Increasing Communication at Home

Many of our Rett Girls have great teams set up in their school settings, and maybe even private therapy where they are learning communication - whether it be with low or high tech eye gaze, PECS, PODD, iPad, switches, etc. If you're just starting out or even if you're a seasoned veteran teaching communication to a non-verbal person can seem a bit daunting.  Sometimes it is so overwhelming that we put it off, even when a device/style is found for our Rett Girls, we can sometimes unknowingly shy away from it because it seems to be too much or too hard or too time consuming.  

Well we're here to show you some very easy, quick and sometimes even fun tips and products to increase communication at home.  The more you practice communicating with your Rett Girl, the better and faster BOTH of you will get at it.  Don't worry about being perfect or using the exact wording (I know we've all seen SLP's with "scripts") or even using the same symbols and pictures each and every time, just relax and make it fun, not forced.

DIY Eye Gaze Flip Frame:  This is a great flip frame you can make right at home.  You can have different pages for different things - for instance one for snacks, one for activities and one for needs.  Don't spend too much time putting this together because it's easy to over think things and then procrastinate.  You can use boardmaker or other symbols - ask your Rett Girl's school if they could print you some extra ones if you don't have a program, or check out this website with FREE symbols.  You can also just take pictures of objects, food, etc. and print them off on your own printer.  It doesn't have to be fancy to be functional.  If you don't have the time to do this on your own you can also buy them HERE.

Communication During Bath Time:  Bath time is a great time to work on communication - multitasking!!  This is another DIY project, just get a kneeling pad from the dollar store, attach a few pictures to it that have to do with bath time and wrap it in packaging tape to waterproof it.  There you have it, instant communication in the bath.  Let your Rett Girl be in charge of the bubbles, what gets washed first - her hair or her feet - and even the temperature of the water.  Be creative, ask her questions and let her take some control.  The more she's listened to, the more she will want to communicate and the easier the process will become.

Yes/NO:  A great place for starting communication is with yes/no questions.  Check out this link that explains how to use personal talkers to teach and reinforce nodding for yes and shaking her head for no.  If your Rett Girl is not able to shake her head just yet how about just printing off a symbol for yes and one for no.  Always make sure to put the yes and the no on the same side each time, your Rett Girl can eye gaze to the picture or if she is able she can head point or even touch it.  The better she gets at this you can take the pictures away and she will learn to just look, head point or reach right for yes and  left for no.

Communication Flip Books:  Rett University has partnered with Susan Norwell to bring you her popular Communication Flip Books. The books have been professionally printed on durable Mohawk Performance Polyester plastic material that won’t tear, is weather resistant and environmentally friendly; Giving the users a durable set of communication books that they can take with them anywhere. All of the Flip Books use a technique called Partner-Assisted Scan (PAS). As the communication partner, you will say the options in each section while pointing to them. Then repeat with pauses between options to wait for possible “yes” response.  You can choose from a 4- grid communication book, uppercase letters, lowercase letters, core words or buy the full set!  

Remember, you don't have to have a fancy computer to communicate, you just need to think of ways to incorporate communicating throughout her day!  If you have any communication ideas that you use at home please let us know about them so we can share!

New Year, New School Ideas!

The New Year is a great time to make resolutions, turn over a new leaf, and take a fresh look at your Rett Girl's school situation.  Bring out that IEP, check out those goals - make new ones if needed and update goals that have been met.  Remember, you, as the parent, can call an IEP meeting whenever you feel one is needed.  Maybe all is well with your Rett Girl's IEP, but you are just looking for some fresh ideas. Well, we can help with that!  Here are some resources you may not know about

Brain Pop and Brain Pop Jr.

This is a fantastic website and app that brings an animated curriculum to students at all levels.  It meets Common Core Standards and offers both an introduction to new topics as well as a more in depth look into more advanced concepts.  Brain Pop Jr. is perfect for preK through 3rd. grade learners where as Brain Pop is for grade 4 and up.  Brain Pop Jr. has easy to understand, animated short films that are perfect for explaining different concepts and the Brain Pop Educators and Parents Guide allows you or your Rett Girls teacher to further explain and teach the material.  This website and/or app can be used at home and at school.

