Nuk Brush

Good Day RettGirls.

This week's feature at RettGirl.Org is the Nuk Brush. You can find this neat little item in our Product Reviews under Sensory.


I have had a Nuk Brush in the bathroom for Abby since her teeth started coming in. Recently, I have had several parents tell me that it is a great tool for oral stimulation. One even commented that it really helped their tube fed child learn to eat again.


Last week at Hippotherapy the Speech Pathologist that runs the place had me bring Abby in early so she could do some oral motor exercise with her. Abby has become quite the drooler lately.


The first thing she got out was this Nuk Brush set. She ran the round brush in a C pattern in her cheeks. She used the flat brush to go over her gums. When she put it on her tongue she immediately wrapped her mouth around it and sucked on it like a straw. I haven't been able to get her to use a straw for almost a year. In one session!


We took the set home and have been using it every day. In the last week we have gotten Abby to at least sip from a straw and eat whole jars of food instead of one bite. I didn't expect results that fast but I'm going with it.

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from the company website:

This brush is recommended by Speech Pathologists as well as feeding clinics to wake up the mouth before feeding.The Nuk™ brush massager is used for oral massage, oral stimulation and exploration. It stimulates lateral molar ridges, reduces oral hypersensitivity, and helps develop a tongue groove. The flexible, nubby texture offers valuable sensory input for the child’s mouth. Though this brush was designed initially for teething infants, it has made its way into therapeutic settings as an invaluable tool for sensory exploration. The nubby surface can hold tastes of liquid, purees or crumbs while it is used with supervision as a “spoon” for initial feedings. The NUK brush is approx. 5″ long. Use only under adult supervision.

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Good luck everyone!

http://rettgirl.org/2010/08/nuk-brush/




Terri V~For RettGirl

Chewlery!

Good Day all.

These awesome little sensory items are called "Chewlery." You can find them at RettGirl.org in our Product Reviews under Sensory.

I know some of you may have seen them on other children or have a few of your own. I wanted to let you know there is quite a selection out now and a great gift idea for that hard to buy for RettGirl. Sensory is such a big issue in our lives along with the dreaded teeth grinding (Eeek, even typing those 2 words made my ears tingle.)

As you can see there is a great selection of colors between From the pink and purple on the girl above to the yellow, blue and green.

This fabric elephant is my girl's favorite. We can get her to chew on this rather than the also Non-Toxic plastic coils that are a staple in some girls' homes.

I once visited a Mom who's daughter got an assorted case from her Grandparents every year for Christmas. Without them she is a constant grinder and sometimes biter.

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from the company website:

Chewable jewelry is a great way to keep kids from chewing on their clothes, while letting them work through their chewing tendencies. Its also great for oral-motor stimulating activities. Non toxic, colorful, plastic jewelry that "streeeetches".

For the fabric chewlery

Helps kids with difficulty handling sensory input
Absorbent, adorable, slightly stretchy neckwear that contains elastic
Low-pile terry cloth provides a natural comfort for the mouth
Bleachable, machine washable and dryable
Endorsed by therapists and moms

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If you are looking for that "something" that will help with those oral motor sensory tendencies. These come highly recommended!

Have a great week!

http://rettgirl.org/2009/08/chewlery/

Terri V~For RettGirl

Caroline's Cart

Woo Hoo look at that!

I don't know about you, OK I do. Pushing a wheelchair while pulling a cart is like maneuvering a semi around a sharp corner in the store. Even for girls that can walk they sometimes tire easily.

The cart above is called Caroline's Cart. There is a movement in the US to try to get these carts in stores for the special needs community. Once again thought up by a parent of a child with multiple special needs.

No longer will we have to strap our children into those red and blue 2 seaters that don't hold them up. No pushing a wheelchair,pulling a cart and using your other 6 arms to shop.


I have been a royal pain in a certain popular chains you know what because I complain every time I come into their stores and the big blues are sitting outside in the 100 degree heat. Or left out and covered in rain. The best I have been able to do is to get them to slap a couple of handicapped stickers on 3 of them and park them next to the scooters inside the store. They work in a quick pinch but my back aches after I have had to push that big thing with one hand while holding Abby up with the other.


Having her facing you makes everything so much easier. My daughter can't stand facing away from me if she is in own chair or the big ones at the big chains. I think there is a sensory issue with the florescent lights, all the people and all the different colors and noises. This way she can focus on you or what she has with her.

We have added Caroline's Cart to RettGirl in our Product Reviews under Mobility. This is not an item you can just purchase but they do have ideas on how to get them into the stores you shop in.

For more information please visit:http://carolinescart.com/

Happy Shopping,

Terri V ~For RettGirl

Britax Traveller Plus EL

Hello RettGirls!

This week at RettGirl we are featuring the Britax Traveller Plus EL car seat. You can find this incredible car seat in our Product Reviews under Positioning.

We have had this car seat in our van for about a year now and we are so glad we do! We had originally tried to purchase a different one at twice the price when the order taker on the phone had me take a look at this one online. She mentioned the comfort, durability and headrest over and over. I was sold, and it arrived within 2 weeks.

We call it "Abby's Lazy Boy." It is so soft and cushiony. With the headrest or wings, as they call them, we have not had one incident of head flopping. The only bad thing I can say about it is I am pulling a sleeping child out it every time we go to take her out of the van. That is not always a bad thing though. Sometimes when nothing else works to get her to sleep...into the van she goes. A drive or 2 around the block usually does the trick.

