The Listening Program

TLP’s clinically-proven approach gently trains the auditory system to accurately process sound. When auditory perception is distorted—whether through illness, injury, developmental or other challenges—auditory processing problems can lead to academic, emotional, cognitive and social challenges, including problems with the following: • Attention and concentration • Listening • Speech and language • Memory • Communication • Social skills • Reading • Sensory integration • Self regulation • Physical balance and coordination • Vocal performance and musical ability Whether you are interested in improving brain health for longevity, expanding your own abilities or helping someone you care about, TLP can make a significant difference. With the guidance of a TLP Provider, The Listening Program is an easy-to-use, cost effective, portable method that can bring about lasting change.

Lions and Tigers and Therapy, Oh My! (Part 2)

About 3 weeks ago, we started some music/brain therapy with Olivia.  I'd been asking for this for some time after reading about successes with it.  My OT did tons of research on the hows and whys of all the different types of brain and music therapy out there before deciding on one from Advanced Brain Technologies.  More information can be found here at The Listening Program. Two pages that explain a bit about how it works are here and here.  Francis (*my OT) is extremely thorough and spoke with many therapists using different styles and companies to find out what worked and what didn't.  I was also very comfortable with this one; especially once I found out how many research studies they are involved in and knowing that the military uses this program for PTSD and Wounded Warriors.  On the ABT website you can find a link to info about all the studies, past and present.

(*side note - I have no kickbacks from anything I'm going to say in regard to therapies.  I am posting the links for the PWS parents who will come here for this information so it will save time answering questions later on)


I have a set of headphones and CD's and the OT also has a set of headphones, but her music is on an Ipod.  Her headphones are also bone conduction, where mine are ones recommended by the company but without the bone conduction aspect (it was too expensive).  While the therapy itself is part of the OT session, the equipment we use at home was an out of pocket expense for us.

Frances does OT with her twice a week and uses the headphones during the session; and I use them with her every day, twice a day.

The first day we just tried to get Livi used to the headphones.  She really fought them at first, but we tried repeatedly until she became more comfortable with them on.  Once the music was on, she was entranced.  When Frances took the earphones off of her, she gave me one of her very rare, super sad faces where her mouth turns down into a perfect upside down U - an expression that I think is uniquely Prader Willi.

That evening, I happened to notice her run through the kitchen.  It took me a few seconds to realize that for a few brief seconds, she looked like a normal two year old.  She ran without the lopsided loping gait that she has momentarily before lapsing back into her normal run.  I really thought that it was just a coincidence at the time.

The next morning I saw her try to put the earphones on her own ears.  I just stood watching her for a moment try to figure out how to do it and then helped her.  She was so close to being able to coordinate it that it really surprised me. I played the music for her to listen to while I was getting the girls ready for school and making breakfast.  When it came time to take them off, she got extremely upset.  She began crying without moving or making a sound; only standing there with that upside down U and super sad face all screwed up in misery, shoulders slumped.  She ran off after that and as I put them away, I noticed she was hiding behind a huge quilt we have hanging in the hallway.  I thought she was playing at first, but when I went to pull back the quilt I saw her crying silently to herself.  It was such strange behavior for her - she's always so sunny and cheerful, especially in the mornings.

Lesson to self:   Turn the music down slowly, let the earphones sit for a minute and then remove while distracting.  The sudden change was too abrupt for her. 

It's kind of hard to describe, but as this continued over the last three weeks, I kept seeing more and more sparks and flashes of behavior that I just couldn't put down to coincidence anymore.  She is absolutely enamored with the music.  She is responding more quickly to commands; I've seen her run way more than I ever have and with more coordination; she's more involved in conversation (even though we can't understand her) and somehow she just seems to have more cognition in general.  This doesn't mean she's acting like a normal 2 year old by any means, but for her the improvements are a big deal.  They are subtle changes in some ways... the best I can describe it is that it seems like her processing power just sped up a few degrees.

So yesterday we added another wrinkle to this - I gave her a liquid supplement called Pearl's Daily B for the first time.  I personally favor this supplement as the man who sells it has it manufactured for his beautiful daughter and her unique needs.

OH.  MY.  GOODNESS.

She was on fire all day.  At the PT session (2 pm)  she was racing around with so much energy that it was commented on.   She was zooming up and down stairs, chatting and singing away, riding bikes and just generally being rambunctious.  At school they commented on how engaged she was all day.  And at home she was like the energizer bunny.  She even ran through the house several times - running flat out, using all four limbs in proper position.  I don't know if it was the B, or the therapy or both.. but it was just such an obvious change that people outside our family commented on it.

We had a weekly bible study at our house last night.  One of the men who has only been here about 3 times commented on how alive Olivia seemed and how he had never heard her talk so much before.  She was just babbling away, running up to him and hugging him and running around having fun.

