Another crossroads

Dh will be at a crossroads soon. He’s mostly met his initial goals at TIRR Outpatient Services (TOTS) and they will discharge him by mid-October. His speech therapist believes she's reaching the end of what can or should be done with M one on one. Instead, his growth and development requires working in groups and under more of his own initiative. Among the many things I don't understand is how, if a person is improving all the time, and a payor will pay, therapy ends. M's fastest improvement they say will be in these first two years, so I'm eager for therapy to continue. At the same time, I recognize that the real world, as strange as it is and unlike the one we knew before, has come. Therapy will end at some point and living on our own in this new world begins.



I’m trying to get him back in a community re-entry program. He is not ready for their vocational rehabilitation track. Still others are there to prepare for returning to school (there are some teenagers and early twenty-year-olds there). Though M had been in Challenge in early summer, we left because he was not cognitively ready and he had run into his insurance policy’s limits on PT and OT, 20 combined hours. If Challenge staff thinks he’s still not ready, or if they want him but insurance will not pay, I'm not sure what our alternatives are other than go home. Some other possibilities are the Transition Learning Center in Galveston, a residential program, or return to TOTS.



M continues to amaze and frustrate me. His major physical limitations stem from his brain's inability to recognize the left side as capable of bearing weight. He walks, but excruciating slowly and balance on sloped or uneven ground remains precarious. I'm determined to go on our son's cub scout camping trip this October, so I've had M practice getting in and out of the tent. He can, for the first time, get up off the floor unsupported. He needs coaching to do it, though.

The cognitive limits also are perplexing. M probably could pass the bar again now. But if you ask him today if he had therapy, he'll reply, "No, not much" even though he spends three half-days a week in therapy.

I do leave M alone for about 45 minutes in the morning walking the dog. M has a list of chores (dress, make the bed, shave, that sort of thing). He can do about half independently, but invariably will go off track and will not self-correct. Much of my energy is not spent caretaking (feeding, dressing, and so on), but in coaching. "What are you supposed to do now? Look on the board. What have you done? Use your eyes to verify...." (Often he says he's done things he hasn't and says he hasn't done things he has.)

M made lunch a few times this week. For the first time (not including breakfast peanut butter toast), he made a meal entirely independently, with no one in the room coaching him. He offered grilled cheese, I accepted; and he made grilled cheese sandwiches. A few days later, he offered again to make sandwiches, tuna. I said yes, but not tuna. Mark quickly prepared the bread, then took 45 minutes to find and use lunch meat. I kept trying to understand out what he was having difficulty with. It turns out he could not get past tuna. He knew I said no tuna, but couldn't switch over to a new thought. He knew where the other lunch meat is, but couldn't let go of the other thought to get it.

This week marked a special day for our family, an anniversary of sorts. When I asked M what he might do to help celebrate the occasion, he said make dinner reservations and take me out to dinner, which is what we always used to do. But I had to point out to him that he hasn't picked up a phone to make a call in seven months and that he has been specifically told he can't drive. Given that, I ask, what else can he do? He says again, make reservations and take you out. That's, in other words, inflexibility in thinking as well as a lack of self-awareness.

Another important component to what makes a person is their emotional life. M generally cooperates, has a pleasant demeanor, and has impulse control, mostly. But no empathy, which turns out to be not so much a character trait, but a fairly sophisticated cognitive skill. You must recognize what the other person is feeling, then identify based on your own experiences what that feels like and what might be an appropriate response. Then you have to act on that knowledge to indicate a reflection, recognition, or attempt at amelioration in what the other person is feeling. When others are sad, myself included, M has no empathetic response, no initiative to reach out or comfort. In addition, because he lacks much self-awareness, he doesn't feel or express loss, from missing work for example or doing things with me and the kids. He's oblivious to all I'm doing to keep our own little ship afloat and how his injury has thrown all that on me.

It's been seven months. M lives, talks, walks, even contributes to housework. I know God works all things for good, but the good now for me seems to be the refiner's fire. I know he is with me.