Wednesday, April 25, 2012

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
Speech and language
Social skills
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.


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! "

Tuesday, April 24, 2012

Lions and Tigers and Therapy, Oh My! (Part 1)

Because of our upcoming move, the past few weeks have been a whirlwind of thinking a lot about therapy.  Thinking about therapies available in Jacksonville; checking out therapist references and resources; visiting schools and clinics to see which setting will work best for Olivia, getting on waiting lists (3-6 months for pediatric therapy.. wow) and researching what alternative therapies are in the area we are moving to.

 In addition, because Olivia will turn 3 and age out of the EDIS system (military early intervention) immediately after our move, I'm cramming on information about IEP's, Wright's Law, FAPE, IDEA, Section 504...who knew that special needs education was as acronym ridden as the military?  I'm learning an entirely new language in a crash course.

Last, but not least, some therapies I've wanted for Olivia for a long time (swimming, hippotherapy, yoga, brain/music, ABA) are closer to becoming available to me as she is getting older and we are negotiating those possibilities as well.  In the past three weeks we've added ABT therapy, added another supplement, received approval to start 6 hours a week of ABA therapy through Butterfly Effects and found a pediatric Occupational Therapist who is also a special needs yoga instructor who will come to our house and do yoga primarily with Livi, but also the whole family.

Whew.  Are you tired yet?  I am.


There is another meeting tonight, free, on Positive Behavioral Interventions.  I reallllllllly want to go to this one, but no children allowed and this time Rafe is working till 11pm.  He has to meet some Joint Chiefs of something or other and their guests at the Air Station when their plane gets in because Parris Island is hosting them all this week.  He has  never had to work this late the entire time we've lived in Parris Island.

Grrrrr.  And my respite provider isn't available tonight.  :((

Friday, April 20, 2012


Last night I wanted to go to a meeting held here in town about South Carolina Connections Academy - an online school similar to K-12.  I'm interested in learning about all of my options for schooling Olivia and Amelia in the future.  Rafe was going to watch the girls for me, but unfortunately he wasn't home in time for me to go without them.  What irony - the one night I go out without them turned out to be the one night he had to stay late for an all hands brief from General Amos.  Can't really walk out of that one early.

Olivia was already acting very out of character during dinner.  She threw her plate on the floor twice.  The first time I turned her high chair around to face the wall while I cleaned it up, trying to figure out how to say, "Don't throw your food" in a positive way.  It's only today that I figured out I should have said, "We keep our plates on the table when we are finished" or something similar.  Still not sure.  The second time she made a huge mess and I took her out of her high chair and told her dinner was finished.  I've never seen her so upset.  She cried and cried while I was cleaning it up.

At the meeting, she was squirming and screaming in my arms.  While normally I can put her down and she will play quietly near me, this time she was running down the aisle toward the presenter so fast that I had to run down after her - all the way to the end.  This happened 3 times during the night, because she would literally go limp and then frantically squirm out of my arms and she slipped away from me.  I was in the back of the room and finally moved to the hallway and peeked my head around the corner of the room to try and hear what she was saying after the first 10 minutes of this.  The information being presented was excellent, but I was missing so much of it that after 20 minutes, I just left with both the girls.  I did learn that if you do online school, they subcontract with special needs care providers for OT, PT.  And they do Speech Therapy over the internet, although I wasn't there long enough to find out how that worked.

It was such a frustrating evening even though it only lasted 30 minutes, and I couldn't help but think of the times to come.  No one there knew Olivia couldn't really understand like a normal 2.5 year old the concept of behaving.  I felt like a really awful mom because I kept getting dirty looks from the other parents there.  She understands (I think) some actions and consequences, but concepts are something I'm having a hard time figuring out how to teach her.  It all came so naturally to and with Amelia.  Earlier in the day I had gone to a presentation by Butterfly Effects on ABA therapy.  I think it's time for us to get involved with that so we have tools to respond appropriately to her behavior and don't accidentally reinforce it.   Yesterday I also switched her Speech to the clinical setting starting May 7.  All in all a busy day.