At the end of the study, we were all saying our goodbyes when out of the blue we heard a very clear "BYE".   So clear and loud, in fact, that one of the women who came to the study thought it was her son saying it.  We all looked kind of astonished and looked at Livi who realized that this was a cool thing, so she kept saying it over and over again.  Typically when she speaks, her words are very slurred and she sort of whispers them or mouths them without sound.  She has said "bye" before, but it has always sounded something like a tired old Southern lady saying "bahh" with her voice dropping off at the end.  She has almost always dropped the last sounds of any word she's attempted and most of the time she literally sounds like she has marbles in her mouth while at the same time speaking gobbledygook. This time it was a loud and clear "BYE" with an emphasis on the YE.


I don't know if it's the ABT therapy, the B vitamins, or both. I've tried hard to keep a level head about the things I've seen.  At first I thought they were coincidences since I felt that surely it couldn't work that quickly, even though what I was seeing was subtle. But all these coincidences are adding up for me.   I feel like we are seeing real results - It was so notable that in the follow up email with prayer requests sent after the meeting, our fearless facilitator wrote this:  "Praise that Olivia has been responding positively to some new treatment approaches. She has shown an improvement in her development. Monday night she very clearly said bye to Janis and this has never happened before where she spoke so clearly. What a joy to see a miracle happen right before our very eyes! "

Argh.

I'm so glad this week is almost over.  All I've been doing at home is survival mode - fix breakfast, lunch and dinner for everyone and put them to bed.  Lots of phone calls and I've felt like I've been in paperwork hell with all the forms I've had to (and still have to) fill out for Olivia and family.

Things were busy and going well, but I came up against a bit of a roadblock today.  We need to see a Pediatric Dietitian, preferably one who specializes in obesity.  The closest one to us that fits that bill and who has some knowledge of Prader Willi Syndrome lives in Atlanta.  (Bailey Koch with Atlanta Pediatric Nutrition if anyone is interested)  Unfortunately Tricare won't cover any dietetic services unless they are given at a MTF (Military Treatment Facility).  I talked with our Tricare representative and found out that it would literally take an act of Congress in order to get those services paid for.  Joe Wilson, expect to be hearing from me soon!

In the meantime, we tried to find a way around that by going to the dietitian at the Naval Hospital and asking her to refer us to Bailey, hoping that once it was acknowledged that she couldn't help us it would get paid for. She agreed literally within the first 3 minutes that it would be best for us to go there and spent the better part of an hour trying to figure out a way for it to happen.  It still came down to this...NO.   The only option we had was finding a MTF anywhere in the US with the expertise to deal with that and then go there to get services.  Travel not included.  She is currently looking into it, but I doubt she will find anyone.

After coming to that conclusion, she gave me materials she gathered from the web about low calorie low carb diets and told me that literally the only thing she could find was that calories needed to be restricted between 33% and 70%.  She said it was such a huge range, divided the difference and said we should restrict her calories 50%.  I know she meant well, but it was probably one of the things that bothered me the most about the visit.  She was giving me her best GUESS.  On a major issue.  I could have done that myself.  It's not her fault at all, but I was bothered by that being my only option - again not her fault.  Cut Livi's calories to 50% across the board and see if she gains weight.  If she does, cut them again.  Really?  How do I make sure that she is getting all the nutrients for her growing brain?  I asked if there was any way to have a test run to find out what nutrients her body was actually absorbing and she didn't know of anything.  I know there is something out there; I just read about it but can't remember where.

We could pay for it out of pocket, but over the years it will add up to quite a bit of money and I really feel that since it's such a big part of the medical puzzle, it should be paid for.  So I'm going to try several different avenues, including contacting a company I used when I was a Chef, to try and find solutions for this problem. One thing I know for sure - the military has a waiver for just about anything if you can figure out how to do it. So I'm hoping that I can find a way to get a waiver from Tricare somehow.

Next Monday is our visit to Dr. Miller in Florida.  I don't feel prepared for this visit.  I have so many questions in my head but can't seem to access them anymore after this week of discussing so many details related to Olivia.

I am very glad to be going to see someone this week who is the expert on PWS and who will be answering my questions and not the other way around as it has been all week.  No matter which doctor or service I talk to, I'm the one educating them.  Not complaining (too much), I understand why, but I'm weary.  Very weary.

Favorite Therapy Tools for the first year of PWS

When Olivia first came home from the hospital, she could not move purposefully.  We had tons of physical, occupational, cognitive and speech therapy for her.  All the therapists would give us a different area to work on during the week - homework so to speak.  Our cognitive therapist gave us this book so I could find a way to sing and play with her.  It was a great book - shows the actions to take with the words and lots of childhood rhymes.  One of the best things about it was that my brain was overloaded with all the information I was learning about PWS, and my physical time was taken up with taking care of her.  I had very little mental or emotional energy left over just to play, and I definitely had zero creativity.  This book was great for that. 

She also gave us the bird.  It's a very old fashioned toy, and if you ever see it, snatch it up.  It has a deep toned, very pleasant sounding bell inside that dings when the bird is moved in any direction.  It's extremely easy to move.  In order to encourage Olivia to move, I used to place it between her thighs as close to her crotch as I could as she laid on her back.  Again, this was in the not moving much at all stage. She couldn't lift her head nor did she have the strength to hold on to even the simplest of toys, literally.  Her legs were the strongest part of her and they would occasionally move, or she might squirm with the slightest of movements.  So anytime any part of her moved, this bird would chime.  It was an immediate feedback for the tiniest of movement on her part.  She loved this bird, and it would come into play during therapy in all different ways during the past year. 

