My mind wanders during the quiet of the day, sometimes in rhyme…
“She will not talk with too many people around,
she will not talk when I sit her down,
she will not talk if she’s put on the spot,
she will not talk, not, not, not.
However,
She wants to chat when we are in the car,
or on the go, or in an ice cream bar.
She will talk when given more time,
and she likes to joke and likes to rhyme.
She likes to talk when she has something to say,
and wouldn’t it be nice if more people were this way?
She may be quieter than the average girl,
but when she does speak, it’s profound.
I’ve learned to listen and to learn to wait.
The words will come and it doesn’t matter if they are late.”
The best time to process thoughts is when I’m alone. Ninety-nine percent of the time, I’m thinking how to encourage Jessie to express herself more. Most of our conversations, she won’t sit still and would only linger long enough to see where a new word was added before exiting stage right.
I’ve been chided if I dared to compare her to other AAC users and over the years, I’ve learned to not pay heed to people’s expectations. Success only comes when I follow her lead. Jessie has her own voice and it’s her choice as to how and when she wants to use it. She learns on her own terms and I need respect her style.
As much as I would love for her to build long, perfect sentences, Jess tends to use one to three words. Even though I encourage her to be verbose, she prefers to be succinct.
For now, this is who she is and that is fine.
PS- don’t worry, I won’t give up my day job to be a poet…
Mary, you always give me hope and encourage me through writing about your life with Jesse.
Good things do come in time, when they are ready, however, we have to presume competence and keep asking the questions. There’s so much more going on inside than they share with us 🙂 School had me feel like we were going to run out of time and I felt like we were playing beat the clock if she didn’t do certain things. I shouldn’t have worried so much. She’s coming into her own and time isn’t against us 🙂
My daughter is staring learning PECS BOOKS, do you think it’s a good idea just shift to IPAD APP or have to learn PECKS BOOKS first?
It’s always good to have low tech available and use all forms of communication, however, there are many reasons to use an AAC device.I will get back to you before the day is through.
We started with low tech picture boards (they were either PODD or inspired by that system). I think schools do this because it is the easiest to begin with and because many don’t have a lot of AAC experience (especially when Jess was in her early years of school) so it is their starting point. Then so many don’t believe the child is ready for a device. They have all sorts of “reasons”…symbols too small, they don’t have good fine motor skills or maybe they just don’t think the child will understand. Parents rely on the professionals because what do we know about AAC?
I’ve learned that there are no barriers to using a device and every reason they gave us turned ou to be myth. Jessie had very poor fine motor skill and her eye-hand coordination was severely compromised (due to her Strabismus), however, the device provided motivation that a picture board cannot. When they tap a word, they are getting immediate verbal feedback. This allowed Jess to self-correct. When she finally tapped the word she wanted, she would stop and look at who she was talking to. Just like a child plays with their voice, they need to explore the AAC device and tap all the words. While they are doing this, they are learning motor planning. The words stay in one place and they learn their location. This is one of the biggest problems I have with the PECS. Since the words are pulled off a board (usually velcro), the words aren’t always put back in the exact same location and this doesn’t allow for automatic motor planning.
As for a book, it’s okay in the beginning but it isn’t a flexible system. Once you make the board of words, you’ve basically given them a script and limited what they can say. It also requires much more support because if they tap a word and you don’t see them, it’s like a tree falling in the forest and you don’t hear it. If they build a large vocabulary with these books, they can end up the size of phone books. They are so cumbersome and the support person ends up finding them the page they want them to talk about and in order to communicate they need a communication partner. In my opinion, they need to take ownership of their words and be free to talk about what they want to talk about.
For Jessie, hearing the word was extremely motivating and she eventually compensated for her eye-hand coordination. (we begain with a full-sized iPad with a keyguard which forced her to isolate her finger, she also worked on toys that forced her to manipulate her fingers which helped her use the iPad…our favorite was a gumball machine. Picking up the coin, putting it in the slot, cranking the knob, opening the door for the M&M reward…things like that). Within 6-9 months, Jess had transitioned from a full size to a mini iPad without a keyguard.
Not all AAC devices are the same. Jess had limited success with her first system. I was constantly being asked what was she interested in so they could program the words. Turns out adding/opening new words is also very motivating for her. Unfortunately, ALL of these other systems have multiple layers. Jess got to a point when she had too much language to remember all the layers to find the words. When she used the device less and less, she was the one they found fault with and not the system. It should have been a huge red flag to the SLP’s that maybe it was the AAC system no longer met her needs.
By sheer luck, we found SFY. Initially, I thought the words were too small. However, on the day that Jess trialed, she found the word exceptional, tapped it and looked at me (no one ever thought she’d want to say that word, much less program it in, much less understand what it meant). It was then I realized that Speak for Yourself was unlike any other AAC I had ever seen.
Jess has been using this for six years now and has never stopped talking, never pushed her device aside. Her frustration and behaviors that stemmed from not being able to express herself disappeared. What SFY was able to do was provide consistent motor planning (words have only one place), only two layers which makes it faster to find your words and you can’t get lost in the system because when you tap the second page it brings you back to the home screen. We started with a dozen words, now she uses about 1,500. SFY has nearly 5,000 preprogrammed words and she has access to them all when the feature Babble is open. If she can’t find the word because it isn’t available (we didn’t open it yet), she can search for it herself in Babble, this was how she found exceptional). She also has 250 customized words that we added. Should also add, that Jess only had 5 months of school left when we found Speak for Yourself so have not had the support from school. Just saying this so you realize how doable this is for you on your own. There is online support with ready help from parents and SLP’s.
I know you just asked about the PECS books but felt you needed to know that there is so much more out there. Jess does have a low tech picture necklace that she has used in emergencies and it’s good that she has that foundation, however, I would only use a picture system like this until you decide on what AAC device to go with. The iPad made AAC affordable. Laminating cards $$ adds up, cards get lost, etc. We still have a few in the house from years ago..lol
SFY has been life changing for us. It is an app you can support yourself. Once you understand how to build language (one word at a time and add one word more to what they are already saying), you realize you don’t need weeks, months of training to use the AAC.
Finally, Jess used over a half dozen low and high tech. I had been afraid of changing thinking it would confuse her. Again, I was wrong. She was able to figure it out and adapt easily. You just need to give them language that is motivating. Not just core words, but fringe words. Talking should be fun, no matter what age you are 🙂
I had a local Angelman parent tell me that her school was using PECS and said her daughter wasn’t capable of using a device. She fought them. They said either she uses PROLOQUO2Go or nothing. She fought them. They didn’t think she was capable. She now has SFY and the school is surprised at how well she is doing, it wasn’t expected. They didn’t presume competence. No one can learn unless we are PC. The real issue was they won’t admit is that they didn’t know SFY, they were comfortable with PRoloquo and that is why they suggested it. Evaluations are only as good as the evaluator. This seems to be a universal issue.
Bottom line, don’t put limits on your kid. They will surprise you given the chance.
Hope this helps… 🙂