Is this car seat just what you've been looking for? Do you have one and want to share your review with us?

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From the company website:

Britax Traveller Plus – a forward-facing car seat specifically designed for children with special needs.

The Britax Traveller Plus car seat model meets USA standards (FMVSS 213) for safe and secured travel for your child in a vehicle.

•Forward-facing car seat for children 22 – 105 lbs. (10 – 47.6 kg)

•Appropriate for children with mild to severe disabilities

•“Thigh Depth" should be equal to or greater than the “Seat Depth" (within + or – 1 inch) to promote a proper seating position

The Britax Traveller Plus includes the following standard features:

•Height-adjustable Headrest

•Removable & Washable Fabric Cover

•5-Point Harness (extended lengths of 3" on the belt and the crotch strap)

•Foam Abductor

•Tether Strap – used with ALL configurations

•LATCH Strap – used for children between 22 and 48 lbs (10 kg & 21.7 kg)

•Recline Bar – installs the car seat at a 26° angle for children that need assistance maintaining head control

•Pad Kit to adjust the amount of support for your child

•Buckle Guard


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Need I say more? I haven't met a family that has one that doesn't absolutely rave about it!

Hope you all are have a wonderful week! Stay safe!

http://rettgirl.org/2011/08/britax-traveller-plus-el/


Terri V~For RettGirl

Stylin' in Cardboard?!

Good day Rett Girls! Today we have a guest blogger! Stefanie Gutierrez gives us the scoop on her daughter's new adapted chair....made from cardboard!

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After receiving Anna’s adaptive stroller and feeding system earlier this year, we were at a crossroads, as most of my fellow Rett-mama’s can relate to. We were thankful for the chair that would help keep Anna nice and straight and position her really well, but we were sad that she spent most of her days in it. Anna is non-ambulatory and can’t sit on her own.

So she had breakfast in it. Then her morning therapy sessions. Then her snack. Then lunch. Then dinner then….

What happened when she just wanted to watch television with her brother, Gabriel? When she just wanted to “read” a book with us or “color” on her iPad? If we weren’t able to hold her, she was in that blessed chair that we were all – including Anna – sick of.

We were looking around for a relaxing chair… A lounge chair of sorts that Anna could just relax in and she knew was just for her down time. I had heard bean bags were great options for some.

I kept thinking about when Gabe was three, and how he had this little red Ikea chair. Anna should have something like that, too, I thought.

Enter Adaptive Design. Dr. Sasha at the Rett Syndrome Clinic at Montefiore had suggested it at one of our prior appointments. After a quick phone call, we had a very informal get-together with Antoinette, one of the brains behind the project. It seems she can create anything you’d like out of any possible reusable material on the planet. We walked in and they had an entire showroom full of chairs of any kind – think rocking chairs to high chairs to booster chairs – all made out of 100% cardboard.

We explained to Antoinette the desire for this lounging chair we had in mind and she immediately grasped what we were going for. Within a week they had built a chair for Anna out of cardboard. It has a pummel to keep her positioned correctly and a Velcro wrap keeps her upright. A tray fits in the front. The cherry on top? A local artist who donates their time and talents to Adaptive Design painted the chair in colors of Anna’s choice and her favorites… Think purple, butterflies, flowers, ladybugs. It was delivered a few weeks later and it is her relaxing chair. Exactly what we wanted.

Take some time to check out their website: http://www.adaptivedesign.org/.

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Thank you for sharing Stefanie! If you would like to share something with all the Rett Girls out there, send me your story!

Terri V. for RettGirl

Our Marvelous Media Category!

Good Day RettGirls!

This week at RettGirl.org we are featuring our Media tab under our Product Reviews.

There is so much to find here that can help you and your girls. Teachers and caregivers have all used our media category to teach themselves a little more about our girls and what works for them.

What can you find here? Let's take a look.

Media

Books-We have online books, Children's Books, Education in Rett Syndrome books, Nutrition, Care and more ...

Music-Personalized CDs. GirlPower2Cure CD; controllers, RettComposers, devices ...

COOL ALERT! It's a large-button controller to control songs on an iPod!

Software-Free software sites, Recommendations, Sites for Teachers and Speech Pathologists ...

Video-Websites, Devices, Video suggestions, Educational videos, ASL ...

Websites-Disability resources, Government offices, Product resources, App reviews, Software sites, Free Educational Programs for the classroom sites, and much much more ...

We are always learning and growing for you here at RettGirl.org. If you have suggestions or anything to add to what you find at RettGirl, we would love to add and share with all of our families living with Rett Syndrome.

We hope you find something here that can help!

And please feel free to share with your schools. My daughter's teacher has RettGirl.org bookmarked and uses ideas from here for her entire classroom!


Have a great week,

Terri V-for RettGirl

Back to School!

Good Day Rett Girls!

With the new school year quickly approaching we want to remind everyone about our School Stuff category at RettGirl.org!

As the new year starts I know we are all anxious about new school, new teachers, aides and IEP's.

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 learns. You will find invaluable information on:

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

We have invaluable papers we urge you to go over with with your child's team.

Linda Burkhart's- Multimodal Communication Strategies for Children Who Have Rett Syndrome

RJ Cooper's-About "Girls with Rett Syndrome"


OTHER SECTIONS:

Communication

Websites

Sensory

Positioning

Care Notes

IEP Bank


Apple iPAD page with info and helpful apps


Eyegaze System Hub for sharing experiences/ideas with others who have the same device

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

Have a great day!

Terri V~For RettGirl