The other toy with the multiple birds is extremely easy to move.  With the slightest touch, the birds twirl and the toy rolls.  Again, this provided excellent feedback to any of her movements and encouraged her to move when she would accidentally touch it. 

The last toy that is her favorite is not pictured here.  It was examining room table paper - the paper from the table at the doctor's office.  I noticed that every time we took her there (weekly for the first two months), it seemed to be the only time she really moved was on that paper.  It's so noisy and crinkly, and again it provided loud, fun, immediate feedback to her movements.  So I asked them if they would give me some of that paper to take home and they gave me a small roll of it.  I would tear off sheets of it and lay her on it for tummy time or for back time and watch her try to move more to make noise. 

Time to move on, toys!!!  I donated them all to EDIS.  She's on to bigger and better things. 

Crazy Communication Milestone Day!

This past year and a half has been difficult in more ways than one.  Only recently did I realize that I really had hardly ever written down any milestone that Olivia has reached; so when I look back I am only sure of the specific date for a few things.  I'm really going to remedy that going forward.

Today was just a strange day in a really good way.  Livi has been on the cusp of doing a lot of things - ever since she started crawling the Monday before Christmas, it seems that her motor skills have just exploded.  It was as if her body and her brain finally realized she could move and do so much more than just sit there.  It took her almost a week to try and venture out of the area we did her therapy in all the time.  At first it was confusing to me, until I realized it was a sort of learned helplessness... she had always been in that area for stimulation and didn't realize she could go farther.  To combat that, we kept putting her in other areas of the house with things that crinkled (her favorites) a little out of her reach in the hallway outside the room.  Now it's thrilling to see her try and follow us from room to room.  She still doesn't do it as much as I would like, but it's neat to know she wants to be with us. 

Earlier this week, Amelia was playing dragon and roaring alot.  Sunday, right after Mia roared, so did Livie - who was right next to her.  It was so funny!  She did it several times after Mia, and then today as I was telling the OT the story and imitating what Livie did, she roared again. 

About two-three weeks ago at a play date, two of the moms said they heard Olivia say "baby" in context, but I didn't hear it then or since.  Between speech therapy and normal life today, she said baby, bye bye bear, bye bye bunny, grandma, and made the sign for eat in context and several times.  She doesn't really say mama a lot, but she has been able to say that one for a while.  She also has tried to say "eat" but with no sound coming out.  It looks sort of like a monkey grin - those real cheesy wide grins that squish the eyes shut.  She does it after I say, "eat, eat" to her and I was emphasizing the facial expression - drawing out the "e".  Try it and you will know what I am talking about.  It's kind of funny that she mimics the movement but can't quite get sound to come out.  All of these words are approximations, but they are in context and I will take it!

Our speech therapist is really an amazing woman.  We have been so blessed with our therapists.  She has so much knowledge and explains so much to us.  Janet told us that universally, once children get about 25 words in their vocabulary, they begin stringing them together in 2 word sentences.  It's neat to see Olivia starting this process.  It makes me wonder if she has the other words in her vocabulary but simply can't vocalize them enough for us to understand what they are.  I'm also reminded that with PWS, the receptive speech is much, much stronger than the expressive speech. 

 She has been wanting to walk so badly... she hates to sit down and actively fights against it when we are holding her up and need her to sit in a chair, on the floor or on our laps.  She tries to climb up our shoulders and bodies and stands on tippy toes at the windows trying to reach the blinds to play with them.  She bounces constantly and has been pulling herself to stand everywhere trying to reach things.  She's actually quite tall for a PWS child - 31 plus inches, 22 plus pounds and 17 months old.  She's WAY more inquisitive than I remember Amelia being at this stage.  Either that, or I have way more stuff on the counters now that she could pull off and I just notice it more. 

Olivia also walked today with a toy walker!  Our occupational therapist brought a Vtech Learning Walker she picked up from the local CAPA store, and Olivia took about 4 wobbly steps on it.  She would go about 3-4 steps with it slowly, then it got away from her and she would sink to her knees, pull herself up and then try again.  She was going from the therapist to myself and back again.  She was exhausted after therapy was over and slept an hour longer than normal for her nap. 

This time a year ago, I definitely did NOT see this happening in my future... after so many months of Olivia really not moving or talking much, it was hard to hold on to the promise that these kids do eventually gain a rough form of motor control, and some of the PWS kids do even better than that.  I'm so grateful we were able to start growth hormones at 4 months, and I wish we could have started them even earlier.  We just didn't have an endo that was current on PWS at the time, but now we have a great one.

Developmental Objectives

I've found some great blogs over the past few months that are helping me wrap my mind around some of the things I will need to be teaching Olivia. I'd rather be proactive and learn about it now so I can have tools available when the time comes. I'll probably still be behind the power curve because it takes me a while to get organised, but this is one with great thoughts and ideas that I really enjoy. It confirms many things I'm already doing with Amelia and shares some new information I could use in the future.

NOT JUST CUTE