There is not a day that goes by that I don't think about Sophie's lack of reliable communication. While I know we are doing the best we can given the circumstances, and we have wonderful support at the school, I still think if there isn't anything else I could offer her to help her express herself.
There is no doubt in my mind that Sophie understands much more than she is able to express. I also think her thoughts are probably quite complex but she is limited, horribly limited by her lack of ability to voice what goes through her mind. Her personality is such that after a couple half-hearted attempts she gives up and moves on, doesn't get frustrated. You can almost feel the shrug and a "nevermind". But- we do mind! We want to know what she is thinking so badly...
She is learning PECS but that system is limiting in itself. It is very good for requesting tangible objects and she does well with bringing us cards of food that she wants. It is good for her (and us) to be able to at least show us food preference, or make choices. However, when she turns to us while watching Thomas, eyes aglow and intently peers into our eyes voicing "upupupup" or "buh buh", PECS doesn't help because she doesn't want "apple" or "grapes" or even "cookie" (although she won't say no to that of course). No, she wants to share some excitement or joy with us and we miss her point. We give her lots of positive feedback of course but it's like fumbling in the dark, because we don't really know what she's trying to say.
Another problem with using the PECS binder which is not so much an autism issue, but a general preschooler issue is that whenever she is presented with it, she flips to the "junk food" page and starts requesting food. It's like you sat down your toddler and said "do you want to talk about trees, or grandma or park or do you want a cookie?". What would a sweet-toothed child reply, every time? Of course with a typical child you could not mention the cookie and they would turn their attention to the other topics. But a child like Sophie, if we removed the picture of the cookie, she would go for granola bar, or grapes, or blueberries- in other words she would never want to talk about anything else unless it was on her terms- she wants to talk when she gets an idea and when I go and bring out the book her idea is lost (not that I have a picture for it anyway, since I don't know what it is) and is replaced with a desire to ask for cookies.
On Facebook I got some suggestions to look into sign language. While I like the idea of it a lot (minimalist, no clunky binders, no iPads), I just don't see how she would do it. Sophie is very particular (understatement?). While she has very precise fingers and is "able" (in theory) to execute fine movements, the truth is- she doesn't. She uses her hands very rarely and for specific things only- she is very tactile and likes to sift through sensory bins, her brother's hair or peel the outer layer of her diaper. She never uses her hands to let's say feed herself with a spoon, hold a pencil, even a toy. She never did any sort of finger rhymes, and even if I grab her hands in mine and take her through the motions, she just lets her hands go limp and doesn't try to imitate the motions. But I will speak to her speech pathologist and see what he thinks about it. I might learn some baby signs and see if she would be receptive to the idea.
I am always thinking about technology as literacy is my ultimate goal, but truthfully am quite overwhelmed by all that's out there. We did meet with an AAC clinic and have another meeting in February. It's my impression that we have many more meetings than any tangible action and it's really up to me to implement any system that I want to try, just like I made all the PECS myself. Of course I realize there are no magic solutions, just a lot of hard work and a child like Sophie who is generally calm and easy going but very elusive, is hard to work with.
I don't have a good ending for this post because this is how I feel- doubtful, overwhelmed, not quite sure which way to proceed, where to go from here. I just know Sophie has a great potential but she needs to be able to communicate to realize it. And I want to make 2014 the year she gets just that- a voice of her own.