Why is communication so difficult? It may appear to be a simple concept, but it is not. When spoken, we rely on a back and forth conversation style to get our complete thoughts out. When written, a few short sentences are not necessarily going to give the reader enough information to understand the point of reference. Another barrier is when people can’t see your facial expression, body language or hear your tone of voice. Holy crap, this is why I struggle! So, if this is how I feel, given the complexity of Jessie’s speech issues, I can’t imagine how she must feel when she is trying to be understood.
Jessie and I communicate in much the same manner. We both are matter of fact. When asked a question, we don’t beat the horse to death in order to get our point across. This is true when she speaks and true when I write (I do type fast and sometimes talk way too much). What is flummoxing to me is that Jess is often underestimated and people tend to read too much into what I’ve written. Jess does have one clear advantage over me, she can read people, whereas, more often than not, I don’t pick up on what a person’s true intent is.
All any of us can do is share our story, compare notes, see who has an edge and see if that method works. With regard to choosing which form of AAC your child should use, this ultimately is decided by the child. The parent’s job is to seek high and low as to what is available, then they may have to take a leap of faith. When we were looking for a voice for Jess, the evaluation about her capabilities had been completely, absolutely and totally wrong. It was said her inability to isolate a finger and her distractibility prevented her from being able to use the iPad. There is a thread of truth here. The communication systems she had used in the past either didn’t have enough language or they were too slow compared to her non-verbal abilities. Jess had no patience. She also couldn’t isolate her finger. However, what the professionals weren’t able to factor in was her desire to speak. Jess did struggle, it was not easy, but not only can she use the mini-iPad, but she can navigate my iPhone. She is making purchases (I had to lock her out with a 2nd code because she figured out the first one) and she is presently teaching herself how to text. She may have been seen as a junk car, but don’t be deceived by the body, this girl just went from zero to 60 and no one, except for her SLP, saw this coming.
The original purpose of this blog was to share our story in hopes that other parents stop and question what they are being told and to encourage them to seek out information. Be wary of absolutes or the phrase “because this is how it has always been done”. Also, do not confuse my enthusiasm for our AAC app to imply anything more than to say that this is a well thought out, complete and open language system. It may or may not be a fit for your child, this is for you to find out. With that said, think twice about using an AAC device that has layers. Jess has access to 1,000’s of words in two taps. As vocabulary builds and language becomes more complex, it gets harder to navigate layers. This is why SFY is an easier AAC system to navigate because it utilizes our motor planning memory.
No, I am not an authority on low or high tech AAC, nor am I as educated as the groups of people that I’m trying to learn from. My daughter is a testimony to the unimaginable possibilities. To say the learning curve was frustratingly slow, would be an understatement. Now I find it rather amusing that my daughter and I each share communication struggles. We both march to a different drummer, yet we both are finding our way together.