Being able to run around outside must make such a difference in James' life. This weekend, he was able to independently open the door and run around on the porch. It must be a great feeling, especially when he has to ask for almost everything. We were at the beach too. While it was more crowded than usual, the huge sand piles blocking the entryways are still there. We enjoyed climbing up and over, seeing the top of the fence posts at our ankles! Later, James refused to play wiffle ball. He wanted to "stim" with the bat in the trampoline (a new desire that we quickly denied). Unfortunately, our refusal ended the backyard session that day, as James could not be persuaded or distracted into doing anything else. If he couldn't use the bat inappropriately, well then, he was going to sob.
Monday is always a rough day for James. We get up early to make the trek from the beach to school. My poor worker bee's day doesn't end until after an afternoon Occupational Therapy session. Unfortunately, the center has pushed his appointment back 15 minutes. No warning or explanation, just a reminder phone call about James' 3:30 appointment. It didn't dawn on me until we were going to the center that his time is 3:15. We pick James up at school at 2:30. Our house is a half an hour away from school and the pediatric sensory gym is about 40 minutes away - meanwhile they are 10 minutes apart. Our current solution is to drive around for an hour, using some of the time to let James listen to his therapeutic listening program (30 minutes, 2 times a day). Unfortunately, James, who cannot tell time, starts to get agitated and wants to go to the gym. We manage to find a parking spot (not readily available at this time), but the damage is already done, James is a complete agitated MESS. He takes off his coat, hangs it up, takes off his socks and shoes, stowing them under his chair, gets his communication board and presses "I want" "to jump" and "I want" "to play." Correct and appropriate - but now the therapist is late, talking to the previous mom. A completely understandable situation but not for James who does not understand why the time was changed or why, when he is doing everything as he is supposed to, he can't go jump on the trampoline. He is sitting nicely in a chair, waiting and shaking, tears streaming down his face. I am right in front of him, repeating over and over again how we have to wait. Luckily another therapist tells James he will take him to jump. It calms him. He has a decent - but not great - session. This gym has recently moved and expanded. They are in dire need of structure and an office manager. Instead, they have two co-owners, who are therapists with a full client roster, who micro-manage and rely on freelancers and part-timers. Someone needs to be accountable and keep things running for them. I have left phone, email and a written message. None of which has been received by James' therapist (one of the owners). I am considering dropping Monday afternoon. It is getting warm. We can replace the chaotic session with outdoor time, maybe a organized sport? Why should I have to work so hard to get my kid back from what they destroyed?
This afternoon, the power was cut without warning as the electrical company worked on our block. Our landlords weren't home to admit them, SO they cut the power, without so much as a note on the door. James had just started watching his was first movie of the day, and was not pleased by this turn of events. I waited for about fifteen minutes, jumping through hoops to distract and entertain him. This was extremely hard because he couldn't listen to music either (I have now sworn to buy emergency batteries for his little CD player). Wait a minute - I see the workmen breaking down their area. Are they leaving? I abandon my child and run outside. One man launches into an explanation of the problem. After about five minutes, I stopped him (as politely as I could) and told him I have an autistic child - who I have left alone - who does not understand what no electricity means and is extremely upset. For brevity's sake, please don't explain the problem, tell me how to rectify the situation. If they can get in the building, they can get my power back up. Okay, it's after the school bell, and I luckily catch my landlady on the mobile. She can get home in 40 minutes. I run and relay the message and the workers say they will wait. As much as I bitch and moan about my landlords, the husband and wife team really came through for me: she with her speedy return home, and he with his numerous phone calls to get to the root of the problem. I am humbled by their concern. My agitated mom "act," (i need a better word as I was not acting!), also helped as, during their work, power was restored to one part of the apartment for James. Big sigh. