When Janey had her IEP meeting in December, I requested that she be evaluated by a technology specialist, to see if she would qualify for any kind of technological help in communicating. I had kind of hoped she might be able to get an iPad or something like that, which I had read was really helping some kids with autism, but I realized that it was unlikely she would be able to demonstrate that she could use one. We had a meeting Thursday to discuss the results of her evaluation, and as I expected, the evaluator didn't think Janey would be able to understand or use a multi-button device. She did think Janey would be helped by a single button recording device, that could be programmed to say something like "I need help!", and in fact Janey learned to use one very quickly while the woman was evaluating her. It's not that Janey can't say that phrase, but to get her to actually say it at appropriate times is extremely hard. The button can take away a step, make it less personal and easier, and can also lead to Janey saying the phrase verbally. So I was okay with that suggestion.
The evaluator was very good. She hadn't met Janey before, so came in with fresh eyes. That was eyeopening and to me, kind of depressing. She said what I know to be true, that we should keep in mind that Janey can't think or understand at nearly the level some of her talking makes it seem like, that just because she sometimes uses complete sentences doesn't mean she understands complete sentences, and that if we need to get a point across to her, we should state it very simply, or maybe use pictures. I don't think the pictures work for her, but maybe. I asked her the question I had been asking myself---how to I respond to repeated delayed echolalia? She actually had an answer, and a good one. She said to treat it like you would treat a baby babbling, because that's what it really is...playing with the sounds and intonations of language, even though it might sound like more sophisticated speech. So not so much respond to the actual words, but to the intent, which is to try to communicate. Make a guess at what she is trying to actually get across, and respond to that with short utterances and encouragement.
It was all good information and accurate sounding information, but it still of course depressed me a little. I think a lot of my hopeful feelings about Janey are at a low ebb lately. She doesn't seem very connected lately, she is crying more, she is more babyish---more affected seeming. She is continuing to do things like take off her seatbelt, she is peeing on the floor all the time, she is taking off her clothes all the time---and I am truly often feeling like she doesn't get what I mean at all when I try to stop her. Maybe because she isn't capable of understanding reasons or cause and effect. I lecture her for taking off her seatbelt, and she repeats back the right things, but she doesn't really make the connection----"seatbelt off equals Mama mad". And so if the urge strikes her again, she just does it again, as she does all her other things that are dangerous or destructive. I feel like I am waking up every day feeling a bit of a sense of dread. I love Janey so much, and I am so scared for her and her future.