Here is another helpful link on car seats,
http://pediatrics.about.com/od/carseats/a/special_needs.htm
I am finding that almost all these special needs car seats start at $1000.00-$3000.00 plus shipping.
Unless you can find one used or use a regular car seat and custom fit it to your child with rolled up towels, and small pillows and neck pillows. Yes all this is extra work and will make the child hotter but this is what we have done for Jewel all along. We have never had a special needs car seat for her. Up until now she has fitted into regular car seats with rolled up towels, folded towels and her sisters in the back seat giving her support. They help re position her, put her legs in criss cross position when her hips are spasming and they put her head back in the car seat when she flops out. God bless sisters!
Thursday, September 15, 2011
... still looking at car seats and cost
http://pediatrics.about.com/gi/o.htm?zi=1/XJ&zTi=1&sdn=pediatrics&cdn=health&tm=159&f=10&su=p284.12.336.ip_p1051.4.336.ip_&tt=2&bt=0&bts=0&zu=http%3A//www.preventinjury.org/SNTtrainedPpl.asp
| The Automotive Safety Program has collected a list of child passenger safety technicians who have attended the training, "Safe Travel for All Children: Transporting Children with Special Health Care Needs." Individuals who have met the requirements to instruct the training are noted with "Instructor" after their names. Select a state or all states below to view the list. on the site you punch in your state and it will give you a listing like this one for Hawaii. |
| John Kaizuke Dept. of Health Hawaii State 1582 Kamehameha Ave. Hilo, HI 96720 808-933-0911 jtkaizuk@mail.health.state.hi.us  |
| J. Mike Meyer Shriners Hospitals for Children - Honolulu 1310 Punahou St. Honolulu, HI 96826 808-216-9989 jmeyer@shrinenet.org |
| Jill Taosaka Kapiolani Medical Center for Women & Children 1319 Punahou St Honolulu, HI 96826 808-483-4917 jillt@kapiolani.org |
| Mary Jo Sweeney Kauai Community College 3-1901 Kaumualii Hwy. Lihue, HI 96756 800-742-9606 maryswee@hawaii.edu |
more car seats
9/15/11
Car Seats, we are still looking and found this one;
It is a Special Tomato car seat for the special needs child.
For those who have a bigger budget for car seats check out this site;
http://www.specialtomato.com/specialtomatompscarseatsmall.html
Item# ST9288SCS
Price:$1,270.06
Copied and pasted from the site; "The Special Tomato Multi-Positioning Seat (MPS) can now be used in the Car! The special needs car seat version provides proper seating support for your child that has been crash tested and is safe for use in the car. The Special Tomato Car Seat is a soft, lightweight and durable seating surface with cushions that allow for customized support. The cushions move up and down on a hook and loop track allowing for growth of your child and length of use of the Car Seat. The cushions are made from a latex free material that is peel and tear resistant and impermeable to fluids. The cushions are supported by an outer shell that maintains position. Included with the Special Tomato Car Seat is Hip-Flex® adjustment that provides 30 degrees of pivot. This provides the proper alignment of your child's pelvis while using the special needs car seat from Special Tomato. The perfect solution to your car travel needs from Special Tomato!
Why is the Special Tomato Car Seat Perfect for Your Child?
Car Seats, we are still looking and found this one;
It is a Special Tomato car seat for the special needs child.
For those who have a bigger budget for car seats check out this site;
http://www.specialtomato.com/specialtomatompscarseatsmall.html
Item# ST9288SCS
Price:$1,270.06
Copied and pasted from the site; "The Special Tomato Multi-Positioning Seat (MPS) can now be used in the Car! The special needs car seat version provides proper seating support for your child that has been crash tested and is safe for use in the car. The Special Tomato Car Seat is a soft, lightweight and durable seating surface with cushions that allow for customized support. The cushions move up and down on a hook and loop track allowing for growth of your child and length of use of the Car Seat. The cushions are made from a latex free material that is peel and tear resistant and impermeable to fluids. The cushions are supported by an outer shell that maintains position. Included with the Special Tomato Car Seat is Hip-Flex® adjustment that provides 30 degrees of pivot. This provides the proper alignment of your child's pelvis while using the special needs car seat from Special Tomato. The perfect solution to your car travel needs from Special Tomato!