Accessible Books by Bookshare:

Bookshare is an online library of books that was started to allow individuals with print disabilities the same access to books as the general population.  Members of Bookshare are able to download books, newspapers, and text books and then read them using assistive technology.  In order to utilize bookshare you must have a qualifying diagnosis.  Our Rett Girls qualify because more can't hold a book or turn a page.

Check with your Rett Girl's school to see if they already have a membership and can add your Rett Girl to it so she is able to access this awesome resource.  If your school does not have a membership, is not willing to get one or if you are home schooling your Rett Girl, Bookshare has received a grant and is now able to offer qualifying students in K-12 grade an individual membership free of charge.

Eye Gaze:

Weather you are thinking of starting eye gaze communication with your Rett Girl in this new year or if she has been using it for awhile and are looking for more ways to incorporate it at school and home we have lots of resources we can share with you!

• PECS Starter Book: If you're short on time and resources this is a great book to snag.  It can be customized with symbols that you think are important for your Rett Girl and comes fully assembled and ready to use.  It's great as a low tech way of keeping communication consistent both at home, school and around town.  
• DIY Eye Gaze Flip Frame:  If you've got a bit more time and are able to print your own symbols this is a great way to make your own Flip Frame.  You can make several to again, make communication consistent throughout your Rett Girls day.  If you like this flip frame but don't have the time to make it on your own you can also buy it HERE.  

Apple iPad:  

Did your Rett Girl get a new iPad this Holiday season and you're wondering what apps to get and how to incorporate it into school?  Check out all of our iPad app and accessory recommendations HERE.  For more information you can go HERE for information from the "Appy Tyme" lecture given at the 2012 Rett World Congress by Susan Norwell, Judy Lariviere and Linda Burkhart.  

Happy New Year to all of our Rett Girls (and Boys!) and to all of our families.  We hope 2013 brings all of us health and happiness!  

Tis the Season To Help a Special Needs Family

School is out! While that can mean some more zzzz's in the morning or special travel plans, it can also mean a more stressful time for families with special needs children. Without the routine and support of school, it can be a looooong break. Check out our list of ways to help so you can put a little sparkle in the life of a family you know!

Things YOU can do to help out someone with special needs!

1. Smile and say hello.
2. Take them for a walk. Pushing a wheelchair can be fun!
3. Visit with your pet. Oh the joy a wiggly, warm ball of love can bring to someone who is confined to their wheelchair.
4. Make something for them. A drawing, a paper flower, a pretty button to wear. Show your friendship with a special homemade item.
5. Offer to read books, help with a craft, help the parents.
6. Dance! Visit with your favorite music and have fun “dancing!” Even if you can just hold their hand and move to the beat! Bring a few fun scarves with you!
7. Invite a family with a special needs child to a church function. Offer to help with the child so the parents can talk and enjoy their time. Many families do not get out much because it can be very difficult to manage all by themselves.
8. Have a picnic! You will have to know what special diets the person is on and learn how to make some of the special foods. But an afternoon with a few families at a park is a wonderful time to be together.
9. Bring your special friend to a school event or game! Having kids their own age meet them at an event really helps.
10. Blow bubbles. This is a fun outdoor activity, especially with our Rett girls!
11. Find a park with a handicapped swing. Meet up at the park and push her on the swing.
12. Help a family out. Offer to help with yard work, cleaning out the garage, etc.
13. Be a grocery shopping buddy! If you are too young to babysit, you can still go with the family and help in the store. The extra pair of hands to push a cart or entertain a baby sibling is a big help. You can imagine it would be hard for a mom to push a cart and a wheelchair at the same time!
14. Help out at a doctor’s appointment. Go with the family to the appointment. You can stay in the waiting room with your special friend so the parents can speak with the doctor without distractions.
15. Car wash! (For those of you in warm weather!) This is a fun activity you can do right in the driveway on a warm sunny day. Help your friend squirt the water, dip her hands in bucket of suds, sing some songs!
16. Beauty time! Get together with your friend and brush her hair. Put in all kinds of bows. Do your hair too! Sit in front of a mirror and pose and make faces. Take a picture of the two of you that you both will cherish forever!
17. Offer to babysit. Even if it is just so the parents can go for a walk.
18. Make flash cards and other helpful items. Talk with the family about what kinds of things they use to communicate with their daughter. Many use flash cards and other homemade items that are time
consuming to make. You could be a very big help with this!
19. Make dinner for a family with a special needs child.
20. Play an instrument? Visit with your guitar and let her strum. Or just bring your voice and sing!



