Day 766 - Jul 4, 2010

Today didn't turn out like I had hoped. First, we went to an outlet mall because Kevin wanted to buy some more jeans. We made it there, only to have found the Zoo York store had closed down since we were there last. We made the best of it and went to another of his favs, but he was trying to tell me something about sneakers and I couldn't understand. I guessed everything that I could think of, but I didn't hit the mark.

So Kevin got mad and we had to leave. When he gets frustrated, that's it - he goes to the car and we have to go home. So we drove the whole way up there only to leave within 10 minutes. Grrrr!

After that we came home and Kevin rested for a while and we attempted to go to see some fireworks. That didn't work either. We drove about a half hour to get there and ended up being in traffic (like normal because everyone is going to the same park) and after another 25 minutes or so of barely moving an inch, Kevin demanded we go home.

Truthfully, it made me mad. And then it made me sad. I do understand that he can't help his impatience somewhat, and I do understand his over-stimulation, but what in the heck is the difference between sitting in a car and sitting at home? Frankly, I am getting a little tired of life passing us by because he just won't even try. The first minute that something doesn't go his way - we have to go home. It is so damn frustrating. And really - it's just so sad for both us.

I talked to Mary about the fact that we haven't had any therapies yet and she told me to give her a week to see if the VA was going to get things started. It has been 6 months since Kevin had any therapy and we need to get rolling. I want behavioral therapy, I want cognitive therapy, I want PT, OT and speech. Kevin has slid so far backward since coming here and it's truly heartbreaking to see all the progress we made go down the drain.

As for the therapies - the behavioral therapy will make such a difference to how Kevin does handle things when they don't go his way. It will also help me to better know how to handle his tyrannical moods. The cognitive therapy will make a heck of a difference to how he thinks and comprehends. PT - I watched a video last night that I shot from the end of last year and Kevin was walking almost normal. Now? He is barely able to walk. He shuffles along and relies on the cane completely - whereas before, he was barely using his cane. He is MUCH slower now and I think it is truly sad. OT? We were supposed to have a botox treatment during the last surgery but couldn't because no OT was on board. Now speech - the therapist did come to our house a few weeks ago and she at least did call on Friday to set up an appt - that's a start I guess. But I just don't understand why it has taken 3 months to get this started. When the docs came to our house in the beginning of April they said they would get on it. SO WHERE THE HELL ARE THE THERAPISTS?????????????????

I don't know. It just makes me wonder where we could possibly go that Kevin could have EVERYTHING he needs. A group of great doctors AND all the therapies and special aides to help him have some sort of decent life.

And you know what else? It would be really great if I didn't have to bang my head against the wall to get all of these things. I'm getting really tired of always having to fight the system for his needs. Why can't people just DO what they say they are going to. Life would be so much simpler.