Why is the Special Tomato Car Seat Perfect for Your Child?
- Choose from 2 cushion sizes to lengthen the life of the car seat by an average of 7 years
- Choose from 2 headrest options:
- Standard Headrest
- Headrest with Laterals
- Hip-Flex includes 15 degree hip extension and 15 degree hip flexion
- 5-Year Warranty
- Small Size Weight Capacity is 80 lbs
- Made from Latex Free materials
- Impermeable to fluids
- Peel and Tear Resistant
- Included with the MPS Car Seat are:
- Adjustable Seat, Head and Back Cushions
- Seat Shell
- LATCH Strap
- Tether Strap ® must be used
- Safety Attachment Straps ® For use outside the vehicle
- Has been successfully tested and approved for aircraft travel (FAA approved) PLEASE NOTE: NHSTA School Bus Rules/Regulations do not include special needs car seat regulations for children over 40 lbs. The MPS Car Seat is not tested for INSTALLATION DIRECTLY INTO A SCHOOL BUS SEAT. Please note that we do offer the Push Chair Kit which conforms to WC19 standards for use with a tie down system in transport. PLEASE NOTE: The Car Seat does not come with a Footrest. The Footrest cannot be used while the seat is being used in a vehicle. PLEASE NOTE: The Car Seat cannot be used in Canada. PLEASE NOTE: There is a 10-year Expiration Date for the MPS Car Seat and the MPS Push Chair Kits for use during transportation! The MPS Seat itself can be used beyond 10 years with the Wooden Mobile Base or attached to a standard chair for more than 10 years!"
CAR SEATS
9/15/2011 Thursday
Still researching the issues with car seats;
Jewel has out grown her $50 Walmart car seat, we have found great tall supportive booster seats to replace this one but they all do not come with a 5 point harness. Jewel needs a 5 point harness to keep her safe in the car. Even though Jewel is 10 and tall, her muscle control is pretty much like that of an infant, so she needs the support of the straps to keep her in the car seat.
Special needs car seats are crazy expensive putting almost all of them out of our reach.
So we have been researching on line, on face book and asking around.
I went to our local auto parts store the other day because the owner has been a part of the drag race circuit for years. I enquired about enlisting his help with ordering a 5 point harness and installing it in my car, since the drag racers have to do this all the time for their vehicles. I think this is a brilliant and affordable, viable, and sustainable idea. Someone should start this, it will save the special needs community tons of money, as long as it is done with safety standards and integrity in mind. Someone out there should become certified to install 5 point harnesses in our cars for our children.
Britax was one of the car seats that some families mentioned on face book.
They have head safety technology and you can custom fit your child, you log in your child's age, weight and hip measurements and they will fit you with a car seat! Pretty awesome, I love this part of fitting the car seat to your child's measurements, brilliant and logical!!!! =]
It will cost you around $400 plus shipping. If that is in your budget or maybe you have a community of support go and check it out.
http://www.britaxusa.com/car-seats
Still researching the issues with car seats;
Jewel has out grown her $50 Walmart car seat, we have found great tall supportive booster seats to replace this one but they all do not come with a 5 point harness. Jewel needs a 5 point harness to keep her safe in the car. Even though Jewel is 10 and tall, her muscle control is pretty much like that of an infant, so she needs the support of the straps to keep her in the car seat.
Special needs car seats are crazy expensive putting almost all of them out of our reach.
So we have been researching on line, on face book and asking around.
