It’s leading up to our second year of supporting Awareness Month as Army of Us and we’ve decided to do things a little a differently.
For many families who live with Rett syndrome, Awareness Month is an exhausting month-long reminder. A constant barrage of facts and statistics roll up your wall, as we all share images and stories about Rett syndrome, desperately trying to create awareness.
October has always been a tough month, tough to prepare for and tough to manage, with so much expectation and added responsibility for families; putting this kind of added pressure on you is just not what Army of Us is about.
This is where the idea of the Hope campaign comes from; we want to spread a positive message during October (to families and their networks of friends) that we have a lot to be hopeful for. This has been an incredibly successful year for advances in Rett syndrome and we believe things will only get better.
Rett takes so many things but we also have so much to be hopeful and grateful for.
We have known about the cause of the condition, and known about the potential reversibility for some time now, but that shouldn’t mean we stand still whilst we wait for a cure.
The past year has shown us personally and as a community why we can be hopeful and positive today.
Research discoveries about the mechanisms of long genes, and the progress with x-inactivation means potential treatments may be closer.
The orphan drug approval and results around Trofinitide mean we may be able to improve some symptoms now while we wait for a genetic fix.
These discoveries and other drugs in trial, like Copaxone and Ketamine, will help keep our loved ones affected by Rett stronger and healthier, aiding them to learn more skills and gain abilities right now.
The lower prices and greater acceptance of eye gaze and things like the Steve Gleason act in the USA are also very important breakthroughs. Eye gaze devices are changing the way people treat our girls (and boys), as we discover new ways to break down that communication barrier for Rett syndrome.
With all of this in mind, we’ve built a whole bunch of goodies that will help make your Awareness Month easier; we have redesigned our traditional “Rett fact cards”, which can be printed out and handed out at school. The Rett fact cards will be connected to our what is Rett syndrome blog.
We’ve also created a new group of cards; we call them “hope cards” and we hope you’re going to want to share them as much as we do.
Our hope cards contain the information that has brought us hope over the last year (and a bit longer), in a simple sharable format. Something we can share with our family and friends to say, hey, look what’s changing, we are beating this thing.
We have redesigned the posters and have added all the new girls, and we will keep adding more girls (and boys) through awareness month. So keep your eye out for them early next week.
The pictures we have been collecting for the last few months are filling the Army of Hope album and they have a very special purpose.
If your daughter (or son) is included in this album, please make sure you go to the album and “tag” her name in. It’s easy, click on her photo and click tag, then type her name, then leave a special message for her in the comments. Something as simple as I love you, or a few lines of your favourite poem.
If they’re not represented, please send us a picture so we can include them.
We promise you it will be worth it when October starts 😉
We’ve started a week early so you can use the stuff we make and be prepared for any of your Awareness month needs. Like printing our fact cards and posters for school or class to explain Rett syndrome. We want to make October easier for you, and we feel giving you access to our goodies a little earlier will do exactly that.
Profilomatic has been totally rebuilt and now works on mobile devices 🙂 You can upload your favourite picture from your phone, apply an Awareness Month frame, then share.
More hope or fact cards
If there are other hope cards (or fact cards) that you would like to see made (or translated) please give us a shout (firstname.lastname@example.org) and we will do our best to make it happen.
As well as our HOPE campaign we will be supporting other campaigns from our friends too; there will be a host of profilomatic campaigns like the #realiferett for #rettober campaign in Australia and #nomoreemptyarms here in the UK.
In August, my daughter turned three and it marked one year since she has been using a communication device, namely the Tobii. Today I was watching her and thinking about how far she’s come and also how far she has to go. It also got me thinking about how many gains she’s made in other types of communication.
When her diagnosis was confirmed, I remember feeling completely overwhelmed by the work I knew was ahead of me. I had wished that there was a manual telling me step by step what to do. Sadly there is no ‘How to Teach Your Daughter with Rett Syndrome to Communicate” book. However, after one year of piecing together opinions and advice from other parents, teachers, slps, cdas, communication experts, and from my own experience and intuition as a parent and teacher, I thought I’d pay it forward for the newly diagnosed parents out there wondering where to start.
Note: this blog post is simply a summary of what we’ve done- take it or leave it! I make NO claims that what we are doing is the ‘right’ way to do things- in fact, I often second guess myself and lose sleep wondering if I should be doing things differently, or if there is some other magical method out there to ensure she communicates effectively and will guarantee that she is fully literate later in life. Because, above all else, that is my number one goal for Ava- if she can read and write (and learn to use the Tobii proficiently), she will be able to communicate with no barriers. My friend Jo is proof positive that IT IS POSSIBLE. It’s up to us to figure out how to make that happen.
