an update, and I thank you for your concern. [...]