I went to our local auto parts store the other day because the owner has been a part of the drag race circuit for years. I enquired about enlisting his help with ordering a 5 point harness and installing it in my car, since the drag racers have to do this all the time for their vehicles. I think this is a brilliant and affordable, viable, and sustainable idea. Someone should start this, it will save the special needs community tons of money, as long as it is done with safety standards and integrity in mind. Someone out there should become certified to install 5 point harnesses in our cars for our children.
Britax was one of the car seats that some families mentioned on face book.
They have head safety technology and you can custom fit your child, you log in your child's age, weight and hip measurements and they will fit you with a car seat! Pretty awesome, I love this part of fitting the car seat to your child's measurements, brilliant and logical!!!! =]
It will cost you around $400 plus shipping. If that is in your budget or maybe you have a community of support go and check it out.
http://www.britaxusa.com/car-seats
Wednesday, September 14, 2011
helpful face book pages for the special needs families
9/14/11 Wednesday,
I wanted to share some of the more helpful face book pages that I have found for the special needs community;
I love EXCEPTIONAL FAMILY, they are family friendly and full of great posts, run by a family for families.
MEDICAL SUPPLY EXCHANGE, is a face book page where families advertise medical supplies they are willing to sell for cheap, some families just want you to pay for the shipping through pay pay and other posts are families looking for medical supplies that their insurance will not cover or they can not afford. It is an amazing and creative way to help this community.
ZACK'S LIST;your pediatric equipment exchange source from Canada
SPECIAL NEEDS SWAP MEET; have to request to join
DANIELLE'S FOUNDATION, a great non profit created for cerebral palsy and brain injured children.
MY CHILD WITHOUT LIMITS
THE COFFEE KLATCH, for all special needs, lost of information.
SNOWDROP CHILD DEVELOPMENT
BEST BUDDIES INTERNATIONAL
FRIENDSHIP CIRCLE OF MICHIGAN
ONEVOICE
A4CWSN-iPad apps
MOMSWITHAPPS
LILLIE'S PAD
APP STORE
DAN HABIB; he promotes inclusion for our children in schools, he made Including Samuel documentary and others he is working on, he has conceived and promoting I am Norm campaign to redefine normal.
INCLUDING SAMUEL; documentary made by Dan Habib on inclusion.
CERTAIN PROOF; A QUESTION OF WORTH; about the documentary being hosted and screened in your neighborhood or school.
CAMP IMUA; special needs camp for Maui counties school aged community.
IMUA FAMILY SERVICES, Maui counties therapeutic servesis for birth to three years of age, they are the only early intervention available on Maui that specializes in pediatric therapies.
UNITED CEREBRAL PALSY
CEREBRAL PALCY FAMILY NETWORK
Maybe you will make a face book page that will help other families :)
..... and there is so much more, new pages being made by families daily! It is easy to get lost and loose track of time on the computer so I go early morning when the house is sleeping and this is when I do my research. Happy trails on the quest to connect to the large cyber community out there.
I wanted to share some of the more helpful face book pages that I have found for the special needs community;
I love EXCEPTIONAL FAMILY, they are family friendly and full of great posts, run by a family for families.
MEDICAL SUPPLY EXCHANGE, is a face book page where families advertise medical supplies they are willing to sell for cheap, some families just want you to pay for the shipping through pay pay and other posts are families looking for medical supplies that their insurance will not cover or they can not afford. It is an amazing and creative way to help this community.
ZACK'S LIST;your pediatric equipment exchange source from Canada
SPECIAL NEEDS SWAP MEET; have to request to join
DANIELLE'S FOUNDATION, a great non profit created for cerebral palsy and brain injured children.
MY CHILD WITHOUT LIMITS
THE COFFEE KLATCH, for all special needs, lost of information.