So. Here it goes…Learning to communicate with Rett Syndrome: what we did during the first year…
Engagement and interaction:
Engagement and interaction is key to any communication and a good starting point. And while this was officially a goal for Ava, the real work here happened on my end. When Ava was going through her regression, I went through a sort of regression of my own. Call it depression, sadness, despair… it affected MY ability to engage and interact with Ava. She checked out and in some ways, so did I. I learned quickly that I needed to get over myself. Engagement and interaction go both ways and they are largely reciprocal. We had to find what interested her (which in itself was a difficult task) and use that as a starting point.
This was particularly challenging as we began this work (unbeknownst to us) during the regression phase. I do think that developing her engagement in the world around her was key and allowed her to be open to learning the other methods of communication. We kept at it but also read her cues. It was important to push her to interact with us, but not push too hard that it would turn her off.
Goals: Making and maintaining eye contact, noticing and acknowledging new people entering the room, participating in an activity or conversation by actively looking.
Tools/Method: Highly animated voice and facial expressions, facial proximity and vocal volume during conversations and salutations, and highly motivating activities like bubble blowing.
Example: Ava responded quite well to bubbles. We would use the bubbles as a way to solicit eye contact. Using an animated voice and facial expressions we would say: “Ok- I’m going to blow the bubbles. 1, 2, 3, Blow!” We would do that several times. Then we would do the same script but take an audible breath and pause before the word “blow” and wait a few beats to see if she would look up.
As soon as she did (even if only for a split second), we would blow the bubble. She learned that the quicker she looked, the quicker she would get the bubbles. Again- this activity was done during her regression phase when she was 1.5 years old and we had no diagnosis. I’m sure there are people who would disagree with this method, but I really think it helped Ava relearn her social skills (and got her to smile and giggle again!)
Eye Pointing and Choice Making
Before I get jumped on, let me be clear about choice making! I do not think choice making should be the only mode of communication available to anyone. Period. However, it was particularly helpful in helping Ava understand that there was power in communicating (especially when she was under 2 years old), and frankly, it was helpful to know what she wanted!
I look at choice making as part of communicating. With my older, typically developing daughter, I give her choices all the time. Do you want strawberry jam or apricot jam? Go to the park or go for a bike ride. Choices happen all the time, and they are an important part of communicating.
Goals: make decisions for foods and activities.
Tools/Method: laminated pictures (we used actual photographs at first) of a variety of foods (fruits were a big motivator), activities including swing, stroller, toys and TV shows. At first, we took looking at the card as her indication, then moved on to looking at the card then at us for confirmation. This was a bit of a hit or miss so we transitioned to aural choices using non-verbal yes (see below).
Non-Verbal Yes/No (and low tech communication)
Developing Ava’s Yes/No response has been the single most useful communication tool this year. There are many different schools of thought on the method of achieving the ‘yes’ and I’d encourage everyone to read all of the information out there. Developing a clear yes makes things easier and opens up new possibilities for communication.
Many types of low tech communication programs depend on having a yes/no in order to implement partner assisted scanning (basically someone reads off categories/vocabulary, and the person indicates which word they would like to say by giving a yes response when they hear the one they want to say). Some types include Flipbooks (for communication, literacy/writing), customized vocabulary books/binders, and the PODD system.
Goals: consistently indicate a clear yes response. Lack of yes response= No
Tools/Method: Identify the natural yes (for us it was looking at the speaker), verbal prompt (“remember to look at me to say yes”), verbal affirmations (“good looking at me to say yes”), reinforcement and practice by playing games, and throughout everyday activities. An assortment of partner assisted scan low tech books for a variety of purposes (communication, storytelling, ABC flipbook…)
Example: Here is a video that shows the non-verbal yes (and no), basic partner assisted scanning, and the ABC flipbook (a.k.a. an alternative pencil, although in this case she is not using it for spelling but to select which letter video she wants to do next)
So off the bat, I will once again say that there are a variety of devices and programs available and the following is simply what we did.
My husband and I attended the RSO conference in Washington for the main purpose of learning about eyegaze communication. I signed up even before we had a diagnosis because I figured even if it wasn’t Rett, eyegaze was going to be a key player in her communication.
