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/
Friday, April 27, 2012
Wednesday, April 25, 2012
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?
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.
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
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
Monday, April 23, 2012
Friday, April 20, 2012
awarded monetary help
Aloha :)
So much has happened since the new year and I have been in the thick of it all, living life to the fullest with my girls growing up so quickly.
I am very happy to share that Jewel was awarded some monetary help through Daniell's foundation;
May I encourage you to check out their web site and face book page for information and support.
We will start her therapy as soon as the funds arrive.
From our home to yours at Danielle's Foundation we express our heartfelt appreciation and gratitude for awarding this grant money for therapy for Jewel, on her journey to reach her full potential! :) Mahalo!
We were given a link which I would love to share for those who need more help and support with the head and neck in their wheel chair, check out the Stealth Products web site and pdf page;
http://www.stealthproducts.com/pdfs/2008_i2i_2.pdf
Believe in the potential of your child and their capacity to develop abilities in the future, which have yet to be unlocked, discovered, learnt, achieved and accomplished.
Never, never give up,... if you show up for life each day with a "positive- can do attitude", your child will succeed.
Aloha Ivana
So much has happened since the new year and I have been in the thick of it all, living life to the fullest with my girls growing up so quickly.
I am very happy to share that Jewel was awarded some monetary help through Daniell's foundation;
Cerebral Palsy Children
www.daniellesfoundation.org/
May I encourage you to check out their web site and face book page for information and support.
We will start her therapy as soon as the funds arrive.
From our home to yours at Danielle's Foundation we express our heartfelt appreciation and gratitude for awarding this grant money for therapy for Jewel, on her journey to reach her full potential! :) Mahalo!
We were given a link which I would love to share for those who need more help and support with the head and neck in their wheel chair, check out the Stealth Products web site and pdf page;
http://www.stealthproducts.com/pdfs/2008_i2i_2.pdf
Believe in the potential of your child and their capacity to develop abilities in the future, which have yet to be unlocked, discovered, learnt, achieved and accomplished.
Never, never give up,... if you show up for life each day with a "positive- can do attitude", your child will succeed.
Aloha Ivana
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