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!

Not So Sweet

What is refined sugar?

Refined white sugar is almost 100% sucrose - a highly processed form of sugar beet or sugar cane plant extracts.  It contains no nutritional value (vitamins, minerals, proteins or fiber) and is sometimes called "empty calories" or just "junk food."  Sucrose can hide behind some different names, such as brown sugar, which is basically just white sugar with coloring added in.  Or "raw sugar" which makes you think you are consuming something more "natural" but is simply sucrose in larger crystals with a bit of molasses for color. Confectioners sugar is also just sucrose in a different form.  If you read food labels you may see sucrose listed as cane sugar, beet sugar, invert sugar, saccherose or turbinado.  

What does refined sugar do in your body? 

Consuming refined sugar causes your body to release insulin in excess amounts.  This release of insulin causes the body's blood sugar to drop, which is commonly known as hypoglycemia.  This hypoglycemia causes your body to secrete a simple amino acid called glutamate (a "messenger molecule" that tells a neuron to fire).  Calcium is then pulled from the body and enters the neuron to quickly clear the glutamate from the nerve cell.  Calcium must enter the neuron each time glutamate causes it to fire.  This prolonged calcium inside the cell can do damage and cause symptoms such as agitation, depression, anger, anxiety and panic attacks.  

Refined sugar contains no vitamins, minerals, proteins or fiber, therefore it must draw micronutrient stores out of the body in order to metabolize which in turn depletes the bodies stores of vital nutrients like calcium. Sugar has also been associated with inflammation in the body which can lead to disrupted immune systems, arthritis and cancer to only name a few.  Insulin is a hormone that regulates the bodies blood sugar as well synaptic functions in your brain.  When sugar is ingested regularly the body becomes insulin resistant which leads to Type 2 diabetes but it an also cause difficulty with the learning and memory functions in your brain.   

What does this mean for our Rett Girls?

Many of our Rett Girls are at risk for osteoporosis because of decreased mobility and, if they are prone to seizures, their antiepileptic drugs may also cause decreased bone density.  As stated above, when we ingest high levels of refined sugars our bodies release calcium, since about 99% of our calcium is in our bones it is a safe bet to assume that this calcium is being pulled out of our bones.  Once the calcium is used to clear the glutamate out of the nerve cell it doesn't go back into the bones it gets excreted in the urine.  Our Rett Girls are at such a high risk for osteoporosis because of their disease, eating refined sugars only increases this risk and the likelihood for decreased bone density.  

In addition, Researchers have discovered a direct link between refined sugar consumption and Brain Derived Neutropic Factor (BDNF).  BDNF is and important growth hormone in the bran that triggers new connections between neurons in the brain that are crucial for memory function.  Those who consume diets high in refined sugar have lower BDNF levels.  Our girls with Rett Syndrome are at a vast disadvantage since their BDNF levels are already lowered. 


Because many of our Rett Girls have difficulty with gaining weight we as parents and caregivers may try to "beef up" our girls by providing high calorie meals and snacks which may cause us to turn towards sugary foods.  In the process of trying to help our girls we may actually be harming them and causing their brains and bodies to work harder because of the excess sugar.  Instead try things like this high calorie, nutrient dense shake that will work to increase healthy weight gain without the refined sugars.  Another tip is to start adding olive oil for calories and fat. There are 14 grams of fat and 130 calories in just one tablespoon which mixes in well with things like unsweetened applesauce, rice, veggies, and mashed potatoes. Gotta have something sweet? Your best choice is raw honey.

Why You Should Think About Probiotics

What are Probiotics?

Probiotics are "live microorganisms (mainly bacteria) that offer a health benefit."  These microorganisms are either the same as or similar to the ones that naturally occur in our gut.  Probiotics are often referred to as the "good bacteria" as opposed to the germs that make us sick the "bad bacteria."  The most common types of these "good bacteria" are Lactobacilli and Bifidobacteria.

Where are Probiotics Found?

Probiotics can be found in some dairy products like yogurt and kefir that have active, live cultures, as well as in supplemental form such as powders, capsules, liquids and tablets.

What are Probiotics Used For?

Probiotics are used to promote a healthy gut flora.  The "good bacteria" in your gut can be depleted by processed foods, stress, illness, toxins, etc. and especially from antibiotics which kill ALL bacteria - the bad bacteria causing your sickness but also the good bacteria in your gut flora.  Probiotics have been used to aid in digestion and increase the absorption of nutrients from foods, as well as help with both constipation and diarrhea. Probiotics have also been used to treat certain diseases, anything from Irritable Bowel Syndrome, Crohns Disease and Colitis, diabetes, heart disease, depression, obesity, even the common cold and the list doesn't end there.  While researchers are still uncovering the health benefits of probiotics one thing is certain, 80% of your  immune system is located in your digestive system, so keeping it healthy certainly aids in preventing disease and increases your well being.

The Gut/Brain Link:

Our enteric nervous system (gut) and our central nervous system (brain) are actually connected through the vagus nerve which is the longest of all the cranial nerves.  This is our gut/brain connection.  It's because of this connection that we sometimes see neurological conditions, like autism, "cured" or improved.  Healing the gut has profound benefits to the brain which can be extremely beneficial to our Rett Girls.

How do I start my Rett Girl on Probiotics?

We strongly urge you to speak with your Rett Girl's GI specialist or pediatrician before starting any probiotics.  If she is cleared to start, we suggest starting extremely slowly, maybe with just 1/10th of a typical dose and increasing very slowly.  Your Rett Girl may experience GI discomfort, bloating, diarrhea or constipation if you move too quickly.  Eventually you may see benefits such as reduced screaming fits, more normal bowel movements, less need for laxatives, and hopefully an overall more comfortable girl.