Wednesday, May 30, 2012

Shedding Some Light on Sunscreen

Summer is here! BIG QUESTION on our minds: How do we protect our girls from the sun without harming them in the process? There is actually a lot of controversy out there about sunscreen.  We hear it's good, essential in fact, but then we hear about toxic ingredients and that it's imperative that we get Vitamin D from the sun.  So what are we supposed to believe/do?    

First, we'll give you a little rundown on the topic.
Second, we will recommend a great nontoxic sunscreen!

Take a look at the different types of ultraviolet light, UVA and UVB.  

UVA waves are fairly constant during the day and throughout the year.  They can pass through a cloudy day and penetrate your skin deeply causing free radicals and painful sunburn.  

UVB waves are low in the morning and evening and peak at midday.  They are the waves that are responsible for helping your skin produce Vitamin D.  

Experts say the best way to get your Vitamin D but stay safe is to have limited sun exposure during the strong mid day sun everyday.  This means about 10 to 20 minutes of strong sunlight in order for your skin to take in the necessary UV rays to produce Vitamin D.  After your 20 minutes in the sun stay in the shade for the rest of the day or cover your skin with clothes.  This is the ideal for the most beneficial and safe sun exposure but is not always possible.  

Busy families are out at the beach all day or playing in the pool or out at baseball games - places where there may not be ample shade in the ideal places and most of us don't want to be covered from head to toe in clothing on a hot day.  So almost all of us need protection from sunscreens from time to time.  So how do you pick a safe one?

First you need one that protects again UVA and UVB rays.  UVB rays are "good" but only in moderation, they can also cause free radicals with excess exposure.

There are two kinds of sunscreens: chemical and physical. Chemical sunscreens ABSORB the UV radiation. Physical ones block UVA/UVB radiation by reflecting the rays/physically blocking them.

YIKES! Second, there is a LONG list of chemicals commonly found in the "chemical" sunscreens that can be toxic - check your sunscreen bottles and if they contain any of these chemicals you might want to consider tossing them:

retinyl palmiate
Para amino benzoic acid
Octyl salicyclate
Menthyl anthranilate
Trolamine salicyclate

Third, take a look at the other kind of sunscreen: PHYSICAL sunscreen. This is a safer kind of sunscreen that is not made from chemicals but rather minerals.  Common minerals are Zinc Oxide and Titanium Dioxide.  These minerals are great for keeping out the suns harmful rays but may be harmful to you if they are broken down into very small particles called nanoparticles.  Nanoparticles are particles so small that they can actually penetrate the skin and get into the body where they can attack DNA and cause all sorts of damage.  Sunscreen manufacturers started using nanoparticles in their products because it helped the sunscreen to rub in quicker (think spray sunscreens) and avoided that white residue.  Sunscreens without nanoparticles may take an extra minute or 2 to rub in but it's well worth it to avoid the toxicity.  

OK, so just where do we find sunscreen that fits all of these requirements?  

We're so glad you asked!  Let us introduce you to Jenn Miller, Sales Consultant for Ava Anderson Non Toxic, a manufacturer of truly NON TOXIC and GLUTEN FREE personal care products that are not only safe but incredibly effective.  J

Here's what you need to do to order:  
Please visit  

There are a bunch of other products on her site to check out too! If you have any questions or would like additional info on Ava Anderson Non Toxic or their products please contact Jenn at

We want to keep all of our Rett Girls safe this summer! Whether or not you choose to order from Ava Anderson Non Toxic, please keep in mind all of the information we shared here and have a safe and healthy summer!  

Tuesday, May 15, 2012

Everything iPad - Cases, Mounts, Holders, Switch Control, Apps

So for the past couple years Apple has taken the special needs community on an exciting ride with the iPad. An amazing tool that many of our special needs kiddos can use to play age appropriate games and learn new concepts. Many have even used it to find a voice for the first time.

