Photos from Oahu

I just picked up the 4 rolls of film of almost invasive documentary style photographs that I took during our trip to Oahu. I have yet to convince my mother to let me upload them (she said she looks too tired and doesn't like that she is holding her cell in a lot of the photos)...and I'm also too lazy to scan them right now.

In the meantime, here are some digital photographs.

I coerced my mom to go to the city (ward shopping center to be exact) so that we could have dinner with my future roommate Laura. Let's just say that driving from Kaneohe to the city isn't my mom's favorite memory.

I think Jewel was crying because she wanted some of my free 7-11 day slurpie-even though mom got a weird mango flavored slurpie. lol

Our host family Greg and Michelle and their wonderful puppies which Jewel loved.

Anat Baniel Method

7/18/13  Wednesday

So much time has gone by since our last post, and our family has done a lot of living, loving and learning.

I have been focusing on being more present with all of my children, especially as the older two prepare to go off to college.  This time together will help our family as we shift into the next season of our lives- living away from each other for the first time.

I want to share about ABM, Anat Baniel Method.

Anat's book is called; Kids Beyond Limits.  This book is a must read because it is full of hope and practical application.  I am loving each page as I dissect and memorize the teachings and lessons shared.

"Movement is life; without movement life is unthinkable"-Moshe Feldenkrais

I only learned about ABM recently and shortly after everything fell into place for Jewel to see a practitioner that does ABM. It all started when I was cleaning one of my client's Villa last month.  She is a doctor and recommended Anat Baniel's book to me.   

I began researching and found Anat's site and videos.  I watched every video that I could find on youtube of Anat Baniel working with special needs children. Her method seemed very organic and holistic. I felt comfortable learning about this method-a stark contrast with how I felt while researching the hyperbaric oxygen therapy.

I am a member of many groups on facebook and so I started asking parents what they thought of ABM? Had they tried it? What were their results?  I then ordered the children's seminar dvd from Anat's website (10hrs long) and ordered her book from Amazon.  While checking the facebook page of cp daily living Michele told me that an ABM practitioner  was coming to Oahu.  Within two days it all came together; purchased three tickets to Oahu (one for me, Jewel, and Makena). I brought Makena along to help and learn, for two is better than one, and I just didn't think I could do it on my own since Gary had to be home with Raven for her GED test. I had enough funds for the 10 sessions / lessons (two a day).  And my sister in law found a dear friend of hers who was willing to put us up and loan his car to us for the duration of the stay.  

We stayed in Kaneohe and the practitioner was in Waimanalo. That side of the island was so beautiful and peaceful. We hung out at the beach in-between lessons and ate peanut butter and guava banana sandwiches, drank lots of water, played and lived slowly.  We shared dinners with our hosts and ate left overs.  The visiting practitioner, VK made the prices very affordable for families.

Going to Oahu I had no ideas, limitations, attachments or expectations. We just went to see if this gentle method could help Jeweliana. I share our journey and path to ABM with joy in my heart, hoping it will help some family.

The sessions / lessons brought calm to Jewel's body, leaving each time with less spasticity and tightness.  I was a bit sad coming back home for there is no support for continued lessons.  It was a bit of the post ABM blues. But today Jewel's P/T who does Myofascial release on her said that she has never seen Jewel's hands so relaxed and her head with such control! Whoop!

Then her O/T said the same thing later that day, adding that Jewel has never weight bared on her hands and knees like she did today! 

Yesterday our chiropractor got to work on Jewel's back for the first time because she tolerated lying on her tummy! :) 

I am so encouraged by these visible improvements.

Will these connections / gains stay? I hope so.

I am still reading Anat's book with diligence and trying to implement all that I learn. Today and yesterday we painted with water colored pencils on her knees and toes, hoping to bring her attention to her body. I am trying to keep it light and fun, with an open mind and full heart.

Thank you Anat Baniel and thank you VK for this gift of learning with possibilities of miracles.

May the lessons of living life to our fullest potential continue, and my prayer is for all children with special needs to be able to get ABM lessons.

Love is always the answer <3

I just got told about Anat Baniel yesterday,
She has her own web site and many youtube videos;
Check it out;
 http://www.anatbanielmethod.com/
http://www.youtube.com/watch?v=PPTPG45nJVw&list=UU194BjK3VJIp8_VZJdSPf7w&index=6&feature=plcp
http://www.youtube.com/watch?v=0S1cGOcmAYE&feature=related

Here is a link for you to check out; it is all about speech and toys that can help with strengthening and muscle memory.                http://speech-language-pathology-audiology.advanceweb.com/Editorial/Content/PrintFriendly.aspx?CC=12448

Vote for Jewel!!!

Vote for Jewel to win a wheelchair accessible van!!!! only 4 days left to vote, so we need EVERYONES help to win!!!!! :-) share with your friends and vote for Jeweliana here: http://www.nmeda.com/mobility-awareness-month/heroes/hawaii/kihei/1997/jeweliana-gadient

Santa' s Red Christmas Bike

One of the highlights of this year was brought by Santa Clause or should I say one of his helpers.
Jewel woke up to a red Rifton trike with a huge gold bow just sitting in our living room on Christmas morning.
"Wow Bikey", was all that Jewel could say.  She just could not believe it, for a bike has been on her list for at least four years.  I think she may have given up on this bike ever arriving.
She needed all the attachments to be able to ride; a new hip adductor, new back rest, extra head and neck support, side panels for the upper body, chest harness.
We found a wonderful physical therapist who was willing to order the extra parts for no charge and we got a 25% discount due to the order being made by a certified therapist who owns a clinic.  You see there is help all around, you just have to look, knock and keep asking until you find the person who is willing to help.  Thank you Heather- you are an angel! <3
Sevenhundredtwentydollars and a few weeks later....  the box arrived with all the parts to keep Jewel in the bike.
Our lovely office lady has allowed us to keep the bike in the electric room, so I do not have to carry it up 37 stairs, thank you Leslie :)
Our friends who are professional bikers gave Jewel a real bike team jearsy to wear on her bike- thanks Heather and Jeremy!  It does make her go fast!
With a lot of trial and error we have figured out how to put her in her "bikey" correctly.  She tends to slip and loose her posture if you don't get it just right.  We take her out, no matter the effort, until we get her in just perfectly.  This will ensure a good ride, keeping form and posture a priority.
The seat was leaving broozes on Jewel's butt  even with a diaper on for padding.  My good friend Liz suggested a gel seat cover and it has been the most affordable solution!  Liz was Santa's helper, since her son out grew the Rifton trike they gave it to Jewel.  Liz you are an angel and absolutely Rock.  This bike has revolutionized our lives.  Jewel can ride on it for an hour now, though she has had to work up to this. She was wearing her SPIO thereputic gloves, which we sent back for a larger size and we can't wait for them to arrive.  It takes two of us to put Jewel in her "bikey" as she calls it.  After she is secure, we hunch over her and work on stretching out her arms to get them to the handle bars.  Since we have been doing this her arms are a lot looser.  It takes thirty minutes of bike riding,  consistent arm stretching to see her body changing, especially her arms getting softer.  It is well worth the effort.  Now Jewel is getting more outdoor time, she gets to see the dogs that come out for their walks.  We tried to take Grace out with us and have decided that it is safer with her at home.  She is too excitable and tends to pull at me almost pulling us down, bikey and all.
We push Jewel on the grass and in the outer perimeters of the tennis courts when no one is playing.  One day she was fussing and crying and I was frustrated because I could not understand her, when out from the other court a gentle man appeared on roller blades.  He wore a smile as his silver hair blew in the wind, with out a word he put his skull candy head phones over Jewel's ears and instantly her upside down smile turned right side up.  She was smiling and happy, he rode behind her on his rollerblades as she was attached to his ipod.  The magic he brought to our day was music.  So I saved up to get her request; "cherry red" skull candy headphones and she uses her sister's ipod and with the help of the store manager of the local sports authority, we purchased a red head band to keep on the head phones!

Serendipity


The other day Jewel said, "I love you", and I said, "I love you too", and she said, "Bikey".
"I love Bikey" and so do we.

Here is the Rifton page for viewing the trike;
http://www.rifton.com/products/mobility/adaptivetricycles/

Six-word sentence

Makena brought some magazines home and I was reading The Oprah Magazine, Express yourself /February 2012 / Volume 13, number 2.  Page 126 talks about Larry Smiths challenge to fans inspired by Ernest Hemingway's legendary shortest of short stories ("For sale: Baby shoes, never worn")

Jewel's six-word sentence that describes herself is;

"A super great and awesome girl."  =]

And that you are Jewel,  I am happy to see that you have a great self image!

Mine would be; "We're here to help one another."

What is your story in six words?

SPIO - therapeutic gloves

Jewel misses her Spio gloves, I had to send them back for a slightly larger pair.

My friend has been using these gloves with her son with amazing results, so I had to try them for Jewel.
check out their site.

http://www.spioworks.com/Page.aspx?nid=2

I have found the person on the phone most helpful and knowledgeable.  We will try to get Jewe's insurance to get the vest and short pants but if we have to get them it is worth saving up for them.

SPIO stands for; Stabilizing Pressure Input Orthosis.  The company can help to give you the medical codes for your doctor to write the prescription.  The products offer support with stability and proprioceptive deficits.  This product was designed by two mothers!  Cheryl Allen and Nancy Hylton collaborated their knowledge and brilliant ideas to help not only their children but ours- A heart felt Thank you ladies!
Dynamic Family Services owns SPIO and their products.  They are a nonprofit organization helping our children with special needs reach their full potential.

 Their gloves, shorts, pants, vests and shirts help children with cerebral palsy, spastic quad, post hip surgery, autism, global development delays, possible angelman's, gross motor delays, hight tone extremities, low tone trunk, hypotonia, reflux and possibly more.  Each glove was thirty dollars with shipping on top of that.  This is expensive but I assure you they work and I will try to post a photo of Jewel wearing her gloves.  It is worth saving up for these, maybe asking for birthday or Christmas gifts to go towards getting some of these items for your child.

When Jewel had her gloves on she instantly had the hand posture of a functional hand.  This was very exiting and I did not want to send the gloves back but they were just a few cm too snug.  We are checking the mail and can not wait for the return of her gloves.  These gloves can be worn through out the day as well.

I am happy to share this information and I know that these products will help your child.

Never blame the child

April 24, 2012
Wednesday morning,...

One of the things I remember from dog training at HCI is that "it is never the dog's fault but always the handler".  What this means is if the handler is giving the wrong cues or commands this will confuse the dog, if the handler is not paying attention to the dog, he will miss the dogs subtle cues that will bring on the behavior that you may not want.

Yesterday morning while feeding Jewel breakfast, I misses a subtle cue from her and just went on with the business of the morning.  It is important for her to eat a good nutritious breakfast, and it is important for me to know that she has started her day with a meal for a champion.  Jewel asked if Grace could take her stuffed animal Tutu-dog back to it's bed.  I figured that this was not going to happen since we have not taught Grace to do this, so I just carried on feeding Jewel with a short response that this was not a good idea.  There was a lot of other things happening around us with the rest of the family up.  The I noticed Jewel's tears and try as I may I could not figure out what her need was.  I had to leave for work and was sad to leave Jewel upset and resisting her breakfast.

Early this morning Gary and I were discussing the information that is on line about Aids/helpers/teachers who bully and or verbally abuse their special needs students in their class room and care.  Gary's response was, 'never blame the child.'  If the child is 'acting up' or acting in a manner not usual for this child's personality, then we all need to look closer at ourselves and 'ask what we are doing wrong.'  So back to yesterday at breakfast, .... after I had left for work Gary asked if I had made Jewel upset, "no" came the answer from Jewel.  So he went down the list until he named Grace and she said "yes" for Grace.  Now obviously Grace the good dog did not make Jewel upset, it was that I would not take the time to work with Jewel and Grace during breakfast.  I did not show respect and due consideration to Jewel's request and feelings.  This was not an absurd request and I could have had Grace come and do a 'visit' with Jewel.  This is when Grace comes and puts her head on Jewel's lap, which always makes Jewel happy.
Gary figured out the problem because he took the time to ask questions, then he discussed with Jewel why Grace could not put Tutu-dog to bed.  With time and attention through conversation, Gary was able to settle Jewel down and she finished up her breakfast like a champ.  Too often we blame the child who is not responding or acting-up.  A child with special needs and who is non-verbal or has limited speech is often miss-understood and then blamed for our lack of compassion or our lack of understanding or education.

Jewel is verbal but not like us.  She uses short words that sum up the story or request.  I/we need to come in closer to follow her cues.  She is very expressive with her eyes and face.  I have to remember to communicate with in her communicative style and not mine.  And thus remember to teach to her style and not mine!

Such a simple solution in the end which can avoid a lot of tears and drama.  Once again I see that Love is the most powerful four-letter word.

"Success travels in the company of very hard work.  There is no trick, no easy way."-Coach John Wooden

photos of jewel in chair for Lee