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

Rett Girl Kelly on her iPad
see more videos of Rett Girls on our Rett We Can! video channel

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.

CASES:
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.


HOLDERS/MOUNTS:
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. 

ACCESSORIES:
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 bridget@rettgirl.org!

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.

Arm Braces

Many of our Rett Girls use arm braces or elbow immobilizers.  Lately we have added a couple of new arm brace manufacturers, so we decided to do a post on what they're for and what the different manufacturers can offer.

Our Rett Girls use arm braces for several reasons:

• One of the most common reasons is hand mouthing.  Rett brings on repetitive hand movements, and for many of our girls that means mouthing hands continuously. This is not only distracting, but exposes our girls to many germs - especially while in school -  and can also cause skin breakdown from the constant wetness.

• Arm braces may also be worn for safety when our Rett Girls engage in self injurious or involuntary behavior.

• They may also be used in therapy to provide support or stability while doing therapy.

• Lastly they may also be used in place of an IV board when our Rett Girls are in the hospital.  In fact, the feedback we have heard from parents about using their own arm braces in place of IV boards has been great, they seem to offer our girls just a bit more comfort and a little more stability to keeping that arm straight with an IV in place.

We have heard from many Rett parents about arm braces and most experiences are positive.  Many tell us that they never wanted to limit their Rett Girls' movements, but once they did their girls were able to concentrate on other things and were not as distracted by their hand movements.  That being said ALL our girls are different so try it out if your Rett Girl is experiencing any of the above and see if it helps out.

We have several manufacturers listed on our site what makes them all the same is that none of them need a prescription, however without a script you pay completely out of pocket.  Several of them will bill an insurance company if you do decide to send in a script.  Each one offers something just a little bit different though:

armbraces.com:  Offers home made arm braces (among other things) that are custom made.  You give your Rett girls arm measurements and you choose the fabric.  You can even send in your own fabric to make them truly unique and custom.

The Bamboo Brace:  Uses 5 flexible and interchangeable "stays" that you can insert into the neoprene arm wrap so you can adjust to varying amounts of plasticity or instability.  These arm braces were developed by physical therapists and are perfect for therapy and weight bearing exercises.


Pedi Wrap:  Are arm braces that hold their position a little better and don't slide as much as the armbraces.com ones, however these are not custom, they come in set sizes and patterns.  You can call to ask for a specific type of pattern or color but you are limited to what they may have in stock.

Benik Hinged Elbow Support:  Is a bit more pricey but may be picked up by your insurance company with the proper paperwork.  This arm brace offers a custom fit and is adjustable so you can control your Rett Girl's range of motion.

Sleepy Cow Creations:  Has an arm brace much like the the Pedi Wrap only they are able to customize the size and the fabric.  They also have a very affordable price and for an additional charge they can make your girl a matching bib!

We hope that we have shed some light on different arm braces and the reasons for their use.  If your Rett Girl uses a different brand we would love to hear about them!  Send us a picture and give us a review here.

Bike Riding

Temperatures are starting to go up, days are getting longer, the sun is shinning and flowers are blooming! All signs of spring! What a wonderful time to get your Rett girl out and riding a bike while catching some Vitamin D!
Riding bikes is not only fun it also offers a huge list of benefits especially for our girls:

1. Cardiovascular health - like most aerobic exercise riding bikes works your heart muscle, keeping it healthy and strong

2. Increased strength - It goes without saying that pushing the peddles of a bike can help strengthen your legs but for our girls who are not able to push the peddles on their own even just sitting upright and balancing on the seat strengthens their core muscles

3. Constipation relief - riding a bike not only strengthens our outward muscles but it also works on our inner muscles, and for our Rett girls slow GI systems exercise is wonderful and can many times help alleviate occasional constipation

4. Flexibility - Riding a bike is great for flexibility it offers a gradual stretch each time the peddle moves out. Bike riding can also help with our girls that have stiff knee joints or who tend to lock their knees into position, it can really loosen them up.

If your Rett girl already has a bike and LOVES it let us know! Click HERE and submit a review and picture of your Rett girl on her bike!

If your girl does not yet have a bike we have a few suggestions!

The Freedom Concepts Discovery Trike is designed to assist children with mild to moderate physical disabilities. The basic features offer support for the little ones that need some extra help. And for the children that require more support, there are several accessories to choose from to provide just what is needed. There is a great review on our rett girl site with a link to go to to purchase it.