Listening to Judy LaRiviere and Susan Norwell was enlightening, especially in light of all of the literature I had read claiming girls with Rett had severe cognitive impairment. I saw videos of girls not just communicating but reading and spelling!
This got my teacher wheels spinning, and in some ways helped me cope with the grief of the diagnosis we had received two weeks prior. We purchased a Tobii Eyego for her second birthday without having trialed anything because it seemed that the majority of support available online (from other parents and from some of the communication experts) for Rett Syndrome were for Tobii devices.
We went this route because it was clear that getting a device at Ava’s age in Ontario was not a common occurrence (although the system is hopefully starting to improve). This was a bit of a reckless gamble on our part but we were lucky that Ava was able to use the Eyego.
I reached out to Susan Norwell and set up a trip to visit her in Chicago. She helped us set up the Eyego with my dad’s old laptop (using the free trial software of Communicator, Sono Primo, and Sono Flex) available on the Tobii website, and had some conversations with Ava (!!!) and away we went. One reason we follow Susan’s methods (aside from her extensive experience) is because of her unwavering belief in the abilities of girls with Rett. No matter who you choose to work with or what method you follow, find someone and/or be someone who believes in your daughter.
Some general comments here- it takes time and patience. It is a lot of work and sometimes I want to bang my head against a wall in frustration. I have to constantly remind myself of her age, and that just because she has access to hundreds of words, does not mean she is going to immediately start using all of them accurately.
Kate Ahern, another communication guru, often likens it to the way a baby learns to talk. We don’t stop talking to a baby because they don’t answer back. It takes time and lots of modeling.
Goals: to access and make selections on the screen, to understand that her eyegaze is controlling the screen, find an appropriate dwell time range, play independently, enjoy Tobii time, communicate with some consistency, use core words, and begin to make word combinations.
Tools: Tobii PCEyeGo (at first), Tobii i12, Sono Primo, SonoFlex, literacy videos, engaging activities, support from professionals and parents on various FB groups.
Note: If you have an i12, SonoPrimo and SonoFlex are already installed IN your device. Go to ‘readymades’ and you will find them under the Symbols tab.
Methods: We started Ava with a grid of 16 words using the Vocabulary pages in SonoPrimo. We gradually moved onto the 32 page vocab once it became clear she understood the concept. We used motivating activities and honoured every word she selected. For instance if we were playing with bubbles and she selected ‘big’, we blew big bubbles while constantly modeling.
If we were eating dinner and she said “drink”, we shoved the drink in her mouth so that she understood that when she selected a button, she was communicating. She caught on very quickly using this method.
Here is some early video of Ava using SonoPrimo after 1 month of using her Tobii:
SonoPrimo is fun because it has games and correlating vocabulary pages. We found (and still find!) that Ava does better doing the actual game in real life and interacting by having the vocab/context page open so she can communicate while the activity is happening- great for reinforcing the meaning of words and introducing new vocabulary. A great activity (you’ll notice a theme here!) is bubble blowing using the vocabulary 16 or 32 page.
When we transitioned over to SonoFlex, the program she now uses most of the time, it was overwhelming for Ava and for me. The difference between the two programs is that one is a ‘robust language system’ giving her access to all of her vocabulary (SonoFlex) vs theme-based which gives her access to some core words and theme vocab all on one page.
Though we do use SonoPrimo sometimes, the disadvantage is clear when she wants to change the subject or if what she really wants to say is not on the page. With the bubbles for instance, in SonoPrimo she can say lots of bubbles related vocabulary, but if she wants to ask for a drink or if I’m talking too loudly and she wants me to be quiet, she has no way of communicating that. Let me be clear though- SonoPrimo has its place. I loved SonoPrimo and there are days I wish we could just use that. SonoFlex is HARD and Ava is only 3. But she’s learning…
Model, model, model, and then….model some more.
There are some days I’m pretty sure I use the Tobii more than Ava, but the way I look at it, she’s not going to figure out how to use it if she doesn’t see others (including her family members) use it. At first it was daunting. I didn’t use the program for the first few months because I couldn’t figure out where anything was! The thing that helped me the most in that department was to take books and try to read them ONLY using SonoFlex.
I also had an imaginary conversation with myself one evening after everyone had gone to bed (and yes, there was wine involved!). Not only did this give me an idea of where everything was, but it also showed me how limited the program is. So if Ava doesn’t make perfect sentences, who can blame her?
