Anna's individual speech therapy ended in December. Her speech therapist recommended group social skills therapy to help Anna with her pragmatic language difficulties (officially Expressive-Receptive Language Disorder, where her receptive is better than her expressive). I have been unable to find a group that suits our needs, so we've been winging it on our own for the past few months. Then the speech therapist's report came last week. In it, she said that Anna's prognosis (a term I dislike) was good as long as she practiced speech and social skills in a group therapy situation. She said without group therapy, Anna's prognosis was only "fair".
Fair. Right now, Anna's outlook is only fair. That fact was hammered home over the weekend when we took her to a birthday party at a gym. Anna stood there white as a sheet, frozen, with a panicked look on her face, unable to deal with two dozen other kids running around and making noise and being entirely unpredictable. I don't think she breathed two words to any of the kids, not even her friend the birthday girl. She couldn't wait to leave. And even over the phone Anna is different. Tonight she got on the phone with my BFF's daughter (same age) and verbally ran her over talking about strange stuff - how she can make silly faces, how she can make up silly jokes. On the other end of the phone I could hear her friend say "What are you talking about? I don't understand." Even at this age girls want to talk about girly stuff, and Anna was stuck on something random and alienating to her listener. Nevermind facial or body language cues - Anna wasn't even getting verbal cues that were signaling her to change the topic.
Until now I've focused on getting Anna to a place where she is comfortable in her own skin and able to communicate her needs effectively to others. Now the focus needs to be getting her comfortable around other people (which will increase people's comfort levels around her). If her self-esteem is going to be worth anything, she will need to socialize. She wants it, but she can't cross that barrier that prevents her from being comfortable doing it or even knowing how to do it. There may be a social skills group forming for kids her age at a university starting this summer, and I can't wait for Anna to join. I don't want her prognosis to be fair, I want it to be fantastic.
As I was thinking through all of this, I ran across Anna's preschool exit interview. Three years ago Anna made great strides in her ASD-focused preschool - I was feeling great about her progress but the preschool coordinator pulled no punches. She told me how it was and how it was going to be for the foreseeable future, right through middle school (and probably beyond). I think I've blocked it out the past couple of years, not wanting to believe it would be as difficult for Anna as the coordinator said. But she was right. It will be hard, for a long time. Hard for Anna personally and as she grows older, hard for us to watch it be hard for her.
Below are the notes I took during that exit interview, 3 years ago. I'm surprised by how much of it is still spot-on to this day. And I'm feeling uneasy that it most likely foretells Anna's future. I try hard to deal with reality, and I try hard to change it when I can. Right now I'm feeling hung up on what Anna's future will look like and how much hope we can glean from the outline below.
Notes from preschool exit interview, April 2007
Anna needs a nurturing environment that will recognize and understand her need for routine and her need to regulate her emotions and arousal levels.
Anna’s vocabulary is not the problem, her communication deficit is that she has a hard time generalizing language to social situations.
Anna will benefit from a speech consultation at least once a month for social stories, labeling/recognizing emotions and body language cues, and social deficits.
Anna initially benefits from seeing as well as hearing concepts but does not need to rely on picture supports. Anna is able to memorize a picture and file it away in her brain for later retrieval. Her processing time is slower than typical children her age - as she searches for the picture associated with a word that is filed away in her memory, she will take longer to respond to questions asked of her.
Anna struggles with negotiating mutual attention and will continue to struggle with this for a long time.
Anna’s continued progress depends on her being in a supportive school environment. She will probably never function well in a class of 20 children. She will need supports through elementary school and a picture schedule for the first few weeks of every new school year until she memorizes the new classroom routine.
Anna will struggle with independent work but because of the language barrier, she will not ask for help. Distractions should be kept to a minimum. Her sensitivity to visual and auditory distractions will need to be addressed, as well as her sensory needs (taking breaks for whole body movement).
As Anna is progressing in school, we need to ask: how is she functioning socially in her environment? Is she functioning well, and why? If she is functioning well and progressing academically in a supportive environment, we need to consider keeping her in a place where she functions well, instead of rushing her to mainstream – where she may not function well either academically or socially and where she may regress in language, behavior and social skills. Mainstreaming is not always the best place for every child and we need to consider that mainstreaming Anna in a large classroom may not be the best thing for her.
Anna responds to a familiar adult first, then to familiar children. She functions best in a familiar structured environment first before being able to generalize to a new situation. We need to be aware of and supportive of the hierarchy in how Anna functions in different environments.
Anna does not talk much to other children but will play with them. Talking to children is very hard for Anna. She can’t read their body language and non-verbal cues. Anna needs to be taught how to ready body language and facial expressions. She needs to be in a consistent peer group as she catches up to her peers, which will take time. It will be helpful for Anna to have a parent run commentaries on what they see people doing and what people may be feeling in different situations (like at the playground).
Anna needs cues not only to talk to other children, but also to look at them while she is talking to them. When Anna communicates, she needs a response from the communicative partner for reinforcement. Anna needs to be in as a typical environment as possible so she can learn social skills from her peers. (Anna's current LD school) will be a good environment for her as it is has typical children from whom she can learn.
End of notes