So Weak So Strong

With Father's Day coming up, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls. 

our other Daddy posts this week:
Pete Curry, Maisy's dad: "No Laughter? No fun? No thank you."
Bill Hileman, Brynn's dad: "Be Happy No Matter How Large the Obstacle"
Sean Schenk, Kristyn's dad: "I just have to love Kristyn with all my heart."

::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

Blog #4: Bill Farnum, Ella's dad

 

In late 2006, my wife Beth and I were desperate people, conducting searches on the internet until 2AM every night. We were not searching for the latest and greatest travel deals, or the newest YouTube video sensation. We were searching for all the information we could find on Autism spectrum disorders, as our daughter Ella had then recently received the first of numerous diagnoses. Doctors, therapies, causes, clinics, insurance coverage, special diets.... you name it, we were researching it.

Later in December of 2007, Ella was finally diagnosed with a debilitating neurological disorder called Rett Syndrome. It is a devastating genetic disorder that robs young girls of their speech and motor skills, and can leave them crippled and unable to communicate with the outside world.

When we received the diagnosis of Rett from our pediatrician, a stopwatch started ticking in my head. It comes and goes and can be louder on some days than others, but it is always there...tick, tick, tick. I don’t want to say that I speak for all parents of special needs children, but I know that I feel like the clock is always ticking down and that we can always be doing something to help better our children’s futures.

Parents of special needs children tend to “ask a lot.”  If you were not comfortable raising your hand in class in school, you are going to have a tough road ahead of you. We ask a lot of questions: Who is the best doctor for that? Does insurance cover it? Do you know of a good dentist that works with special needs? Where can I find diapers for a 13-year-old?

We ask a lot from our special needs children. We ask them to endure endless hours of physical, occupational and speech therapies. We ask them to eat just one more bite. We ask them what they want or need, possibly 50-60 times a day. And we ask them to please just keep breathing.

We ask a lot from our other children. We ask them to be patient while we work with our special kids. We ask them to understand things they will not comprehend for a very long time. We ask them to love their siblings unconditionally.

We ask a lot from our therapists. Can we double up appointments this week? What else can we try? How do YOU think she is doing?

We ask a lot of our children’s battery operated musical toys. I think we single-handedly made Duracell stock jump 2 1/2 points last week....

We ask a lot of our friends and family. We ask them to try and understand situations that they have never been in and may not be sure how to react or help out with. We ask them to understand that we can’t make it over again for dinner because Ella is having “a really bad day...” We ask them to just listen, a very hard thing to do.

We also ask a lot of ourselves. We ask ourselves to keep asking, and to never stop until our children can kick a soccer ball, have a tea party with their friends, and say “I love you Mommy and Daddy.”

And as much as we ask, we appreciate more. People that say “no problem, sign me up” or “just tell me what I can do to help” are what make us get up in the morning and start asking all over again...

I am a big fan of music and it is an integral part in our lives. One of my favorite bands is Gov’t Mule, an offshoot of the Allman Brothers. I was listening to one of their new songs the other night entitled “So Weak So Strong” and whoever wrote it must have a connection to Rett Syndrome as it describes our girls to a tee. It goes:

So weak so strong, nothing's forever in her universe
Bringing comfort, bringing pain, so weak so strong

So weak so strong, turning mountains into seas of dust
Finding courage when all hope is lost, so weak so strong

Men have died from half the pain she endures everyday
Many times I've seen her spirit fade away only to rise again

So weak so strong, there's only one of her in the universe
Bringing darkness, bringing light, so weak so strong

Men have died from half the pain she endures everyday
Many times I've seen her spirit fade away only to rise again

So weak so strong, she's never really what she seems to be
But life without her seems so bleak, so weak so strong


- Bill Farnum

"I just have to love Kristyn with all my heart."

 

With Father's Day coming up, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls. 

our other Daddy posts this week:
Pete Curry: "No laughter. No fun. No thank you." 

Bill Hileman: : "Be Happy No Matter How Hard the Obstacle"

::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

Blog #3: Sean Schenk, Kristyn's dad

Sharing my feelings about something like this has never been something that I am too good at. When I first found out I was going to be a father to a little girl I was terrified. I was nervous about things like low-cut shirts and boys. After finding out that my daughter has Rett Syndrome I hope to have these worries as she gets older.

Kristyn really only met milestones up to six months old. I was worried about her not meeting these milestones but I always held on to hope that she was just developing a little slower and every thing would be fine. I remember my wife crying at night and me having a hard time relating to what she was going through because I just knew that my little girl was just as perfect on the inside as she has always been on the outside.

