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Permanent Changes from iLs?

October 9, 2013

Katie asked for an update in iLs: Are we still using it? Have we seen any long-term changes?

I’ll throw in a freebie: Tried the iLs pillow?

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Joy doing iLs therapy with her PCA, summer 2013

Three years ago we purchased the professional grade iLs –Integrated Listening Systems –package to use at home. I was home-schooling at that time and anticipated using it with three children, whose diagnoses include FAS/ADHD, cerebral palsy (spastic quadriplegia with mixed tone), anxiety, and auditory processing/speech quirks.

The alternative to buying it for use at home, was to use iLs in a clinic as part of an occupational or speech therapy treatment plan, which we did as a trial. However at clinic-appointment speed (once per week), it seemed like progress would be slow. So with three kids who might benefit, we purchased a set to use at home.

Because the premise of iLs sounds like smoke-and-mirrors (wear bone-conducting headphones and listen to our specially-treated classical music while exercising and change your brain!) I tried it out first myself, with loan of equipment from our clinic. I cannot tell you if listening for two sessions changed my brain. But it definitely effected my brain. When I took the set off after a 1-hr. listening session (in which I cleaned my house as ‘exercise,’) my mind felt as tired as if I’d just taken the SAT.

I was sold because the number one challenge  at the time was an ADHD hyper-active brain. We had tried and had liked the effects of medication, but could not tolerate the medication side effects so the ADHD was running amok, untreated, in our family. For that child, a 1-hour session of iLs done first thing in the AM, quieted her mind as much as medication did and the effects lasted until about 4:00 PM. That was a surprise to me as I thought we were doing iLs with her to effect long-term changes in her brain; I wasn’t expecting immediate pay-off. I have no idea if it has that effect on other children, or just her. But it was nice.

Did it make long-term changes? That is harder to say because kids grown and change all the time and I cannot see how anyone could separate out all the other variables in her case. But I can observe that we’ve made it three years without medication, after one year of iLs. Now we are considering medication again. Could we do iLs again instead? Yes, and I’d guess we’d see positive results. But now that she attends school outside our home all day, getting in an hour of iLs before she leaves in the morning is not feasible.

>iLs Week 1 in Review

Hope doing iLs (game not included) summer 2010

That year, I did two iLs sessions per day, one for each of two children, back to back. And I REALLY wish we could have afforded two systems so they could have done it together. Physical exercise is a component of iLs treatment and I “did” much of each session with each one to keep her  on track with exercise/play –something they would have had fun doing with each other if they could have been listening at the same time.

However, there was an unexpected benefit to my involvement: strengthening attachment. I am not gifted at being a “fun,” playful mom. But that hour of iLs daily, five days a week freed me of responsibility from doing much besides being in-the-moment with that child for that hour. And it was structured, predictable, fun-with-mom time, for them. Even though they are listening, they can talk and it stands out in my mind as priceless time we had to connect one-on-one. The attachment benefits have clearly lasted.

I did not see as dramatic a benefit for the child with anxious tendencies and auditory/speech processing quirks. Her anxiety dropped, but whether that was due to iLs or to attachment-building, I can’t say. And the speech-specific module in iLs is the level above where we were when, she, too, went out to school. (Kids generally start with the first module, which is sensory/motor integration, and move up.) I think if she was my only child who was a candidate for iLs treatment, we would have still done it, but in a clinic setting. I may have felt differently about that if her auditory processing issues were more severe.

Joy could not use iLs back then. At three she was technically old enough. But with her multiple disabilities, she could not tolerate wearing the headphones. Which is something to consider: not only does the child need to accept (not fight) wearing bone conducting headphones, they need the neck and shoulder strength to be able to support their head with the added weight. The headphones are not any heavier than average, but with low tone, it is enough extra weight to be a factor.  Joy LOVES the unusual feature of the headphones, bone-conducted sound, because she’s a sensory-seeker. But she did not like the feel of the headphones over her ears, or the way they slid when she moved her head (even wearing the headband iLs provides that goes over the headphones to stabilize them).

In the clinic, where there was a set of extra hands (the therapist’s) to try to distract her from taking off the headphones, and to help put them back on when she did, we did iLs once a week for several months before Joy simply refused to co-operate. After a break of several months, last summer, Joy began accepting the headphones again, and her PCA did iLs with her at home almost every weekday for six weeks until summer ended.

We are not using iLs with Joy at the moment because we are on a break from clinic-based OT and because she’s in school all day and I don’t have an hour on one-on-one time to give her daily at home. (And, right now, none of our PCAs are working.) However, at our next IEP meeting, I am going to raise the possibility on incorporating iLs into Joy’s school day during her free “choice time” slot in her afternoon.

The effects of iLs on Joy have been the most dramatic, and unlike Hope, there are not as many environmental variables that might confuse the question.

