Easter!

It's time to fill Easter baskets again!  Don't worry, we've got LOTS of ideas for you!  And for an added bonus we've got some great new gluten free recipes for your Easter Brunch!

Easter Basket Goodies:

• Check out the Natural Candy Store where you can get all sorts of candy for any type of allergy, all with nothing artificial!  It's not "healthy" but everyone deserves a treat!   

•  Vitacost is also a great website to check out for healthier, allergy-friendly snacks that you can use to fill up those Easter baskets as well.   

•  Adaptive toys are always a hit, check out this Spinning Art or this great Remote Control Color Bug that your Rett Girl can use hand over hand. 

•  What about a theme basket?  Is your Rett Girl on an adaptive baseball team?  What about a mit and bat?  Does your Rett Girl ride horses?  What about filling her basket with all things horses and by a special helmet that she can take to therapy?  Dress up themed baskets and movie themed baskets would also be fun!

•  What about trying something new?  Has your Rett Girl ever been fishing?  If not maybe this spring/ summer is the time to take her.  Fill her basket with a cute fishing pole, tackle box and a card telling her she gets her very own fishing trip.  Or what if this is the year for her very first sleep over - either with a friend, a sibling, a special aunt or mom and dad!  You could fill her basket with new PJs, a movie, snacks, slippers, maybe even a sleeping bag or a blanket and a card telling her she has won a slumber party!

•  What Rett Girl doesn't love her ipad?  What about filling her basket with itunes gift cards, a switchamajig so she can use a switch with her ipad, and a switch or a special pillow/holder for her ipad like this Peeramid. 

•  Find a ton more toy ideas at our Rett Girl toy pages.

FUN BASKET PROJECT:  Grow REAL grass in your baskets this year! It you buy wheat-grass seeds, they only take about 5 days to grow a few inches, so you have plenty of time!


Now for the Brunch!  

• Gluten free Banana Bread or muffins:  These are so yummy you'll never believe there's only 1/4 cup of sugar in the whole recipe!
  
• Deviled Quac Eggs:  The substitute of avocado for the mayo gives them an extra nutritional kick!
  



• Breakfast Muffins:  These are so easy to make, kids love them and they're completely customizable, you can use every one's favorite add ins!  

• Raspberry and Coconut Cream Tart: Don't forget dessert!  This is gluten and dairy free AND no refined sugars!  Delish!

Happy Easter Everyone!

Taking Care of the Caregiver

Valentine's Day is right around the corner. Be sure to add a little love for yourself in with all the hugs and kisses and teddy bears and candy you will be giving out! A little love in the form of CARING FOR YOURSELF.  It's something that we "younger" mothers don't want to think about, but something that our more experienced Rett moms warn us about.  Our daughters, as they grow, don't get any lighter.

We are constantly worried about keeping weight on our girls, wanting them to be full and healthy and strong - a wonderful goal - but what lingers in the back of all of our minds is "how much longer will I be able to carry her?"

This question is scary on two levels because it affects two people.  Many of us are not as worried with our own discomfort, pain and health as we are our daughters.  It goes without saying our Rett Girls and ALL our children come before us, it's in our nature.  But, what happens as they grow?  This is why we MUST make time for ourselves, recharging, regrouping, reorganizing and keeping our own bodies strong and healthy.

How do we find the time?
With so much on our plates already how do we even begin to find the time to exercise?  It starts with a mind set.  We all find the time to eat each day (although some days we're so busy we could easily miss a meal and not even realize it).  We all find the time to brush our teeth and to shower.  The key to finding time to exercise is to make it a priority.  Something that is not optional, but a daily necessity.


Where do we start?
Most of us are masters of multitasking. How about doing some stretches in the bathroom while you have a child soaking in the tub? Or while you are standing at the stove cooking, you can stand on your tip toes! Or how about instead of walking across a room, do lunges from one end to the other? Even just cranking up the tunes and dancing a little is a great start!


If you have never exercised before a great place to start is with stretches.  Stretching keeps your muscles loose, and loose muscles are less likely to get strained. Some gyms even have stretch classes which are a great way to get strong.

If respite care is an issue and there is no way that you are able to leave the house you can always invest in a few exercise videos - we really like this series because it's broken up into 10-minute increments, there is no equipment needed although you could use small hand weights to make it more challenging, and it's very low impact.  If you have a bit more to invest you can look into a treadmill.  Or you can just lace up your shoes and head outside for a nice brisk walk or jog, you can even take your Rett Girl with you - the fresh air will be therapeutic for both of you.

What muscles should we focus on for lifting?
After you've made the commitment to exercise one of the most important muscle groups you want to focus on is your "core."  Most of us are familiar with core muscles - not because of us - but because our girls work extensively on their core during physical therapy.  Our core muscle group is the same - we need to keep our lower back, obliques (the sides of your waist) and abdominal muscles very strong, this is how we protect our backs when lifting our girls.

What else is important?
Other things to keep in mind when lifting is to lift with your legs and not your back.  We hear this all the time but what exactly does it mean?  Well, first, get your Rett Girl into a good position for lifting.  That means if she is able to sit up on her own get her to sitting, bend down keeping your head and neck aligned with your back. Always bend at your knees (rather than bending at your waist) to grab hold of her and pick her up. The muscles in your quadriceps (thighs) are typically much stronger than the ones in your back and are much less likely to become strained.

For more tips on lifting safely click here

Lets not forget emotional support:
Don't forget to take time for yourself.  When you take a break and recharge you come back fresh - it's a benefit to everyone.  Also check out the Caregiver Survival Network for resources, news, blogs, tips, ideas and connecting with other caregivers who understand the demands we face.

We LOVE our Rett Girls but we also want to see their caregivers as strong and healthy as possible.

If you have a great tip please comment below and share it with us!  We're all in this together!

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!!!