Have more ideas to share? Share them below in the comments section!

Holiday Gift Ideas for 2012

KIMOCHIS

 

Check out our 4th Annual Holiday list of gift ideas your Rett Girl might love!

To view items, photos and links to purchase, click here.

Piggy Paint
Hearing Protector Earmuffs
Stompeez Slippers
Unclie Milton Shoe Lights
Lalaloopsy Doll
American Girl Doll Wheelchair
Anywhere Chair
Playing Card Holder
Color-Changing Speakers
Light Up Slinky
Fun Knee High Socks
Wind SPinner
Disney Electronic Reader
iPod Shuffle
Spin Art Machine
Owl Hat
Orbeez Mood Lamp
Gigglator
Kimochis Feeling Toys
Laugh and Learn Apptivity Monkey

There's a Chill in the Air!

Yep, we can feel it, it's starting to get colder!  And for those of us living in colder climates we know how bitter the winters can be.  Don't worry, Rett Girl is here to give you some ideas in keeping your girls nice and toasty even through the winter months.  

Slippers
Lets start with the most logical place, our Rett Girls' ice cold feet.  Because many girls with Rett Syndrome have poor circulation their feet and even their legs can get very cold and even look blue or purple so it's very important that we do everything we can to keep them warm and comfortable.  While you are in the house check out these great Padraig Slippers!  They're made of wool and have leather on the bottom so they have a bit of a grip on floors.  Or, what about these cute Stompeez that are not only warm but may also be motivating.

Boots
When you're venturing out of the house it's even more important to keep those feet warm and toasty.  The EMU Australian Boot is one of the warmest boots on the market, and they are tall so they keep legs warm too.  They are made of suede and sheepskin so they are super comfy.  Or, how about these fuzzy fleece boots that can fit over AFO's.

Coats
If you are heading out for a quick trip and getting into a heated car this poncho may be a good option.  It has a hood so it will keep your Rett Girl warm but certainly not warm enough to be outside for any period of time.  Here is another link to ponchos made for girls in wheelchairs. It's especially nice for our girls that use elbow immobilizers.  For a little more time out in the cold try this ZeroXposur Skye Snowboard Jacket. This jacket is awesome, super warm and even has an elastic band where fingers go through to keep gloves and mittens on!

Mittens
It can be really hard to get a glove or mitten on our girls' hands -- and really hard to keep it there! Try these mittens from Adaptations by Adrian! They have a style that is waterproof for our girls who like to chew on their gloves!

Extras
Remember when your girl was an infant and those wonderful buntings kept her warm in her infant carrier?  Guess what, they make them for big kids too!!  Super warm and snugly these great buntings have slits in the back that buckles and seat belts can go through and fit perfectly in oversized strollers or wheelchairs.

Don't forget the heated blanket!  We have 2 of these at our home and one at Grammy's house.  Heated blankets are perfect for warming up sheets and blankets so your Rett Girl doesn't get into a cold bed, or for warming up PJ's after the bath or just for snuggling up and watching a movie with.  A word of caution with heated blankets though, always make sure your Rett Girl is not over heating and never leave a heated blanket on your Rett Girl unattended (never leave on through the night).