Joy has always developed on her own, slow, but predictable curve. We can count on incremental progress, but not sudden change. Because of the starts and stops in treatment, Joy still has not completed the first (sensory/motor) level of iLs. And every time we restart, we go backward several sessions and repeat them before progressing on. So she’s repeated sections of the first level in a way that is not typical. But it has had a very positive effect on her oral integration.  She has made rapid gains in her ability to tolerate food textures, and in coordinated eating movements inside her mouth, which has significantly widened the repertoire of foods she can chew and swallow. And the intelligibility of her speech has improved significantly, although we still have a long way to go.

And this progress is despite the fact that Joy cannot possibly follow the iLs “playbook” for structured physical activity while listening. So we settle for any activity that has her crossing mid-line, like turning pages in a book  or picking up objects on one side and dropping them in a bucket on the other side.

So I’m motivated to somehow work iLs into Joy’s day, even if it might be at school.

At the same time, we keep encountering an unexpected side effect off and on: iLs seems to be such a work-out for Joy’s brain, that despite having the bone conduction turned down and shortening the listening sessions, it makes her very sleepy. Sometimes she nods off into a nap mid-session (she not a napper) and even when she doesn’t fall asleep, the iLs session have a similar effect on her night-time sleep that a nap does: she wakes up in the middle of the night and talks and sings for an hour or two before falling back asleep. That means she doesn’t get enough sleep at night and because she’s in public school, I can’t let her sleep in. I’m hoping this sleep thing is a phase she will grow out of because I want to keep using iLs with her.

Enter the invention and release of the iLs Pillow, which, if you investigate it, is marketed only as a sleep-aid, not as an alternate delivery system for iLs therapy. Even so, I was hopeful as Joy, who used to be a champion sleeper, is going through a phase  where she does not predictably sleep well at night. And I knew she loved bone-conducted sound and classical music. (The pillow delivers relaxing classical music through bone-conduction, not the ears.)

But the pillow, for Joy, was a bust. It was so novel that she stayed awake listening and finally pushed the pillow away to fall asleep. Any new sleep-association object takes time to develop that association and if we owned the pillow and I was determined that Joy would learn to sleep with it, I’m sure she would have learned to like it. And if the pillow delivered the same therapeutic benefit as the headphone system, it would be well-worth the learning-to-like-it curve. But it makes no claim to.

And as far as sleep-association options go, it seems high maintenance. The pillow is cordless but you have to remember to recharge the iPod inside. And there is no easy on-off mechanism that allows the parent to turn the pillow back on in the dark, in the middle of the night –without turning on the light, putting on glasses, opening up the pillow and turning the iPod back on. Way too much work compared to flipping the “on” switch for the ceiling fan.

None of the other girls is sleep-challenged right now so I didn’t try it out on anyone else.

So, that’s where we’re at with iLs. It does not replace other listening systems on the market like the interactive metronome. I specifically asked Joy’s therapist about that because it is now common to see kids wearing iLs at our clinic. She said they still have older listening systems in their clinic repertoire because each one does something different and some kids benefit from one of the other forms of listening therapy. My guess is that only a sit-down appointment with a therapist who knows your child could determine which one to try first. However, I can’t help but notice the increasing number of kids using iLs and guess that maybe, like we have, families are finding iLs is beneficial across varied diagnoses.

For the record: I have no connection with iLs. This is simply our family’s experience.

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5 Comments leave one →
  1. October 9, 2013 5:32 pm

    Happy to hear your experiences with the iLS, we are hopefully starting our programme soon. I have been a bit worried about how my daughter will accept the headphones as well, but we can only try! Thank you for sharing.

  2. mikeandkatie1 permalink
    October 10, 2013 11:58 pm

    Thanks! It will be interesting to see how it works out for our family. We have four girls. Our 6 yr old has some sensory issues, some attention and anxiety stuff. She loves the iLs and the activities. She asks for more turns after her hour. Our 4 yr old has suspected fetal alcohol issues and does not like doing the activities while listening but will color or sit for about 15 min. Our 3 yr old has sleep troubles and ADD behavior and some balance and coordination stuff. She doesn’t like the headphones at all. As well as our 20 month old. Which is fine because we weren’t really worried about her. I’m glad the other girls decided they don’t really like the headphone because things were pretty chaotic that first day when everyone wanted their turn. All the girls will do the activities while Amanda is listening so that’s fun for everyone. I’m not a super fun mom either so I need the play book too. 🙂

  3. barbershoppe permalink
    November 10, 2013 11:38 pm

    Do you have any idea how many sessions it took to observe positive changes? We are considering this for a teenager. (for ADD) Thank you for writing such a detailed post on this.

    • November 11, 2013 1:39 pm

      It has been a few years now, but I recall the short-term effects –the hours-long calming effect iLs had on her behavior –were apparent within a few weeks. I had not initially assigned iLs the first slot in our after-breakfast day, but rearranged our schedule to do iLs earlier in the day so the effect lingered over the part of the day that was most important to me. As I said, I don’t know if that benefit is to be expected or not. But it would be worth finding someone who could loan you a set for a week or two to find out. Or maybe you could trial it at a clinic. Or perhaps iLs (the company) offers a trial period? It is worth looking into!

      • barbershoppe permalink
        November 12, 2013 8:52 pm

        Thank you, Carrie. I will let you know what we learn.

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