Sunday, December 11, 2016

No More Ceilings

by: Duncan Millar, Army of Us

Duncan and crew taking on one of many challenges to raise awareness for Rett Syndrome.

There are many things about Rett syndrome we all wish we could change, but there are also some things we already can.

Somewhere along the line, somebody thought that because Rett syndrome affects the brain, it must affect intelligence. But, now we know that the intelligence of people living with Rett syndrome has been severely underestimated.

It’s not only that we have completely misjudged their intelligence, but also how we have been taught to make a negative the starting point of every conversation we have about Rett syndrome.

Instead, like we do with other children, we should choose to believe in their potential with no limits. The sky's the limit; they can reach for the stars.

It’s been 5 years since I was introduced to Rett syndrome.

My first mistake was to Google it, my second mistake was to believe what I read. As soon as I did, I started building ceilings.

I read that my goddaughter Carys would never walk, or talk, that she would have breathing problems, seizures, weight gain problems, scoliosis, osteoporosis and most importantly I read that Carys would never exceed the intelligence of 7-year-old girl.

Those things became the foundation of the ceiling I was building. It was incredibly low and it blocked out the stars.

I then discovered Rett had been reversed in a lab, a cure had been found. All we had to do was raise as much money as we could. I’ve run countless races now, participated in more Tough Mudders than I have fingers. I’ve climbed the highest peaks in Britain and I’ve completed an Ironman. I was part of a group that formed a charity to try and help raise money for this cure.

My world exploded. Suddenly Rett syndrome was more than just Carys, it was filled with loads of new people: parents, families, friends and most importantly, other people living with Rett.

When I found out that some of these people were communicating, reading and even controlling their lives, it was a dawning moment for me; the light switched on.

While the future of Rett syndrome is very, very important, people living with Rett syndrome right now are more important.

There are things we are fighting to change, but there are also things we can change right now.

These people are smart, they’re chock a block full of amazing, unbridled, exciting, raw potential. They are funny, they are stubborn, they are more tenacious than any Olympic athlete. Our role is to help them break through those ceilings and see the stars. To be the stars.

This is why I fight Rett syndrome, because I believe that goal is attainable. I choose to surround myself with people who break ceilings and reach for the stars. I believe in the people who are fighting to give the girls the tools to empower them and equip them so that someday, they will be the people leading the army.

I’m now lucky enough to be the Godfather of two people, and share in the lives of countless other girls (and a few boys) living with Rett syndrome. Whilst they live with it, it doesn’t define them. Carys and Melody are unique and most importantly, I bet neither of them have built a ceiling for me.

From all of us at Girl Power 2 Cure and, we thank you Duncan for your never-ending passion, commitment, and amazing sense of fun which helps our entire community strive to be the best and do the best for our girls. 

Thursday, November 3, 2016

First Words

by: Sarah Wilds M.S., CCC-SLP - Speech Pathologist/ Regional Consultant for Prentke Romich Company (PRC)

Those first words are everything.  There’s nothing like hearing your child say “mama” while grinning and pointing.  But when those words come and then disappear, or don’t come at all, there’s no clear path for what happens next.  As parents, we’re not prepared for asking difficult questions or hearing uncomfortable answers.  We rely on each other and our gut feelings.  As speech pathologists, we don’t have a rule book for introducing augmentative and alternative communication (AAC).  We rely on listening to families, watching our clients, clinical judgment, and trial and error. 

In my capacity as a Speech Pathologist/ Regional Consultant for Prentke Romich Company (PRC) I’ve encountered hundreds of children and their families/support teams. I’ve had to wrestle with discord between family wishes for their children’s communication and my professional judgment. I’ve had to balance the communication option that I am certain will be successful in the long term but doesn’t have the short term success that the team wants.  This precarious balance has never been more evident than in my work with girls with Rett Syndrome.  Which language system is best?  Which access method will be most efficient?  How can I encourage implementation of AAC when there are so many other obstacles families are facing?  Three girls have shaped how I work with individuals with Rett Syndrome, and they have all taught me different things by letting me into their lives. 

Chrissy taught me that words matter. I met her when she was about 4 – a strong-willed, determined little girl who broke out in huge grins when her parents or princesses were involved.  I worked with her before her diagnosis of Rett, and she used her hands to access Unity (a language system with hundreds of pre-programmed words).  She wasn’t always exactly on target, but she loved exploring. And we knew that she was being intentional about her message when she repeated a word or phrase several times and then switched her gaze to us.  At one point, her therapists and I took away some of the words to help her learn the “important ones,” leaving her with about 10-20 words.  This didn’t go over well – her enthusiasm for using the device stopped.  Once we added in more words, however, she forgave us and jumped back into exploring and using the device intentionally.  Words matter. We needed the option to start simple, but in order for success to occur we had to think big.

Jordynn taught me that access options are important.  Jordynn is three – a social, active little girl who has eyes that you can get lost in.  When we started looking at AAC, her speech pathologist had recommended the NuEye eye gaze access method because of her Rett diagnosis.  Her desire to touch the device, however, led Jordynn’s mom and I to think more about touch access instead. When that proved to be inaccurate, even using really large buttons, we then trialed NuPoint (PRC’s head mouse).  Although Jordynn had good head control, her head movements and her eye movements weren’t coordinated, so she would look at a button on the screen with her head turned in another direction and select the wrong word.  We finally came back to the initial recommendation of NuEye.  Jordynn did beautifully with 15 buttons on the screen and especially enjoyed using the core words to help her mom read books and her fringe words to select what type of food she wanted. I apologized to Jordynn’s mom for trying out the different access options before ultimately circling back to NuEye, but she kindly noted that she was thrilled to see all the different access options available.  Knowing those options existed not only helped cement her commitment to eye gaze, but also gave her comfort in knowing that there were additional access options available if necessary.

Finally, Mary taught me that a network of support is essential. Mary is a sweet 12-year-old whose smile lights up a room.  After years of using low-tech boards and books, she began using an Accent 1400 with NuEye late last year.  When she first started, and with the addition of daily therapy, she was successful with 28 buttons on a screen, but with many of the buttons hidden.  After a summer break where travels precluded much device use, she started this school year struggling to be successful.  Phone calls, online trainings, and in-person visits helped re-establish positioning and fine-tune calibration.  But more was needed to jump start communication.  So I called in back-up. An experienced colleague suggested we enlarge the buttons on the screen to focus (at least for a while) on increasing Mary’s confidence and ability with eye gaze in general.  It truly takes a village to support a child with AAC: the device itself is a start, but the enthusiasm, dedication and hard work of those surrounding the child and that device that are essential ingredients to communication success.  One person can’t do it, one website can’t do it – a full network of support resources is crucial.

Words matter. Access options are important. Support is critical.  These are the lessons I’ve learned from working with girls with Rett Syndrome.  I’ve watched as within the AAC industry device hardware/ eye gaze systems have improved, vocabulary options have expanded, and support resources have become more individualized. All of these mean better communication outcomes for individuals with Rett syndrome and others who use AAC.  But we still have lessons to learn, and improvements to make, and keeping the conversation open and learning from each other is a start. 

Thursday, August 18, 2016

Rett Mom's Crafty Side Helps Daughter and Others!

Meet Shirley. She has a 15-year-old daughter Kaila who has Rett Syndrome. They live in Upstate NY with husband/father Paul and their other daughter, 7-year-old Kinley. 

Shirley shares, "I have always been a crafty person. I enjoy scrapbooking, sewing, jewelry making, and many other types of crafts. I especially love making things that are Rett Syndrome related. (One year I made over 100 bracelets for all of the attendees at a Rett Syndrome conference!)"

Shirley took her skills to the next level, creating a business making items to help families of special needs children. In honor of Rett Syndrome's awareness color purple and her daughter, she named it Purple Princess Designs.

"I began sewing wheelchair pads and bed pads because one day Kinley had a friend over and they asked what those green things her sister was sitting on were," she explains. "Those 'things' were the dreaded, disposable Chux pads. I didn't want Kinley to have to explain that and I didn't want Kaila to have to deal with those innocent questions. That's the moment I decided I had to come up with something that would be cute enough that it would look like an article of clothing yet be functional. We had some reusable pads that looked just like Chux, so I sewed some cute fabric on them, and Purple Princess Designs was created!"  

Kaila sitting with the Chux pad before her mom's creation

"My hope is that other families will love these as much as I love making them." 

You can shop for wheelchair pads or mattress protectors at Purple Princess Designs' Face Book Page.

Wednesday, July 13, 2016

Rett Siblings - They Need Inclusion Too

Guest Blogger - Stephanie Millard

Rett Syndrome came into our lives about 14 years ago, when my daughter was just three and a half. We had been on a nearly two-year mission to figure out what had been taking away Allie's skills, her words, and her sweet temperament. I admit that during that time, and for a few years after, her brothers (one five years older, the other two and a half years younger) did not get the attention or opportunities they probably should have, and it has impacted each of them differently.

Allie's older brother was so thrilled when his baby sister was born. He held her and played with her, filled with love and joy at her very existence. When she started experiencing what we now know are the early stages of Rett regression, he was sad and didn't understand what was happening, but none of us did, so I told him not to worry about it and that everything would be alright. He seemed to just accept that and continue on with school, and with being the best big brother he could be. He handled the stares and whispers so well that it never occurred to us he might be struggling. When he was not quite ten he finally told me he had thought it had been his fault - that he had somehow been responsible for all the screaming and biting.

By then he knew it was the gene, and not his fault, but that he had ever felt that way made me so upset with myself for the pain he could have been spared. I had been so busy with caring for Allie, taking her to appointments and therapies, attending EI/ IEP meetings, and so much else, that I had not really paid attention to how he was doing. I helped him with homework, went to parent / teacher conferences, and assumed all was good because he seemed fine. I hadn't noticed how isolated he had been, how few play dates he went on, and how deeply impacted he had been by adjusting to life as a Rett sibling. That conversation about how he had felt responsible and had kept all his guilt and grief to himself really was a wake-up call for me.

"Inclusion is something we fight for on behalf of our special needs kids, and it can seem odd to think that Rett siblings might need a plan for inclusion in non-Rett world."

From that point forward, we (my husband and I) made a point of finding a life for our boys outside of Rett. We had to establish a type of "inclusion" for our Rett Siblings. For our older son that meant participating in sports some, taking guitar lessons, experimenting with a Billy Idol look, and just taking the time to get to know himself, all while balancing time with his sister. Because he hadn't always been a Rett sibling, finding the blend between the Rett and non-Rett world took more effort than it did for his younger brother.

Allie's younger brother never knew a life without Rett. And, of course, by the time he was old enough to realize his sister was not like other sisters, we parents had already been through the hard questions and were ready with better answers than we'd had for our older son. We made sure he had time with peers and engaged in activities outside of school or church. Athletics has been a major part of his life, though he still makes sure to spend time with his sister. Finding the balance seems to have been easier for him, and we'll never know if that is because he is younger, or because of some other quality inherent to his makeup.

The takeaway comes down to acceptance and inclusion. Once Rett entered our lives, we accepted it - maybe a little too well, forgetting for a time that there was still a non-Rett world. The other half of acceptance is knowing that no one gets parenting 100% right - and that's true for families with or without special needs, so don't beat yourself up when you realize you could have done it better.

Inclusion is something we fight for on behalf of our special needs kids, and it can seem odd to think that Rett siblings might need a plan for inclusion in non-Rett world, and yet it also seems completely reasonable. The life of a Rett sibling is not typical, and needs incorporation of peer activities that will help them establish themselves as individuals outside of Rett. Now, if we parents could learn and remember to do this, too, that would be fantastic.

Thursday, May 12, 2016

Teaching Math When You Can't Put Pen to Paper

My sweet Rett Girl is 11 years old.  She is one super smart cookie!  She is in a 4th grade general education curriculum and ROCKS it!  Several years ago we made the decision to homeschool and haven't looked back since. 

Annie LOVES science and history.  We've been able to find some really great science lessons that hold her attention and of course she LOVES the experiments.  History is fun because she's a reader and will get really interested in all of the stories from the past.  These subjects seem to be the easiest for her because they're FUN!

Reading and writing are a bit more difficult, we need to be having a good day and have a good chunk of time set aside in order to work on reading comprehension or writing short stories.  Thankfully we have Rett University to help us out with these two challenging subjects.  The resources there have helped us tremendously and have really shown me what Annie is capable of.  

Math is a subject where Annie and I both fall VERY short.  Annie is not a fan of math, and I have scoured the Internet up and down trying to find a way to teach, and do math with someone who is unable to put pencil to paper.  This is the challenge, when you can't write down your steps upper level math becomes very difficult.  Truth be told we got so frustrated that we actually took some time off of the subject.  

Then one day as I was scrolling through Facebook I saw an ad for a DVD with simple stories and animation to teach kids their upper times tables.  And not only teach them but this DVD has been shown to teach kids in less than a week!  What?  Of course I had to buy it and try it out for myself!

I ended up purchasing the download so I could get the videos same day. That afternoon Annie and I started working on math again!  Annie is VERY attracted to animation so the videos caught her attention right away.  The videos were very engaging for her and were pretty short so we started watching them daily for about a week.  There were printables as well that were very easy to modify. I'm happy to say that Annie has done great with the videos and it's been a huge relief for me to find something that could help her continue with her math curriculum.

The method that Times Tales use is simply stories that provide students with a "memory peg" allowing them to quickly recall facts.  The stories aren't very exciting and they're only a couple sentences long but after each story, the video shows how it translates into math problems. 
During the beginning of the DVD, you learn the characters, each of which symbolizes a number. The characters (numbers) are used in the stories (math problems).  It's abstract and seems a little funny at first when you watch the DVD's but if your kiddo is a visual learner it may be worth a look!  

You can check out a sneak peek HERE.

If your interested in purchasing Times Tales, Rett Girl has set up an affiliate program with them. Use THIS LINK and 30% of your purchase price will go to Girl Power 2 Cure to further our mission.  Check it out and let us know what you think!  

If you have a great product or idea for teaching math or ANY subject to kids with Rett Syndrome or complex needs please share with us in the comments!  

Happy Learning!
Bridget MacDonald  

Thursday, April 14, 2016

My Child's Surgery was a Source of Inspiration

by Nicole Puzzo
mom to Stella (age 6) and creator of zipOns™

You never can prepare yourself enough for watching your daughter at the age of 5 1/2 years old undergo double hip surgery, hamstring, adductor and calf lengthening as well as trigger thumb release all at one time.

Creator Nicole Puzzo with business partner Joanne DiCamillo

My name is Nicole Puzzo and my daughter Stella has Spastic Diplegia Cerebral Palsy and is in a wheelchair. Through all the ups and downs that we go through with our children, watching my daughter through this healing process was an experience that I first wouldn't wish on anyone, and second only reconfirmed for me how amazingly strong our children are and how hard they fight. It is truly inspirational to be apart of their journey.

Stella's recovery lasted 10 weeks, with an 8-day hospital stay. When we came home it was very emotional for all of us to be there to help Stella through this period. There were many sleepless nights and long days. However, I have to say with each day that passed, like most things, it got better and better.

Stella was stronger, healing and finding her smile again. What I found so interesting throughout the process was when I asked doctors what I would use for clothing for Stella during her recovery (because she had two casts and a bar to hold her hips in place) they didn't have an answer for me. They told me to use dresses and nightgowns but she was unable to wear underwear so although a solution, she was still feeling exposed. Needless to say with any recovery, we had a big support system and many visitors.

To provide Stella some privacy, I came up with pants that opened all the way up on each side. I took a pair of pajama bottoms apart and added velcro to the sides so they could be taken on and off without going over her casts. This was a game changer for Stella! She was more comfortable and she started to feel a little bit more like herself again. Once I saw her light shining again, I knew that other children would benefit from having these if they ever had any type of surgery or injury involving their legs.

