Independence or Autonomy?

One goal that is often the main focus of parents, caregivers, and instructors of individuals with special needs is achieving independence. On the surface, it sounds like a fantastic goal. As a mother of twin 10-year-old nonspeakers and spellers, it is certainly something I want my children to achieve, as I worry about their futures once my husband and I are gone. It IS a goal that we should work towards, but there is a missing component that often gets dismissed. Let me explain:

I recently attended a training provided by my boys’ school for a new AAC device that they will be implementing for my one son, Noah (that is NOT Spelling to Communicate S2C, as they denied both my boys access to this method). They are implementing the Go Talk Now app on the iPad with customized images and words that he can press, and it will speak for him. Over the past few months, Noah has greatly struggled and has spelled to me multiple times that he needs a communication method. He had spelled to me that he was devastated that S2C was denied, and it made him feel worthless… At that point, I asked him how he felt about me signing off on the school’s recommended AAC device just so that he could have SOMETHING to use to alleviate some of the pain and frustrations he is having and to summarize, he spelled to me that he was okay with it, but he saw some issues with it. So here we are… implementing a device that will at least give him half a voice. Better than no voice!

Anyway,
Two sentiments I took away from our meeting:

1.The evaluator kept talking about how important it was for Noah to be INDEPENDENT on his iPad. She knows we do Spelling to Communicate (S2C) at home, as I was very clear about that from the beginning… So I assume she was emphasizing this for me… since Spelling to Communicate is criticized because a communication partner holds the letter board in a specific placement that enables the student to easily reach and poke the letters on the board in an effort to support and not fatigue the individual. It has been claimed that the words are not the spellers and that of the “facilitator,”… which has been proven false time and time again, especially once the individual utilizing the skill progression method of S2C becomes independent on a keyboard that sits on a desk in front of them with no one holding it. ASHA does not support the method because the individual is dependent on the communication partner to hold the board in front of them…

So then I analyze the Go Talk Now App that they want Noah on…

Assuming that no one will hold the iPad for him while he is making a choice because if they did that then they’d be doing the SAME thing as a communication partner for S2C… but I digress…
Let’s just assume Noah can have the iPad in front of him and he can click images for what he wants… The app is EXTREMELY LIMITED. It needs to be programmed with specific words – verbs, nouns, adjectives, etc… paired with images. There will be different sections he will need to find to click them in order to say what he wants… There will most certainly come a time when he will not be able to find the words to express precisely how he is feeling.

Let me ask you all something…
How much can you express yourself with the 26 letters of the alphabet?
The alphabet provides INFINITE POSSIBILITIES…
Instead of being limited to saying, “I FEEL SAD”…
You can choose to say, “I AM OVERWHELMED WITH POIGNANT ANGUISH”…
So when I think about the possibilities the 26 letter board brings, I see AUTONOMY.
I see the ability to robustly communicate one’s thoughts, feelings, wants, needs, theories, philosophies, intellect, etc…
Then I think… WHAT IS INDEPENDENCE WITHOUT AUTONOMY???
What good is it to be able to communicate if it is limited??
What good is it to communicate if it still does not provide autonomy over the way an individual lives their life?
I want my children to have AUTONOMY so that one day they can ACHIEVE INDEPENDENCE to the best of their ability. To find out what they want to be independent in…
Aren’t we all dependent in some way on someone else?
Aren’t you dependent on your significant other for emotional support?
Aren’t you dependent on your job for financial stability?
Aren’t you dependent on food to nourish and sustain you?
Aren’t senior citizens, paraplegics, infants, children, etc… dependent on another human being’s care for survival?
WHY can’t a nonspeaker have SUPPORT to hold a letter board so that they can have FULL AUTONOMY???

2. While in the process of customizing Noah’s device for music that he likes to listen to, the evaluator was explaining how we couldn’t use the album cover of Pink Floyd, which is a prism symbol, to represent Pink Floyd because she didn’t believe Noah could decipher between the album cover and a triangle. She believed that every time Noah sees a triangle that he would associate it with Pink Floyd…

Well, I put it to the test to be sure I wasn’t making assumptions about Noah’s level. I showed Noah the picture of the Pink Floyd album cover and asked him, “What do you think of when you see this image?” He spelled, “I THINK OF PINK FLOYD” I showed him a picture of a green triangle and said, “In one word, what do you think of when you see this image?” He spelled “TRIANGLE”. I think this is just a reminder that Noah is very intelligent. He has been absorbing information his entire life. His language is very well-developed, and he is ready to use his voice. Presuming competence will be instrumental in the success of his AAC device and his interactions with the people he works with.

Thinking of how both of these sentiments tie in together, we cannot claim that we presume competence if we do not believe that autonomy is a vital component in our successful journey toward independence. We need to support our nonspeakers in ALL ways that meet their needs, and sometimes that means focusing on AUTONOMY before working towards complete independence.

What is one way you can better support your learner to become more autonomous?

Alexandra Ponsica is currently an S2C Practitioner in Training. She is a mother to twin boys who are nonspeakers and spellers. Alexandra is very passionate about helping nonspeakers to learn to communicate through spelling and will start her practice “See Me Speak” in New Jersey shortly.