We hope we've given you a few ideas for keeping your Rett Girl warm this winter, now it's your turn to share with us - what's your favorite cold weather product?

ps - these are also some pretty great Holiday gift ideas!!!

The Benefits of a Whole Body Vibration Platform

A Whole Body Vibration (WBV) Platform is a piece of equipment with a motor that brings vibrations to the entire body rather than just a single body part.

CAUTION: As with all exercise we need to make sure our girls are safe, so talk with her doctor and physical therapists to make sure your Rett Girl is strong enough for WBV therapy.


Vibration therapy has been used for thousands of years but has become more mainstreamed since 2001 when NASA started using it to combat muscle atrophy and loss of bone mass to astronauts when they are away from the pull of Earth's atmosphere.  Since then, hundreds of studies have come out about the benefits of bone health and muscle strength, especially in seasoned athletes that have used the platform to increase muscle strength in a short amount of time and increasing bone density in the elderly population and others who are prone to osteoporosis.

What benefits have been seen with the WBV platform?

• increased muscle strength
• increased bone density
• increased flexibility
• increased circulation
• pain reduction
• increased lymphatic drain
• improved gait
• decreased spactisity

And the list goes on.

The benefits of WBV have been pretty clearly researched in both the elderly population and recently the research has stretched over to the pediatric population as well.  Whats even more promising is that there is currently a study underway to see how the WBV platform can help children with mitochondrial respiratory chain disorder and Rett Syndrome!  however, don't rush out and buy one until you have all the facts about them and how they can benefit your Rett Girl.

PLEASE NOTE: First, you need to choose a machine that is built for physical therapy rather than one that is built for athletic endurance.  There IS a difference and you need to know about it because buying the wrong machine or using the right machine the wrong way can have detrimental effects on your Rett Girl.

A WBV platform used for therapy has a much lower frequency then those used for athletic performance. Frequency is measured in Hz, look for machines that are less than 30 Hz.  The frequency is directly related to muscle contractions so a frequency of 20 Hz means that your muscles will contract 20 times/ second while you are on the machine.  Most of the research that has been done and shows favorable results uses platforms with lower frequencies, so faster is not necessarily better.  You can actually have muscle damage at Hz that are in the 70's.

The next thing you need to look for is the direction of the vibration.  Some go up and down some go side to side.  The machines that have been shown to improve gait and assist in walking have had an oscillating motion.  An oscillating motion is when the platform moves up and down one side at a time mimicking a walking motion.

Amplitude refers to how far the platform moves when it's vibrating and is measured in millimeters.  Look for machines with an amp of 10mm or less.  The problem here is that many machines don't list their amplitude.

And finally there is a proper amount of time to be on the vibration platform to get the maximum results and stay safe.  Just like frequency, more is not better!  This is a good thing because you don't have to spend a lot of time to get the benefits.  Most of the research has shown positive effects with just 10 minutes a day everyday.  Make sure to start out very slow, just a minute or two per day to start out.  Remember, this is exercise so don't over do it.  Too much time on the vibration platform can cause muscle fatigue and weakness.  If 10 minutes is too much for your Rett Girl at one time you can do 3 sets of 3 minutes each and still get the benefits.

There are LOTS of machines out there and the cost varies from $100 to more than $3,000 so you have to do your homework.  We have found 1 machine that looks like it fits the bill, check it out HERE. This machine has 20 different levels, the low level offers 16.5 Hz frequency, has 0-10 mm amp, gives an oscillating vibration and costs $299. There are many other options out there as well!

Contraindications
People with seizure disorders need to be very cautious with WBV platforms because they could trigger seizures.  This doesn't happen for everyone but you may want to try one out before you buy it to see if there is a trigger and definitely talk with your Rett Girl's neurologist to see if it's safe for her.  Some have also experienced lower back pain while on the vibration platform, watch your Rett Girl closely to make sure she is not in any pain while on the machine.  You may also want to talk with your Rett Girls physical medicine and rehab doctor,  her orthitist and/or her orthopedic surgeon to make sure her body is strong enough for this kind of exercise

As with all exercise we need to make sure our girls are safe so talk with her doctor and physical therapists to make sure your Rett Girl is strong enough for WBV therapy.