Lucky for us, my friend was on board with helping me facilitate getting this product out to so many families. We are so thrilled to offer a product that will hopefully bring a little light back into everyone's recovery during such a trying time.

You can check out zipOns™ by befreeco here:

Friday, February 5, 2016

Is Technology Affecting Your Rett Girl's Sleep?

by Megan Nunn

Many of our girls (like ourselves!) are highly motivated and even calmed by devices like iPads and smart phones. I’ll never forget how excited I was when one of Ava’s therapists opened our eyes to how helpful and appropriate these tools can be for our girls. When nothing else motivates our almost three-year-old, it is absolutely amazing the things she will do to watch a movie or play a game on her iPad.

These high-tech tools are not without a price, though. The blue light they emit has been shown to decrease melatonin*, which is needed to regulate sleep. Sleep disturbance is a big concern for Rett girls because they typically already have decreased and sporadic nighttime rest, which contributes to a myriad of problems in the day time, from lethargy to trouble concentrating to mood swings.  Sleep deficits also lower the seizure threshold and can precipitate or exacerbate seizures, which is a huge concern for many of our girls. In addition, chronic exposure to blue light may cause macular degeneration, especially in children.

Fortunately, the effects of blue light can be addressed and minimized with a few quick tweaks to the girls’ normal routines. Keep in mind that these tips also apply to computers, television, and smart devices. 

To minimize sleep disruption:

1. Turn off devices two hours before bedtime. If your daughter needs to use one, choose the smallest device available (such as a phone instead of a tablet).

2. Aim to give the girls time outdoors everyday, especially in the mornings, to assist melatonin production and promote a healthy circadian rhythm.

3. Dim the screen brightness on your smart devices later in the day to help the girls’ bodies prepare to rest. For iOS cell phones or tablets, you can adjust the settings at night from your settings screen. Go to General, then Accessibility, then Invert Colors.

4. Screen shields for your devices may also help and are inexpensive- these can be found online at sites like

5. Try a blue-light minimizing app specific for your device:
6.  More blue-light minimizing products:

We hope you and your families have a happy night’s sleep while benefiting from all of the great technology available to us!

Guest blogger Megan Nunn is a pharmacist and mom to two beautiful girls, Ava (RTT) and Cecelia.  

* Source:
Harvard Health Publications, Harvard Medical School

Friday, January 15, 2016

Using Wrist and Ankle Weights to Address Physical Challenges

by Mary Jane Baniak, DPT

The following blog post is an excerpt from a blog by MightyTykes consulting DPT Mary Jane Baniak. To learn more about how MightyTykes might help your Rett girl and before beginning any exercise regiment, please consult your child’s therapist or physician.

Using wrist and ankle weights as an adjunct to therapy to help address a wide range of issues and challenges in young children. Some examples of conditions more common to girls with Rett Syndrome which weights can help include:

Toe Walking/Gait
Many children walk on their toes or are otherwise unsteady on their feet due to tightness in their heel cords, sensory issues or weakness. Ankle weights can provide children some input and help cue kids to keep their feet flat and encourage a normal walking pattern.

General Weakness and Low Muscle Tone (Hypotonia)
Low muscle tone can cause children to be weak and delayed in gross motor skills, such as rolling, sitting independently, and crawling.  Weights can be used to help build strength, and can be easily worn, with supervision, during routine daily activities.

Tremors/Stereotypic Movements
Neurological and sensory problems often cause tremors or stereotypic movements, unwanted actions that can impair function or simply be an awkward distraction. Weights can add sensory input to arms and legs, helping to decrease unwanted movements. This can be especially helpful in eating.

Mighty Tykes are ankle and wrist weights that are the perfect size and weight for babies, toddlers and kids.  They are very low profile, come in several different weights, are lead free, latex free, waterproof and made in the USA!   Plus, they are SUPER CUTE!  Check them out HERE.

Mary Jane Baniak, DPT is a certified Early Intervention Specialist and a Certified Infant Massage Instructor, and Certified Weight Trainer, working primarily in home- and school-based settings. A married mom to three girls, Dr. Baniak is an experienced race director and ultra-runner and endurance athlete.