CM Conference

Sitting with a lovely warm latte- I can now reflect on what has been a hectic but great day. Today I was at the Communication Matters National Conference where I represented the DVOICED girls and gave a presentation on our week of awareness.

Whilst preparing for the presentation I started to look through our various social media outlets and it was lovely to read over everything! And I thought it was great our experiences are caught in time- oh the internet!

I have to say I was extremely excited and nervous to be speaking at such an event- and without the girls by my side I was feeling especially anxious! With 6 other presentations going on the same time as mine- all which looked incredibly interesting, I thought I may be speaking to myself! So I was amazed when my room was pretty full- of real people! Who were really interested in what I had to say, and what we, as a group had achieved.

My presentation went smoothly thank goodness- but it was the questions and discussion after with the audience which I was really pleased with. People are so passionate about AAC and the awareness that is required that our five minutes for questions turned into good 15 minute chat!

One question I was asked was about my opinion of the lack of public awareness and how to fix it- what an important but MASSIVE question!  My honest opinion was ‘I have absolutely no idea’… the concept is so huge it’s quite frightening. I hope one by one, we as a can slowly but surely spread the word.

It turns out that five little students with one little idea has really made a difference, people have seen what we have achieved and I think they have been inspired… I met people today who follow us on twitter, who had heard about us from their friend at work- It was quite weird to meet people who had followed our campaign but we had never met!

Today has been brilliant- but the caffeine is needed- I am exhausted!

As always, sending speechie love!

Amy.

A quick reflection….

I simply cannot believe it has been 5 months since we began our campaign… It fells like such a long time ago-getting used to our aids, preparing posters and gathering readers! This week I have had a horrific case of tonsillitis and lost the use of my voice for 4 days, instead of being in a  huff because I couldn’t order my new hubby around to make me tea- I got out my new tablet and improvised my own AAC (much to his delight!). With new technology and its ever progressing industry, AAC is becoming so much more accessible… Its wonderful to see!Although it was almost 5 months since our campaign, I can honestly say that week has changed my outlook- I always believed that communication was a right and not a privilege, but I feel that I have an understanding that goes deeper than the words of a text book- if you get the chance, please take the time to step in someone else shoes- you’ll never believe what it can bring. Keep up the good work guys- let’s show everyone that Speech and Language Therapy Matters!

 

Amy :)

‘Speak for Yourself’ app inspiration

The ladies from Speak for Yourself very kindly shared with us their motivation to create the app that I used throughout No Voice Week:

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When people ask us what drove us to create Speak for Yourself, it’s difficult to pinpoint any single driving force. The short, true answer is that we created it because we wanted to make a clinically sound language system available and accessible to as many people as possible. It started with the premise that everyone should have the right to communicate. Communication allows people to build relationships and participate in life. Everyone has something to say. 

We are speech-language pathologists and Augmentative and Alternative Communication (AAC) Consultants who have spent years working strictly with children (3-21 year olds) who use AAC. Prior to creating Speak for Yourself, we completed AAC evaluations for students in New Jersey and then worked with the students and teams to support language development and device implementation strategies. We would also help parents complete insurance and funding paperwork and work with districts and device companies to secure a device for the student. Of course, we’re in New Jersey where insurance typically covers durable medical equipment. The rest of the world is not so fortunate. In many parts of the country and world, insurance coverage for communication devices is not an option. The process was time consuming, (at the minimum a few months…sometimes years), but when everything worked as planned, the students had a voice, and we breathed a sigh of relief and shared in the students’ success. Then we were able to get to the real work…implementing AAC and teaching the child to use the device. 

Unfortunately, everything doesn’t always work as planned. For some nonverbal students, we would work with the teams and support them through the trial and paperwork process, but something would go wrong. The insurance company would deny coverage stating that a device is not “medically necessary.” The district would say that a device and accessories totaling around $9,000.00 was not in the budget. Parents would lose their job and insurance coverage. Whatever the reason, some of the students, no matter how successful they were, no matter how much their behaviors had decreased since they had access to a communication device, did not get their own device. 

Those are the students who drove us to create Speak for Yourself. We would go into those same classrooms to work with another student and a former student would come over to us. She would look in our bag. She would use the “new” student’s device to tell us something that she remembered from the time that she had a voice, and her face would light up. The classroom staff would direct her to her next activity, and her smile would fade as she walked away. Eventually, she stopped interacting with us. We would walk into the classroom and she sat quietly in her cubicle. Stuck in her own mind with the ability to communicate, but not the tool. Heartbreaking. 

