Sunday, May 29, 2011

America the Beautiful – National Parks and Federal Recreational Lands Pass – (Free Access Pass)

Hello RettGirls!

This week at we are featuring the America the Beautiful – National Parks and Federal Recreational Lands Pass – (Free Access Pass). You can find out all about it and more in our Product Reviews under...drumroll please.....Travel/Camps!

Last year a friend mentioned having this pass and I thought in all my blondness,"How cool for you." Ding. Never dawned on me that this was something available for all persons with disabilities.

This weekend another Mom sent me the link and low and behold..How cool for ALL OF US? Not only can your RettGirl get into any National Park in the can everyone riding in her vehicle! Up to 4 people!

This card also entitles up to 50% off extra fees at parks like, boating, camping and equipment rental.

The card is easy to obtain but you must apply in person with documentation from a physician or your SSI documentation.

Think of all the plans you can make without the worry of entry fees and accessibility!


Details from the website:

America the Beautiful – National Parks and Federal Recreational Lands Pass – (Free Access Pass)

How to Obtain an Access Pass Access Pass Use Access Pass Benefits

The National Park Service is an important participant in the new Interagency Pass Program which was created by the Federal Lands Recreation Enhancement Act and authorized by Congress in December 2004. Participating agencies include the National Park Service, U.S. Department of Agriculture - Forest Service, Fish and Wildlife Service, Bureau of Land Management and Bureau of Reclamation.

The Access Pass is a lifetime pass for U.S. citizens or permanent residents with permanent disabilities. Documentation is required to obtain the pass. Acceptable documentation includes: statement by a licensed physician; document issued by a Federal agency such as the Veteran’s Administration, Social Security Disability Income or Supplemental Security Income; or document issued by a State agency such as a vocational rehabilitation agency.

The pass provides access to, and use of, Federal recreation sites that charge an Entrance or Standard Amenity. The pass admits the pass holder and passengers in a non-commercial vehicle at per vehicle fee areas and pass holder + 3 adults, not to exceed 4 adults, at per person fee areas (children under 16 are admitted free). The pass can only be obtained in person at the park. The Access Pass provides a 50 percent discount on some Expanded Amenity Fees charged for facilities and services such as camping, swimming, boat launching, and specialized interpretive services.

In some cases where Expanded Amenity Fees are charged, only the pass holder will be given the 50 percent price reduction. The pass is non-transferable and generally does NOT cover or reduce special recreation permit fees or fees charged by concessionaires.


All the info you need on this and more can be found by clicking

America the Beautiful – National Parks and Federal Recreational Lands Pass – (Free Access Pass)

Have a great day!

Terri V~For RettGirl

Monday, May 23, 2011

School Stuff

Good Day Rett Girls!

We at want to remind everyone about our School Stuff tab!

As the school year ends, we are all knee-deep in IEP's, goals, communication and more.
Several of us have girls going to new schools, and we are overwhelmed with what we want to share with therapists and teachers.

Our School Stuff category is a place for everyone to use as a resource ... an abundance of information is just a few clicks away. Our resources are gathered from people all over the country. We welcome your additions, too!

Here is the place where you and your daughter's team can find information on books, websites, resource papers, software and links about Education and Rett Syndrome! Tons of stuff here that really goes into how a RettGirl's mind works with her body. You will find invaluable information on:

Apraxia and how a RettGirl's brain works with her body
Eye gaze
How to ask
How to respond
Lack of Consistency does not mean lack of intelligence
Therapy Tips
Equipment and software that works






Care Notes

IEP Bank

Apple iPAD page with info and helpful apps

We urge you to pass this information on to your teachers, schools and therapists!

Have a great day!

Terri V~For RettGirl

Sunday, May 15, 2011

Large Elite™ Reclining Shower Chair

Good Day RettGirls!

This week at we are featuring the Large Elite™ Reclining Shower Chair!

You can find this wonderful back saver in our Product Reviews under Bath / Toileting!

I absolutely love this chair and wish I had known about it before I had our insurance pay for a non mobile one.

Recently, on a trip, I watched a family of a RettGirl lift her into this chair, roll her down the hall into the shower and roll her back to her room and slide her onto her bed. She is completely immobile, and this chair has been such a great thing for them and for her.

For those of you with girls that are getting too heavy to carry and have roll in showers this product is really worth it. My friends informed me that their insurance covered it completely and it only took a few weeks from order to home. Their daughter is 5'2" and 104 pounds. She was all smiles as she rolled back down the hall out of the shower! So great to see!

No more lifting from the bed, down the hall, then lowering into a tub or onto a seat just to repeat the process all over. Makes my back hurt just thinking about it!


From the Company Website:
NEW from Columbia Medical, the Elite™ Reclining Shower Chair Only is uniquely designed to maximize safety during bathing. Until now, caregivers and parents of children and adults with special needs have had to make up to as many as 4 or more transfers to get them from their beds to wheelchairs to bathtub and back again when bathing has been completed.