SNOWDROP CHILD DEVELOPMENT
BEST BUDDIES INTERNATIONAL
FRIENDSHIP CIRCLE OF MICHIGAN
ONEVOICE
A4CWSN-iPad apps
MOMSWITHAPPS
LILLIE'S PAD
APP STORE
DAN HABIB; he promotes inclusion for our children in schools, he made Including Samuel documentary and others he is working on, he has conceived and promoting I am Norm campaign to redefine normal.
INCLUDING SAMUEL; documentary made by Dan Habib on inclusion.
CERTAIN PROOF; A QUESTION OF WORTH; about the documentary being hosted and screened in your neighborhood or school.
CAMP IMUA; special needs camp for Maui counties school aged community.
IMUA FAMILY SERVICES, Maui counties therapeutic servesis for birth to three years of age, they are the only early intervention available on Maui that specializes in pediatric therapies.
UNITED CEREBRAL PALSY
CEREBRAL PALCY FAMILY NETWORK
Maybe you will make a face book page that will help other families :)
..... and there is so much more, new pages being made by families daily! It is easy to get lost and loose track of time on the computer so I go early morning when the house is sleeping and this is when I do my research. Happy trails on the quest to connect to the large cyber community out there.
Incentive Spirometer helps our reading lessons
9/14/11
Reading with Jewel is a progressively slow and steady process.
She has become a willing and eager student.
I am using Teach your child to read in 100 easy lessons by Siegfried Engelmann, Phyliss Haddox, Elaine Bruner. It takes about 20+ minutes. (Along with the Bob books.) The red print is for you to read to your child and the first red print says; I'm going to teach you how to read. ...The work is hard, but I think you can do it. ... =] I like the positive parent queuing, it is simple but some lessons may need breaks or to be divided into two lessons. Jewel insists on writing some of the letters on her dry erase board tray and even though this is difficult it is very satisfying for her. This way the letters are reinforced by her seeing, me saying, her saying, us writing. She gets very short of breath which makes talking very challenging so we break from the lesson and do some Spirometer blowing, (Incentive Spirometer). It is the blue one and the mouth piece is the straw like one. This helps her take deep breaths in to be able to blow the ball up the shaft. Relaxation and breath are key. Staying calm yourself is critical because our children pickup our feelings and mirror them back to us. We have been playing card pairs and Jewel is getting better at remembering where the cards are! Any blow toy can help the child enjoy playing and improving their relaxation, deep breathing, and lip closure, any way you can keep it fun will help the duration of the activity and attitude of the child stay positive because the blowing can become work and cumbersome. Spirometers can be purchased for as little as $5 and some blow toys can be purchased at the dollar store. But never leave the child with small toys that can lodge in their throats and suffocate them. Keeping it fun is our goal. Every child needs to have fun and play, we learn a lot through playing and this is a way we try to incorporate both. We are still using ice pops for helping Jewel with swallow strengthening and lip closure, though I have to limit it one per day since there are too many dyes and food coloring additives that are not good for the body. We use the otter pops with apple juice from Cost co but there are still chemicals and additives in these.
Reading with Jewel is a progressively slow and steady process.
She has become a willing and eager student.
I am using Teach your child to read in 100 easy lessons by Siegfried Engelmann, Phyliss Haddox, Elaine Bruner. It takes about 20+ minutes. (Along with the Bob books.) The red print is for you to read to your child and the first red print says; I'm going to teach you how to read. ...The work is hard, but I think you can do it. ... =] I like the positive parent queuing, it is simple but some lessons may need breaks or to be divided into two lessons. Jewel insists on writing some of the letters on her dry erase board tray and even though this is difficult it is very satisfying for her. This way the letters are reinforced by her seeing, me saying, her saying, us writing. She gets very short of breath which makes talking very challenging so we break from the lesson and do some Spirometer blowing, (Incentive Spirometer). It is the blue one and the mouth piece is the straw like one. This helps her take deep breaths in to be able to blow the ball up the shaft. Relaxation and breath are key. Staying calm yourself is critical because our children pickup our feelings and mirror them back to us. We have been playing card pairs and Jewel is getting better at remembering where the cards are! Any blow toy can help the child enjoy playing and improving their relaxation, deep breathing, and lip closure, any way you can keep it fun will help the duration of the activity and attitude of the child stay positive because the blowing can become work and cumbersome. Spirometers can be purchased for as little as $5 and some blow toys can be purchased at the dollar store. But never leave the child with small toys that can lodge in their throats and suffocate them. Keeping it fun is our goal. Every child needs to have fun and play, we learn a lot through playing and this is a way we try to incorporate both. We are still using ice pops for helping Jewel with swallow strengthening and lip closure, though I have to limit it one per day since there are too many dyes and food coloring additives that are not good for the body. We use the otter pops with apple juice from Cost co but there are still chemicals and additives in these.