When the iPad was invented, we saw the market shifting. Slowly at first…a student here and there, but we saw the potential. Districts who were not able to buy $9,000.00 devices budgeted for iPads in bulk. Districts and parents were asking for our help to reprogram apps. We began to realize that it was the only chance some children were going to get to have a voice. We reprogrammed…extensively. We started talking about what we would do if we were designing our own app…and we haven’t stopped since! 

Many of the features in Speak for Yourself came from watching what children did naturally when they used AAC. For example, when a button didn’t speak when it was touched, they would hit that same button again. As it turns out, that is an innate behavior and it is true of anyone…if you push a button expecting something to happen and it doesn’t, you automatically push it again. That is the reason that the core vocabulary word on the main screen is in the same place on the secondary screen. Also, we noticed that we could reliably get most students to access two buttons prior to having the word spoken. When they were required to access 3 or more buttons, we would lose some of them. When we designed Speak for Yourself, we organized it so that the user had access to 14,000 words, with no more than 2 touches to say a word. There’s no complex page navigation and motor planning remains consistent throughout the user’s lifetime. Once they learn to say “drink,” that is how they will say it for as long as they use the app. This allows language to be cumulative in the same way that it is cumulative for verbal children who are learning language. You say “drink” now the same way you learned to say it as a young child. 

We designed the blueprint of Speak for Yourself as a PowerPoint presentation, and we looked at each other and knew that it would work and make a difference in someone’s world. Communication is a basic human right, and if someone has a pulse, they have the right to communicate their wants, needs, thoughts, ideas, and feelings. We have seen that glimmer in a child’s eye, the relaxed smile, and the weight being lifted off of them the first time they are able to express themselves. We know, without a doubt, that your world changes when you can Speak for Yourself. 

Heidi LoStracco, MS, CCC-SLP and Renee Collender, MA, CCC-SLP
Speak for Yourself LLC

 Using a communication device during no voice week

 

Using a communication device during no voice week has really opened my eyes to how it feels to communicate using alternative methods. At first it was the little things that I noticed, like waiting at the bus stop with fellow passengers. Usually I would chat about the weather or even just say hello, but I found myself avoiding eye contact as I knew my device would have to be unpacked in order to engage in conversation, and I felt there really wasn’t time to go into the explanation as to why I was using the device. To be honest I felt that I didn’t want to put others or myself into an uncomfortable situation. This was the case on the bus when an old man spoke to me just before we were about to get off, I didn’t feel able to get the device out of my bag again and start to try to respond with little time available, so I simply replied using my voice. I know that I am lucky to have the option to do this. If I had no option but to use a communication aid, I can imagine it could feel quite isolating if you are not confident in yourself and your ability to communicate effectively.

I used my Dynovox during lectures, and found that I did not ask the questions I wanted to, because by the time I had typed in the question I had missed the next part of the lecture and he had moved on to another point. I am sure if I had alerted the lecturer to my need to ask a question he would have waited for me to do so, but that would have focussed all the attention in the room to me and that was the last thing I wanted. I also attended a planning meeting but I was hesitant to use my device as there was a limited time available and I did not feel confident that I would be able to communicate effectively.

We had a very positive experience on Friday evening when we went out to dinner and ordered our food and drinks using our devices. The waitress was really patient and interested in our communication aids, and we managed to place our orders successfully. Later on we were lucky enough to meet up with Lee Ridley who is a local comedian and communication device user and we had a really fun and informative night. At was a great end to our no voice week, and I am so glad we participated in this event. I have learned so much and have had a real insight into the life of an AAC user.

Lorraine

1VoiceNE

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On Saturday Katy and I attended our first 1VoiceNE (North East) event, where we met some really wonderful people at the Hancock Museum, Newcastle. 1VoiceNE provides networking and support for children & families who use alternative communication living in the North East of England. It was really rewarding to see AAC in action and was an inspiring end to No Voice Week.  Katy and I accompanied the members on a tour of the museum looking for items which were scary, beautiful, stripy etc. and it was great to see that they were able to communicate their ideas and preferences using either communication devices, verbal communication or gestures. We then all regrouped to discuss what we had found. Patience was needed but everyone was able to join in and share what they had discovered. It was a really positive and inclusive event, involving the people who were using AAC and their family members and friends, we were so grateful to be involved.

They already have their next event scheduled for Saturday 29th June, and you can visit their Facebook page for more information: https://www.facebook.com/pages/1-Voice-NE. 