It was killing me to get a diagnosis to know exactly what was wrong with Kristyn so that I could know what I needed to do to make it all better. Finally getting the diagnosis of Rett Syndrome was very hard for me. I remember going to work the night we got the news and just feeling broken, like I couldn’t move. I ended up leaving work early so I could be there for my family and truly so my family could be there for me too.

Knowing that Kristyn has Rett Syndrome doesn’t really ever get easier but it is much more manageable to live with now. I know that all I can do is hope for a cure and until that happens I just have to love Kristyn with all my heart.

Kristyn has taught me so much in her two years of life. I am being more and more patient everyday. There are times when I can get so upset because I cannot figure out what is wrong with her or I can’t get her to eat but then all of a sudden she will crack a little smile and everything feels okay. I know that Kristyn has plenty to say I just wish I knew what it was; it must be so hard for her to have so much to say and to not be able to say it.

It is not easy having a daughter with special needs but I wouldn’t trade Kristyn for the world. I have gained so much more respect for other parents who have a special needs child. I love the fact that every day I go on Facebook there is always so much support for me and other Rett families.

I think that hardest part of having a girl with Rett Syndrome is the feeling that she may miss out of some of the best parts of life. I want to see Kristyn be able to go to prom, get married, and someday have children of her own. It’s hard feeling like these things may never happen. Right now all I can do is enjoy the little things like feeding Kristyn and having her fall asleep in my arms. Even when I found out I was having a little girl I never imagined the feeling I would have when I am looking into those beautiful blue eyes she has. Kristyn means more to be then I can describe in words.

Sean  Schenk

"Be Happy No Matter How Large the Obstacle"

With Father's Day coming up, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls. 

our other Daddy posts this week:
Pete Curry: No laughter. No fun. No thank you.

::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

Blog #2: Bill Hileman, Brynn's dad.

My daughter Brynn was diagnosed with Rett Syndrome when she was 2. We soon found that although she was not physically able to do many things, she still understood and was just like other children her age.

One of our favorite things to do is to swing at the park. Even when there is no swing that she is able to use I will swing with her on my lap (we can go higher that way too). Brynn LOVES Mickey Mouse. I think I know every song and have seen every episode of the Mickey Mouse club house. Our other favorite thing to do is to go out to eat. Brynn gets so excited while we are waiting for our meals to come.

When we first found out that Brynn had Rett Syndrome it seemed like a daunting task. Of all of the possible diagnosis this one seemed to be the worst. As we continue to learn more and more about Rett Syndrome our future challenges seem a little less scary.

We know that there is hope for our daughters. I think that Brynn has taught me more than I could ever teach her. She has taught me how to smile through adversity, laugh when things get tough, and to be happy no matter how large the obstacle.

Bill Hileman

"No laughter? No fun? No thank you."

With Father's Day just one week away, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

First up: Pete Curry, Maisy's dad.

We had it all planned …. My wife would take three months maternity leave and then I’d cover things until a slot opened up at the on-site day care at the University where I worked. I envisioned taking lunch breaks and bringing Maisy into the lab – maybe she’d learn to love real science instead of political science like her mom. As it turns out, I do get to bring Maisy to the lab, but it involves things like blood draws and eeg’s, not exactly the fun experience I had planned. Rett changes things. And, no way around it, change is hard.

I’m trying to think of what advice I’d give someone approaching their first Father’s Day as a Rett Dad – my first was spent curled up next to my daughter in a hospital bed, which was a more harsh introduction than I think I needed. At that point, I just wanted the seizures to stop (and maybe a cup of coffee). On the practical side, I would say figure out some parts of your daughter’s routine that you can take on. For me, it’s getting Maisy ready for school – dressed, breakfast, meds, pack the bag, potty, get her to the bus. I also do a bunch of other things, but my wife is going to read this and, being a lawyer, she’d probably argue that I don’t always do this or that.

But, more important, I guess I would say that remember your daughter is not as fragile as she looks (or your wife thinks). You can dunk her in the pool, tickle her chin, and swing her high. Yes, she may start to laugh too hard and have a little seizure, but what’s the alternative? No laughter? No fun? No thank you.

Happy Father’s Day.

Pete

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.

ABSORB OR BLOCK?
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:
 
oxybenzone
abobenzene
retinyl palmiate
parabens
fragrance
Para amino benzoic acid
Octyl salicyclate
Avobenzone
Cinoxate
Padimate
Dioxybenzone
Phenylbenzimidazole
Homosalate
Sulisobenzone
Menthyl anthranilate
Trolamine salicyclate
Octocrylene

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 www.AvaAndersonNonToxic.com/JennMiller  

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 Jenn.Miller76@hotmail.com.

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!  

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.