Monday, September 12, 2011
documentary, A Certain Proof - a question of worth
9/12/11 Monday
Aloha
Daily I have taken to research the face book pages that have been put together by organizations and families designed for the 'special needs community'. I do not like to separate myself from other families by saying we are 'special needs' because I believe at the heart and core we are all the same and as families our needs are the same. We just have to see outside of the box we have labeled ourselves into.
A family with a child who is on the path to being a prima ballerina is on a journey that becomes specialized just like having a child who is differently abled. Same but different.
This morning I found this documentary and viewed its trailer;
www.certainproof.com
I hope that you are able to view this trailer in your hometown, I have e-mailed Footpath pictures to see if they will be doing a screening on Maui, info@footpathpictures.com
Their documentaries are designed to make a difference.
Are we worth any less because of our inability to walk or talk?
Are we worth more because we are beautiful or have nice things?
It is far too easy for me to say that we are all of worth no mater our race, creed, income, education, talent, and ability. For in our daily lives we automatically catalog and separate the outside world in our brains with out even thinking about it. We all have prejudices but through exposure, education and relationships we can build a better understanding of the breadth, depth, and scope that worth really is.
When Jewel was not developing as her sisters had I did not understand or know what to do.
I thought she was broken, and I cried a lot because I felt so helpless.
Daily she has and is teaching our family about worth and the gift of life, sacrifice, struggle and joy.
We are learning more about ourselves through her limitations.
We have to see beyond the 'box' of limits the world has put on human life, we have to tear down the labels and make our own definitions because the burden of proof is a celebration of our lives as we live together striving always to be love.
Aloha
Daily I have taken to research the face book pages that have been put together by organizations and families designed for the 'special needs community'. I do not like to separate myself from other families by saying we are 'special needs' because I believe at the heart and core we are all the same and as families our needs are the same. We just have to see outside of the box we have labeled ourselves into.
A family with a child who is on the path to being a prima ballerina is on a journey that becomes specialized just like having a child who is differently abled. Same but different.
This morning I found this documentary and viewed its trailer;
www.certainproof.com
I hope that you are able to view this trailer in your hometown, I have e-mailed Footpath pictures to see if they will be doing a screening on Maui, info@footpathpictures.com
Their documentaries are designed to make a difference.
Are we worth any less because of our inability to walk or talk?
Are we worth more because we are beautiful or have nice things?
It is far too easy for me to say that we are all of worth no mater our race, creed, income, education, talent, and ability. For in our daily lives we automatically catalog and separate the outside world in our brains with out even thinking about it. We all have prejudices but through exposure, education and relationships we can build a better understanding of the breadth, depth, and scope that worth really is.
When Jewel was not developing as her sisters had I did not understand or know what to do.
I thought she was broken, and I cried a lot because I felt so helpless.
Daily she has and is teaching our family about worth and the gift of life, sacrifice, struggle and joy.
We are learning more about ourselves through her limitations.
We have to see beyond the 'box' of limits the world has put on human life, we have to tear down the labels and make our own definitions because the burden of proof is a celebration of our lives as we live together striving always to be love.
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