References:

1. http://www.comfitsolutions.com/yahoo_site_admin/assets/docs/WBV_-_Immobilized_Children.13002052.pdf
2. http://www.orthometrix.net/downloads/article-35.pdf
3. http://www.rehab.research.va.gov/jour/09/46/4/totosy_de_zepetnek.html
4. http://www.chiroeco.com/chiropractic/news/12466/1688/aguide-to-whole-body-vibration-therapy/?skeyword=woggon
5. http://www.anzctr.org.au/ACTRN12609000315213.aspx

Nutrient-Dense Gluten-Free Snacks

Many of our Rett Girls struggle with weight gain.  It's difficult to keep weight on a kiddo who has trouble chewing and swallowing and spends so much time and energy in school and therapy and just trying to make her body cooperate.  There are only so many hours in a day, and we don't really want every spare moment to be spent at the table trying get some extra calories in. We also don't want those extra calories to be empty, rather we want them to assist in building strong, lean muscle.  A great place to start is with snacks!


PowerBalls:  Click HERE for the recipe.  The peanut butter adds lots of protein and fat, the flaxseed is great for adding extra fat, calories and fiber, the dried fruit gives not only sweetness but also fiber and antioxidants.  These are great for the whole family and are not only an easy, portable snack but a great quick breakfast, too!

High Calorie Shake:  Click HERE for the recipe.  Hemp Milk is dairy free and is high in fat (6 grams per 1 cup!), protein and is fortified with Vitamin D and calcium.

Trail Mix:  Skip the preservatives and high price tag and make some yourself with almonds or walnuts, dark chocolate, and dried fruits (if dried fruits are too difficult for your Rett Girl to chew try freeze dried fruits, they are a bit crunchy and melt in your mouth - they will "soak up" moisture from other foods though so if you are using in trail mix eat it as you make it, don't store it).

Greek Yogurt:  Make sure to get the full fat Greek yogurt, some are low calorie and low fat but that's not what we are looking for with our Rett Girls, they get the "real deal!"

Whole Milk Cottage Cheese:  High in protein and fat.

Almonds:  These nuts are packed with Vitamin E, B-vitamins, calcium, magnesium, potassium and zinc not to mention high in good fats and protein.  A handful of almonds is great but if your Rett Girl is not able to chew raw almonds try substitute almond flour for whole wheat flour or rice flour in your recipes.  You may need to add some leavening agent (almond flour is heavier) and a bonus is you may also find that you can reduce some of the sweetener since almonds have a naturally sweet flavor.

Homemade Egg Salad:  Click HERE for the recipe.  Eggs are a great source of protein, opt for free range, organic eggs which are typically higher in nutrients or better yet, try to get some eggs from your local farmers market.

Avocados:  high in fiber and good fats avocados are great alone or mash them up and use them as a dip for veggies, gluten free crackers or corn chips.

Homemade Potato Chips:  So easy and they taste GREAT!  Just slice up really thin potatoes or sweet potatoes, lay in a single layer on a cookie sheet and drizzle with olive oil and sea salt then bake until crispy!  Try these dripped in smashed avocados - YUMMY!

Hopefully we gave you some new and easy ways to add some good calories to your Rett Girl's diet.  Please remember to do a reality check when trying new foods - Rett Girls have very sensitive GI systems, start new foods VERY slowly.  All Rett Girls have different chewing and swallowing abilities, so be extra cautious with foods that are choking hazards like dried fruit and nuts, if your Rett Girl has difficulties with these don't push it.  You may want to try putting the ingredients into a blender to make them easier to digest.

If you have any nutrient dense gluten free recipes you want to share we would love for you to leave us a comment!