A lot of people use the Pati (King-DeBaun)/Judy (LaRiviere) pages which are phrase based, meaning she doesn’t need to put words together- just select the phrase she wants to say. A lot of girls have success using them. I’m going to admit I’m not the greatest with exposing her to and modeling these pages- but it is on my list of goals this year. Because as Susan once told me, sometimes a kid wants to shout something quickly and navigating two buttons per word to create a sentence just won’t cut it. There- I wrote it down, so hopefully this will make me use it more.
The few times she has used it, she has used it well (I remember when one of her slps came over and was wondering if she would be able to navigate from program to program, Ava got out of SonoFlex, opened the P/J pages, requested a drink then promptly looked at the fridge!) The nice thing about these pages is that the pictures are pretty self-explanatory and the meaning, for the most part, is easily understood just by looking. I wish the Sono vocabularies would use those images instead of the Symbolstix.
When Ava started putting words together, we celebrated (and re-modelled some more!) everything she said, even if it didn’t make a whole lot of sense. ‘Presume Competence’ is a phrase that is tossed around quite a bit, especially by me! What does it mean practically speaking? If she selects a word or puts several words together, I assume she did it on purpose and that there was meaning attached to it.
I talk about her selection, remodel what she said, then muse out loud what it could mean. Sometimes she gets her message across and sometimes she doesn’t. Sometimes she wants to say things and other times she wants to explore, and sometimes it’s hard to differentiate which ‘mode’ she’s in. However, I don’t ever doubt that she’s learning and paying attention.
Here is an example of presuming competence. At the beginning of this video, I wasn’t paying too much attention, I admit, and was just kind of throwing ideas out there. Then this happened… Presume Competence.
Side note: We take a lot of videos of Ava using her Tobii not only to show our friends and family how well she’s doing but to document her progress once she starts school. Apraxia is a tricky thing and she doesn’t always want to perform, especially if she’s feeling pressured. I’m a skeptical person by nature, so seeing is believing and I want to ensure that everyone she is exposed to in the education system believes that she is smart and has lots to say.
This one is probably the most important thing. We read with Ava all the time and while she loves books, this wasn’t always the case. There was a long time where I doubted Ava was even listening to me (let alone looking) while reading books. We kept on reading, made sure we gave her lots of funny stories, and used our best acting skills to make the books exciting. She loves story time now. We do a lot of work with letters by showing her various videos and playing games with letters and letter sounds. This is a developing skill and we are trying to go about it the same way we did with our older daughter.
I can confidently say that she knows her ABCs and is starting to learn to identify beginning letter sounds. I am desperate for her to be fully literate as not only will it have a direct impact on her communication skills, it will also improve her quality of life and allow her to learn and study along with her peers. I can’t possibly write down everything we’ve done here, but one thing I found incredibly helpful was the Emergent Literacy course through Rett University.
Here is a video of Ava using her Tobii to comment while we read one of her favourite books:
A Final Note
This year of learning to communicate has been tough but also very rewarding. I want to also make clear that I haven’t been able to do all this alone- I have a lot of support from my family and some amazing therapists we have met along the way. There have been days (and there will continue to be days) where I doubt I can rise to this enormous challenge of teaching Ava to communicate and wonder how she will possibly be able to be fully communicative given all of the challenges that go along with Rett Syndrome.
I read and hear people talking about all girls with Rett being severely cognitively impaired, how they think the girls are not capable of communicating and it’s tough to keep on going, especially if we’re having a bad day. However, when I look at Ava and watch back some of her videos (another perk of documenting) I can see the progress she’s made. I can see how smart she is. And I know I owe it to her to try my best to ensure she reaches her full potential.
I would love to hear more about what other parents are doing to get their daughters communicating! Please leave a comment below or consider writing a guest blog post for Army of Us!
Useful vocabulary to learn:
AAC: Augmentative and Alternative Communication PAS: Partner Assisted Scan Core Words: High frequency words that are applicable to all topics. Eye Pointing: Looking with intent Eye Gaze Device: Computer that is controlled via the user’s eyes (the eye acts as a computer mouse) Dwell: The amount of time the eye needs to pause in order to make a selection Robust Language System: provides access to core words and a large variety of ‘fringe’ or theme words, and allows the user to create grammatically correct sentences Phrase-based: selections are phrases rather than individual words PODD: Pragmatic Organization Dynamic Display Modeling: Going through the motion, showing SLP: Speech Language Pathologist CDA: Communication Disorders Assistant Alternative Pencil: Providing a way to write not using a pencil (making selections in an abc flipbook, using an eyegaze keyboard…)