Updated: Oct 9, 2021
Since October is AAC month, which stands for Augmentative and Alternative Communication, I figured it would make sense to write about how Stephanie communicates. As I wrote in the first blog post Stephanie was diagnosed with apraxia at the age of 2. When she was a baby she babbled, blew bubbles, baby talk, and nothing there that gave me any signs that I should worry about her language. By the time she was 1 year old she had her 5-8 words, the usual "mommy", "daddy", "hi" "bye", with a few others thrown in there. But unfortunately she lost those words by the time she was 18 months. I am not going to turn this blog into a discussion on autism regression and a debate on vaccines but if I have learned anything this past year it is my lack of trust in the pharmaceutical companies. So whatever the reason for Stephanie's disabilities there is no going back and changing things so we are where we are and doing what we can to help her communicate with the language she has. Not to say we don't continue to work on language because we do. It is an everyday, all day long, automatic response whenever she is talking. I am always making sure she is using all the sounds she can and communicating effectively.
When Stephanie first got her diagnosis of apraxia it was something I had no clue about. It is hard to make at such a young age and a lot of speech and language pathologists won't diagnosis until closer to 4. But apparently Stephanie's was severe enough that it was pretty apparent at age 2. We tried private speech and in home birth to 3 speech but neither were successful We traveled to Marquette University and worked with the graduate students one and one on a speech program they have there. Again, no success. It wasn't until she was 4 and we started ABA , Applied Behavior Analysis, that we started to see some progress. There are people who think ABA is abuse because it is teaching kids alternative behavior for what they are doing that isn't socially acceptable. That instead of teaching new behaviors, society should accept the current behaviors. But for us and for Stephanie ABA was exactly what she needed. She is a kid who needs people to be VERY consistent. You can't give in at all or she will remember and take advantage of that. That's not to say we didn't have issues with ABA but we had fantastic therapists that we are still in contact with to this day. They were always trying new things to get the most success out of Stephanie.
We tried some sign language but with some fine motor delay as well those had to be adapted. We tried PECS, which is Picture Exchange Communication System, and that didn't work for her even though she is a visual learner. The idea of PECS is that a child will bring you a picture of the item they want since they can't verbally say it, and then they would get said item. It could be a toy, food, book, etc and they would have a book of certain items and be able to choose from that of what they want. For Stephanie she would just look and page through the pictures and not use them to communicate. It was the beginning of her love of cards and pictures. It was a repetitive action that she loved but didn't help with communication.
The ABA company I choose had a speech and language pathologist (SLP) as the owner. She was able to teach the therapists the best way to teach Stephanie how to talk. We had to start with sounds first. She wasn't a fan a having them move and manipulate her mouth but the way ABA works is that they do trial after trial after trial REPETITION is key. She is not going to learn because she is around other kids. She needs to be taught each sound and then just because she has a sound she needs to learn how to put that sound in a word with other sounds. Even having the "t" sound doesn't mean she would be able to say "eat" because now it's at the end of the word and she may have learned it at the beginning. . It was all very hard for her. She is also stubborn so she is sometime her own worst enemy. She still does not have all the sounds. Stephanie still loves doing her ABA "work" and her sister Emily is a therapist in training. Emily does so well teaching her and learning how to adapt so many things according to the way Stephanie learns. Emily grew up with the therapists in the house everyday and she would be an example many times when they were trying to show something to Stephanie.
After about a year of ABA we were able to get an iPad with a communication program called Proloquo2go. It is the idea of using pictures to communicate wants and needs with a voice. We have been working on it for over 10 years. With Stephanie's fine motor and cognitive delays it is still a work in progress. There are times she gets her "talker" when she can't recall the words she wants to say or when she is being difficult and is choosing not to talk. But then she needs to be able to find the words/pictures on the screen. There can be as many folders as you want and only so many icons can fit on each page. And since she can't read she needs to remember where everything is. So most of the time I need to have an idea of what she is trying to say so I can help her find the right pictures. Thank goodness for the search function. I can't imagine how frustrating it would be to want to say something, not being able to come up with the words, then not being able to read and just having to look at pictures to find your voice. I try to remember that all the time when she gets upset. Once she has the right pictures the program will say the sentence for her.
Currently, Stephanie talks about 3-6 word phrases. It is not all adult formed so sometimes you need to have a context of what she is talking about to figure it out. She has always had a lot to say, understanding is the problem. I can probably understand Stephanie 90% of the time. And the more you are around her the more you learn "Stephanie language". It is scary that if she would ever run away or have to talk to a stranger she would not be able to communicate important information. Of course that information is in her talker but then she would have to know to get that out and be able to share with others.
Her speech therapy at school has attempted to help with the talker but we have yet to find someone who can help program it and teach us and Stephanie the best and most effective way to communicate with Proloquo2go. It is something I am always working on. The more she can communicate with everybody the less frustrated and upset she will be. And when Stephanie is happy, mommy is happy, and then the family is happy.