Max has had a rough couple of days. And when Max has a rough couple of days, we all have a rough couple of days.
I have been trying to pinpoint WHAT exactly is making his life so difficult lately, and how we can make that thing go away! It seems to be an impossible task right now, with the answer just out of reach and constantly morphing. It's like trying to grasp water in zero gravity. I can't seem to find all the magical little floaty spheres, and they don't fit together in a recognizable form.
While there are many things that make summer hard, one of the obvious common denominators is communication. Or, rather, the lack of.
I know that being able to better communicate his wants and needs would greatly help reduce Max's frustration level (and ours, too!), but I don't know how best to proceed for him to be successful. He signs some things. He "says" some things (we understand; others don't). He "sing-songs" some things (specific repeated intonation, pitch, and rhythm help decipher a phrase -- but again, it only makes sense to us). He points to some things. He nods yes or shakes his head no at some things. He can push buttons or select a picture or perform a meaningful response....
...but he only does these things spottily, and I don't completely understand this. Is it when he feels like it? When he remembers? When he's in the mood? When he's motivated? When he's prompted? When he's calm and focused? When it's in his internal vocabulary? (Answer: d. All of the above)
Why is it so random? What is the key here??
Home life is much less predictable than the school day. At school, Max knows his routine and can communicate and perform quite successfully within that structure. But summer at home? He doesn't have the knowledge base for predicting or communicating about the variety of things we do. He's often just left in the dark, not fully comprehending where we are going, or what is expected of him, so even if he can provide some input, it doesn't really count.
What's more, transitions have always been hard for Max. If he's "off", he will clam up, rub his seams, tell me "shh!". He regresses, resorting back to sensory input and total dependence, and tries to shut down. When he's "in a good place"? Well, magic can happen.
Those really are the phrases I use, by the way, -- "Off" and "In a good place", because I don't know how else to describe it. When he's off, he's off. He could be hungry, or tired, or frustrated, or overstimulated, or understimulated, or sick, or bored, but much of the time I can't tell, so I just say he's off. And when he's in a good place -- well, I vaguely list the opposite of those things. He had a big meal, slept really well, had some (but not too much) physical activity, got lots of 1:1 attention, was very focused, woke up in a good mood, etc etc etc. I know that there are numerous correlations in there somewhere, but I don't know the exact cause-and-effect formulas!
I would love to know what's going on in that head of his (and for the rest of the world to know, too), and, clearly, having an improved communication method is a critical piece of the puzzle.
Max is going in for his weekly speech therapy session today. We changed the appointment from his usual time, because the therapist has borrowed a Tango! communication device for the month. I'm so ready for him to have some kind of assistive device. Is he?
We borrowed a tango! (the communication device pictured at the top of this post) just about exactly one year ago, and he wasn't ready for it. He was completely obsessed with the On/Off button, and just couldn't find his way past it to get to the good stuff. The device costs around $8,000, and though it is sturdily built, I was more than a little nervous being temporarily responsible for it under Max's incredibly rough treatment. Perhaps he would have progressed over the month, but after about a week and a half, we simply tucked it away. I ended up mailing it back, little-used, feeling very guilty we didn't find a way to make it work for him, and incredibly disappointed.
This time I am fully aware it's a long uphill climb, and am pretty realistic in my expectations. I know that it still might not be the right time (or even the right device!), but I am getting excited.
I just KNOW there is a way to make it all happen. I truly believe there is some key that will help us reach Max, and a parallel key to help him reach us. It's out there somewhere, and I'm ready to begin the search.
The tango! website has a really neat emulator you can try from your home computer that gives an illustration of how the device is set up, and how to navigate through the levels. If you would like to learn more, go to http://www.blink-twice.com/ to browse around or click here to go directly to the emulator page. It's pretty darn slick!
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