The Elite™ Reclining Shower Chair Only is a rolling shower chair frame that offers recline features for children with mild to more severe levels of physical involvement. The Elite™ Reclining Shower Chair Only offers an independently adjustable backrest and leg rest to improve positioning support for each individual that uses the bath chair. These features ensure proper positioning for even those with more severe physical involvement to be transferred directly from bed to bath chair.

The shower chair is small enough to roll through most standard doorways, making it easy to go from room to room with little effort.With its standard features, the small Elite™ bath transfer system is designed to offer optimal positioning support for children with mild to moderate levels of physical disabilities. Optional accessories can be added to increase support at the trunk, head, and lower body for children with more severe levels of physical involvement, too. The maximum weight capacity is 200 lbs. (91 kg). The small size is recommended for children up to 80” (200 cm) tall.


Have a wonderful week!

TerriV~For RettGirl

Monday, May 9, 2011


Good Day RettGirls!

This week at we are featuring Crocs! Why Crocs you ask? Because they absolutely are one of the best shoes for SMO's and AFO's. Without the special needs, adaptive pricing we all know and love! You can, of course find these in our Product Reviews under Clothing/Shoes.

We came by this by way of our daughter's Orthotic Specialist. A few fittings ago she was showing us the catalog of shoes that are suggested for AFO's and telling us about the size difference when she looked down at my Crocs. She kind of nudged me and said, "You know, I think those are the best things to wear over braces."

I gave her that confused Chiwawa head tilt. "What?"

She then explained how the shoes mold over the brace for a snug fit without being tight or causing pressure sores. She even told us that between sizes we can just take a hair dryer to the inside of them for about 30 seconds and stretch them a bit more when needed.

This year when it FINALLY quit snowing I was super excited to put my own daughter's Crocs back on. Her pressure sores on the inside and outside ankle bone were better the first day and gone within a week.

I do recommend consulting with your orthotist/therapist first. If they agree for your daughter's situation, then it's best to take your child with you and try the Crocs out with the braces on. You will need to go up 2-3 sizes from her actual without-brace shoe size. Keep in mind that these shoes are going to have a bit more bounce, so if she is ambulatory it may take her a bit to get her feet back under her. It took my girl a few minutes and she is very wobbly.

Have a great week everyone.

Happy shoe shopping!

Terri V~For RettGirl

Sunday, May 1, 2011

Very Special Camps

Good Day RettGirls!

With summer almost upon us we wanted to make sure all of you know about a website called Very Special Camps. You can find this at in our Product Reviews under Travel/Camps

I have checked out this site and am thrilled at all the information they have here about camps that are just for kids like ours and their families!

We have been invited to several camps over the last few years and I have always been leery. I'm just a tad over protective as I'm sure most of you are!

I do know 3 families personally that go to camps listed on this site and they always talk about how incredible they are.

At this website you can find camps that deal with specific needs or specialized therapies.

From their website:

AD/HD Camps
Cancer / Oncology
Cerebral Palsy
Cognitive Disabilities
Crohn's Disease
Cystic Fibrosis
Developmental Disabilities
Eating Disorders
Enuresis (Bedwetting)
Deaf and Hard Of Hearing
Heart Disease
Learning Disabilities
Leukemia Camps
Multiple Sclerosis
Muscular Dystrophy
Physical Disabilities
Social Skills
Speech Impairments
Spina Bifida
Substance Abuse
Tourettes Syndrome
Vision Impairments

You can also search by state:

Alabama (3)
Arizona (2)
Arkansas (1)
California (17)
Colorado (8)
Connecticut (3)
Delaware (1)
Georgia (10)
Florida (7)
Idaho (2)
Iowa (2)
Illinois (2)
Indiana (2)
Kentucky (1)
Louisiana (2)
Maine (3)
Maryland (5)
Massachusetts (10)
Michigan (12)
Minnesota (10)
Missouri (1)
Nevada (1)
New-Hampshire (3)
New-Jersey (10)
New-Mexico (2)
New-York (19)
North-Carolina (8)
Ohio (7)
Oregon (6)
Pennsylvania (14)
South-Carolina (2)
Tennessee (2)
Texas (9)
Utah (4)
Virginia (6)
Vermont (2)
Washington (6)
Wisconsin (11)
Wyoming (1)
British-Columbia (4)
Ontario (6)
Washington-DC (1)

The first thing I did tonight was go to my state and and was thrilled to see all they offer so close to home for the whole family.

I found that most have 2 staff for every 3 campers. And many have many great therapies available that include:

Sensory Rooms
Physical Therapy
Occupational Therapy
Music Therapy
Animal Therapy

As well as nursing, lifts,and total accessibility to all buildings and vehicles.

Not all camps will be the same or have the same features or activities. Please do your own research and checks on each camp you are looking into.

Good luck to all of you considering sending or taking your girls to a camp this year. If you are thrilled with a camp ... as always, please let us know so we can share your recommendation!

Good luck!

Terri V~For RettGirl