Surprisingly enough, Amelia told me this was "the best day ever!"  When I asked her why, she said it was because she was spending time with me.
Coming back from the commissary today, I turned down the street behind our house on Parris Island to see Rafe and Amelia over by the pull up bars by the BOQ. It's become their "thing" lately to go over there and exercise. Amelia saw me and began running fast and hard across the field. I was overwhelmed with love and joy seeing her run in her bright orange shirt and her long blond hair streaming in the wind behind her racing toward me.

When I finally made it back into the house, she was so excited to tell me about the "catapidders that emerged today". Rafe and I just looked at each other over her head and smiled, both of us making "Can you believe it?" faces at each other for our five year old saying "emerged" instead of "came out".

Which is what we probably would have said.  Our conversational skills are obviously far below the level of our five year old.  :)

Tuesday, April 17, 2012

Strawberry Coconut Smoothie

I had an opportunity to teach a Gluten Free Cooking class last week for the EFMP here on base.  It was really enjoyable.  I had forgotten how much I like teaching cooking classes and interacting with people who want to learn how to cook or learn more about how food works.  While I'll never work in a restaurant as a professional Chef again, this is a way to do one of my favorite parts of that job -  teaching Chef Apprentices.

For the demo, we made Gluten Free Pina Colada Pancakes.  The ingredients were a bit expensive, but the blow was softened by buying everything but the coconut sugar at the commissary.  I found the price literally doubled out in town for the specialty ingredients.  Yikes.  I had two of them and couldn't believe how long I stayed full.  I didn't have any pineapple crunchies so I subbed dried mango, papaya and pineapple instead.

I had some leftover coconut milk after the class, so I cooked it with some strawberries that we picked from Dempsey's Farm, water and fresh lime juice.  I pureed it and let it cool.  I noticed it doesn't separate like most smoothies I make after it sits for a while, so I really liked that.  Very, very filling.  Perfect texture for Olivia to drink as well, without worrying about spilling because it is moving too fast.

Here is the approximate recipe:

Coconut Strawberry Smoothie
8 - 12 cups quartered fresh strawberries
1.5 cans of coconut milk, canned
1.5 cans water
1 lime juiced
1 tbsp brown sugar

  • Simmer in Le Creuset or other heavy bottomed pan till berries are cooked.  Puree, chill.

I think this might have been really good with some of the roasted saigon cinnamon I have.  I'm guessing on the amount of water because I actually added it to cover the strawberries.

Illumination Flares

I love listening to Amelia when she finds a new word, many syllables long, to try out.  She carefully wraps her mouth around the word, speaking slowly and drawing out each syllable with delight.

After bible study tonight, Rafe went outside to look at the stars, something he does quite often at night. Our back yard is a huge soccer and baseball field, no lights.  Beyond that are just a few buildings and then the massive oak trees, marsh and ocean inlet.  The breezes are gorgeous coming off the water and you can smell oysters in the air.  There are few lights this side of the island and no traffic this time of night.  Or any time, really, except on the breakfast, lunch and dinner times of Marines going to work, coming home for lunch or coming home from work in the evening.  And even then, it's about 4-6 families this side of the island.

The stars are visible; although not as visible when we first moved here and they hadn't put up street lights yet.  I had forgotten until then how many stars were actually still visible when not polluted by the lights of the city.

Amelia went out with him tonight, and later when I went out with Olivia to meet them, she was snug in Rafe's arms as they were exploring the heavens together and he teaching her about the stars.  It sounds romantic, but I personally think he's teaching her star navigation in preparation for the zombie apocalypse and our run off the grid.

As I came toward them, Amelia turned to me and excitedly said, "Mommy, I've been watching the ee loom in a shun flares!  They look like stars with smoke and then snow and, and, and..."  She was going on and on about the flares.  She was learning to pinpoint their location on the island while the Marines played with fire somewhere off in the distance.  She actually was better at tracking the flares then I was, but that's probably because I'm old and decrepit and she's not.  :)  

I wonder what she'll remember when she grows up, and if she'll remember this magical time on Parris Island... walking in the dark by the water and the trees at night, listening to the wind and smelling the salty marsh air and looking at the stars.  And the illumination flares.