The AmTryke are unique tricycles, which can be hand and/or foot operated, are designed to accommodate riders of all ages, sizes, and varying degrees of physical limitations. There is a review of this trike on our website as well as a link that will get you to the manufacturer. An additional bonus is that this manufacturer (AMBUCS) has a "Wish list" for individuals with disabilities who cannot afford the cost of an AmTryke. They have required forms that can be filled out and submitted to the AMBUCS Resource Center, that person's name is placed on their Wish List. When a chapter raises the funds the next name is picked off the list, they are notified and the trike is shipped to their home.

If you have been searching for a bike and are in sticker shock don't get discouraged. Check out this blog post for a list of ways to help with funding. You could also enter the Great Bike Giveaway through May 10, 2012 for a chance to win a free adaptive bike! For more information and to enter click HERE

We encourage you to get your Rett Girl up and on a bike but if that is not possible for her or if her doctors or therapists have advised against it there are other options! Check out some of our bike seats and trailers HERE!


Happy Riding!

A Gluten Free Easter

For many reasons holidays can be a tough for us Rett families. Being gluten free does NOT need to be one of those reasons though. Check out our tips for an easy gluten free Easter!

(Please use caution with all candies if your daughter has trouble chewing.)

Filling Easter Baskets:

• Easter-themed Dove chocolate products
• Easter-themed M&Ms chocolate products (EXCEPT for pretzel M&Ms)
• Plain milk chocolate regular-sized Hershey's Kisses in Easter-themed foil wrappers
• Jelly Belly jelly beans (INCLUDING licorice flavor jelly beans) and all Jelly Belly specially themed Easter packages
• Necco Candy Eggs
• Peeps marshmallow treats by Just Born (check the label to make sure it states "gluten-free" below the list of ingredients)
• Kraft Bunny Mallows and Egg Mallows (marshmallow Easter-themed treats)
• More gluten free candy ideas here
• Or better yet, skip the candy all together and buy a special toy instead. Find some ideas here.
(Courtesy of the Gluten Intolerance group)

Easter Feast:
Skip the lunch or dinner and opt for brunch instead.

• Eggs are gluten free!
• dye hard boiled eggs
• scramble eggs with cheese
• make these cute no crust mini frittas or these idaho sunrise or birds nests
• Sausage and ham can be gluten free
• We like the Jones Dairy Farm Brand, they have LOTS of gluten free options
• Muffins and Sweet Breads
• Yes, you can have muffins and this recipe looks delicious! It's also safe for our gluten free AND casein free Rett girls.
• Or try this yummy gluten-free lemon poppyseed bread.
  
  * Always check labels for the gluten-free symbol to make sure all your ingredients are truly gluten-free.
  
  
  
  
  Happy Easter from all of us at Rett Girl!

Finding Funding for Our Girls

A few posts ago we talked about The National Organization of Rare Diseases (NORD) and discussed how this organization has some resources to help financially with the cost of living with a rare disease.

That got us thinking.

We thought, there must be more help out there. Help for not only rare disease but children with special needs in general so parents don't have to feel like they need to figure out how to grow a money tree!

We did some digging and we're glad we did because we found some amazing organizations and resources that are out there and are willing to help girls and families like ours. We hope that if you are in a tight position and wondering weather you can afford to give your Rett Girl the equipment that you know she needs or pay for the therapy that you know she will benefit from that you will check out these links.


AMS Vans : Provides a list of available grants and other funding available to help pay for a handicap van.


Ability Found: A wonderful non-profit organization whose goal is to empower all individuals with disabilities. Ability found helps to find medical and rehabilitation equipment free of charge to people with disabilities who can't afford it. They use a team approach to accomplish this, working with the client, the provider and the vendor.


The Prayer Child Foundation: The mission of the Prayer Child Foundation is to have a hand in answering the prayers of parents with special needs children and helping these children to have the joys of a normal childhood. This foundation may help fund the request of children ages 18 and under.


The Wheel to Walk Foundation: The Wheel to Walk Foundation is a non-profit organization dedicated to making a difference in the lives of children age 21 and younger with special needs. They help children who experience difficulty obtaining funding from their insurance companies.


United Health Care Children's Foundation Inc.: The UnitedHealthcare Children's Foundation is a 501(c)(3) non-profit charity dedicated to facilitating access to medical-related services that have the potential to significantly enhance either the clinical condition or the quality of life of the child and that are not fully covered by the available commercial health benefit plan. This “support” is in the form of a medical grant to be used for medical services not covered or not completely covered by commercial health benefit plans


The United Cerebral Palsy Organization: Click on this link to find your local chapter who may be able to direct you to local organizations that aid in funding the needs of special children.


Easter Seals: Much like the United Cerebral Palsy Organization, Easter Seals has local chapters that may be able to direct you to local organizations that may aid in funding the needs of special children.