One of the parents there explained to us the difficulties around devices and legislation, and the continuing availability of a device that you have become used to, it was something that I had not considered before but something which is really important to be aware of. A communication device is only functional if the software is being maintained and the device is continually supported. It seems a real shame that some devices are rendered useless due to legislation.

Thank you to all at 1Voice NE for making us feel so welcome at your event, and good luck with your next.

Jenette

 

 

Looking Back…

As the week draws to an end I sit and still have so many questions. I thought this week would give me a lot of answers- how it feels to be a user of AAC, what people’s awareness is of alternative methods of communication, and will people care about what we are trying to achieve? To some extent I feel like I have had those answers- Being an AAC user for a week was frustrating (and I have to say I didn’t use it all the time!) and peoples awareness is limited at best. Now for people caring about our aims I  have to say it has been astonishing the amount of support we have recieived from far and wide- and I mean FAR! we have had viewers from Australia, Israel and the USA to name a few! … It’s been amazing! But then I feel that some people aren’t quite sure what we set out to achieve and I get the feeling that perhaps they think to themselves ‘why is that girl who looks so “normal” standing and using a computer to speak’… And I think that is where I get so many more questions. Why do people assume that a communication difficulty is a one size fits all! Why do people think less of you because you have difficulty using your own voice? why do people laugh at you when you are trying to communicate? It’s simple… they are not aware of the diverse society they live in, they are perhaps a little afraid of what they do not understand. As a trainee speech and language therapist, I feel that it is our responsibility  along with other health professionals- to educate those who are unaware of the diverse nature of communication… our aim to bring awareness of AAC i feel has been successful . but in the grand scheme of things – its just a drop in the ocean! I truly hope our efforts have opened some people up to the world around them, and if you are fortunate enough to already be aware- i hope we have inspired you to be a part of this much needed campaign  Its much bigger than the five of us- and with everybody supporting the campaign hopefully we can then really put a dent in the big fat ocean!

 

Thanks for reading,

 

Amy

Day Five of No Voice Week (Newcastle University)

As the week goes on I am becoming increasingly more withdrawn and exhausted from communicating with gestures, my communication book, and my iPad app. It just takes so long to get my point across!

 Although, everyone has been wonderful (I stopped and chatted to my son’s teachers today who were very interested and explained that this week the Early-Years children had been learning to use Makaton) it is still taking a lot more effort and is becoming increasingly frustrating.

 Today we had arranged a stall outside of the student union at Newcastle University to help introduce AAC to other students. We were hoping that we could show our devices around and explain how we are using them and the Giving Voice campaign message; ‘communication is for everyone’. The staff were wonderful, helping us set-up and accepting our alternative communication methods. It was a nice sunny day (if a little cold) but we were full of enthusiasm.

 We walked into the passing crowd with our devices and my message was ‘Would you like a free cup-cake?’….who could refuse!? However, the majority of people were not interested in listening. I was sure to make eye-contact with people as I approached and smiled as I ‘spoke’ but the general reception was confusion, rudeness and ignorance. A lot of people pretended they hadn’t seen or heard me and some giggled and talked about me as they walked past. One girl even called me a ’freak’. The fact that these were fellow students on a University campus behaving so ignorantly really shocked me. I thought these educated people would be aware of diversity and be accepting of people using different methods of communication, but this was not the case. There were (thank goodness) some people who walked by saying ‘no, thank you’ and ‘sorry, I don’t have time’ which is understandable and some people who interacted with us and came over to our stand to ask what we were doing and why, which was wonderful. Opposite us was a ‘bake sale’ who were able to draw many more people than us, and our cakes were free!

Feeling particularly frustrated at one point after using my device to say ‘would you like a free cup-cake?’ to a couple of girls on campus and being looked at, obviously heard but completely ignored, I decided to use my voice to ask why they chose to ignore me, and asked if my communication device put them off speaking to me. They replied that they hadn’t seen or heard me but then later admitted that the voice was ‘weird’.This event more than anything over the course of the week gave me an insight into what it must be like to use a communication device.

There were some positives, some people were very interested, we had a lovely visit from Liz Panton and her ukulele and we met a lovely passing speech therapist who offered lots of words of wisdom to us SLT’s to be.

This event made me more determined to change people’s perceptions of AAC, and to help users of AAC to strengthen their ability to communicate so that they don’t have to feel ignored. I will be contacting the University regarding equal opportunities and asking how they accommodate users of AAC and what they are doing to change perceptions and aid inclusion. 

Jenette

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