This technology is amazing but there are LOTS of questions involved.  The first one being "Could MY Rett girl benefit from an iPad"?  A fantastic question since they aren't cheap and all kids are different.  This book may be a great place to start if you are here wondering about investing in the iPad.  It is $24.50 for the book or $9.99 for the Kindle or Nook version.
Once you decide an iPad is right for your Rett Girl you need to protect your investment with a great case. One that can be dropped because we all know it will be, one that has a screen protector and can with stand the occasional drool or spill.  A great choice is the GumDrop Case or The Big Grip.  Or another option that may be more economical is the Tabtoob

After finding the right case you now need a stand for your iPad.  Many of our Rett girls use them on their laps but for some that isn't possible. For watching a show, movie or reading a book, you definitely need a different angle.  Our suggestions are the Peeramid which can be used on a table, on a lap (it's nice and soft) or on the ground and can also double as a book stand.

There are also adjustable tablet holders, but before you get an adjustable tablet holder you first need an adjustable tablet mount.  Yes, confusing but RJ Cooper offers some great ones.  Head on over HERE for a mount and then HERE for the adjustable holder.  One thing you want to keep in mind when choosing a mount or holder is weather on not you will be using a case with it - some can NOT be used with cases so double check. 

You can use your iPad as entertainment in the car with this great car mount

Lastly, you may want some accessories for your iPad.  There are lots of great things you can get that will optimize your iPad.  One is a switch interface so your Rett Girl can use a switch to activate the iPad.  There are a few interfaces you can choose from and there are only certain apps that are switch compatible - all the information you need about using switches with you iPad can be found HERE.

Another great accessory if your Rett girl is able to head track is a head pointer that is compatible with an iPad or any tablet for that matter. 

With the Switchamajig you can use the iPad’s touch screen to control anything that’s switch-adapted. It opens up new possibilities for including people with disabilities in more and more activities, from cooking to chemistry class.  The Switchamajig Controller can work with switch-adapted power outlets to control kitchen utensils or anything else.

So hopefully this gets you well on your way to getting some great benefits from you iPad but if you're still looking for more resources check out this article "10 Ways to Optimize Your iPad for Kids with Special Needs" and our blog post with great app recommendations for our Rett Girls.  

If you have a great product or app you use with your iPad please let us know so we can share with our Rett community! Email!

Monday, May 7, 2012

Poor Circulation in Rett Girls

Many of our Rett Girls have very cold hands and feet due to poor circulation.  Sometimes they can also look blue or purple.  The easy remedy for poor circulation is typically to get up and move around to get the blood flowing.  This can be difficult for our non-ambulatory and non-weight bearing girls but even if our girls are able to get up and move around many times it doesn't help because their poor circulation is usually due to a vasomotor disturbance that is difficult to treat.  

Google dictionary explains vasomotor this way:  "Denoting a region in the medulla of the brain (the vasomotor center) that regulates blood pressure by controlling reflex alterations in the heart rate and the diameter of the blood vessels, in response to stimuli from receptors in the circulatory system or from other parts of the brain".  

So what can we do as parents and caregivers to help our Rett Girls circulation and the pain that can sometimes come with it?

Keep them warm:  Poor circulation means cold feet, even in hotter weather, so keep them warm with socks and loose fitting shoes, boots (like UGG's) or slippers.  A heated blanket works well too but be sure to check her often so the blanket doesn't get too hot.

Circulation socks:  There are lots of circulation socks on the market for adults so if you have an older Rett Girl you can easily pick up circulation socks at your medical supply store.  As for our younger, smaller girls we have found these Nike compression socks typically used for sports.

Keep her feet elevated:  When your Rett Girl's feet are elevated it's much easier for the blood to get down to her feet and circulate back up.  In the car you can keep feet up with this great foot rest.  We have also heard that it works great when used with a booster seat attached to a chair.

Don't let her feet dangle:  When feet are dangling not only is it harder for the body to pump blood but typically the back of the leg is stressed and can further hinder circulation.  One of the places where feet dangle a lot is the bathroom.  If you don't have a potty seat with a foot rest check out this one (for very young girls - this one is small).  Or you can find a foot stool at a height that would keep your Rett Girl's knees at a 90 degree angle. 

Massage:  Massage works to speed circulation, you can even try this cream by Burts Bee's to stimulate the circulation even more.

We hope that these suggestions help in your Rett Girl's circulation.  If you have found any additional resources please share them with us.