The Home School Foundation's Special Needs Children's Fund: Enables financially struggling homeschooling families to provide a quality education for their children with special learning needs.


In addition to these resources you may want to contact your Rett Girl's local Children's Hospital. Many of them offer a list of local resources that may help you with the financial challenges we face. Here is a great link to Cincinnati Children's Hospital.

Or you may want to contact your local Kiwanis Club or Lions Club who have been known to rally around their local special needs kiddos helping them with everything from funding equipment or medical bills to assisting with funding their parents travel expenses to conferences regarding their child's medical condition.


If your Rett Girl is on a Children's Health Waiver or a type of Children's Medicaid you may also want to contact them or check out your state's website to see if there are any special needs funds or resources that you can take advantage of. Here is a link to Michigan's Children With Special Needs Fund.


We hope that you find these resources helpful! If you do find the assistance that your looking for all we ask is that you give us an update - we thrive on seeing our Rett Girls shine!

A Very Special Wish

I remember one of the first families that we met when we were diagnosed with Rett syndrome had a daughter a bit older than ours.  One of the many things they encouraged us to do was to get set up with a wish granting organization.  They had just come back from an amazing trip with their Rett girl and were thrilled with their experience.  It was amazing to me that an organization would grant wishes but also, at the same time, a bit scary.  I sort of thought of those wish organizations as something that helped terminal kids and I was not about to ask my daughter what her "last wish" might be.

Time ticked on and I became more educated to the special needs and medical scene and I realized that wish organizations are not  for "last wishes" rather they are to offer some joy, peace, normalcy, relief and FUN to a child who has certainly gone through enough.  With that bit of understanding and when we believed it was right for our family we decided to take the plunge and register!

Maybe you have thought about giving your Rett girl a wish.  Maybe she has already had a wish granted and your family has amazing memories or are still living with the special gift your child chose.  Maybe you have the same concerns as I did and fear that a "wish" coincides with mortality.  Well, I'm hoping that this blog post gives you some ideas of wishes, introduces you to different wish organizations and eases your fears of moving forward with a wish.

First, where do you start.  Well, of course everyone has heard of Make - A - Wish.  An amazing organization and, as their mission statement puts it, "We grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy."  The child must be between the ages of 2 1/2 and 18 years old and have a life threatening condition.  The first step in this organization is to refer a child online or to call your local chapter.  The only people who are able to to refer the child is  the child themselves, their parents or doctor.  To make sure the child is medically eligible their doctor will be contacted.  Once that step is done Make A Wish will contact you to let you know if you are being granted a wish!

There are many organizations besides Make-A -Wish that are committed to enriching the lives of children with life threatening conditions.  When looking into organizations you want to keep a few things in mind:

#1 How involved would you like to be?  There is a local wish organization that is right down the street from us.  They have a wonderful reputation and keep their wish families close long after the wish has been granted.  They have an annual Christmas party for their families and involve them in fundraisers.  If you want to have your family more involved an organization like this may be where you want to look.


#2  How old is your Rett Girl?  Many organizations are set up for children 18 years and under but there are plenty of organizations that grant wishes to adult children as well.  Don't think that you have missed out, you can still give your adult child a wish of a life time.

#3  Is your child even eligible?  A Rett Syndrome diagnosis does not give your child a free wish.  With nearly all of these organizations a form is filled out by your child's doctor that determines if they are medically eligible to receive a wish.  Choose a doctor that knows your child best and let them know in advance that you are thinking about working with a wish granting organization, ask them if they think your child would be eligible.  This way you are less likely to be surprised by the outcome.

#4  Is your Rett girl and your family ready?  I know that with my Rett girl I wanted to wait until she was able to voice her opinion on her own wish.  We got her really consistent with her eye gaze and took lots of time to determine what we thought she really enjoyed and what she told us she really liked and waited until we felt our daughter would be physically able to make this decision.  We also prepared our family, knowing that one of daughters wishes may be a trip that involved the entire family we planned for a year where we were able to get time off of work and be able to get away.  Your Rett girl may want an item rather than trip - if she wishes for a hot tub or a newly designed room or something permanent it goes without saying that you want to make sure that there are no plans to move in your near future.

Watch a video of Mikyla, a Rett Girl, getting her wish to walk granted here

If  your Rett girl and your family are ready to take the next step then the Family Village/ Disability Culture has a wonderful list of Wish Granting Organizations that are organized by location.  This list is very complete but was last updated in 2009.  With the condition of the economy for the past few years it is good to do a reality check and make sure the company you choose is still functioning and is still able to grant new wishes.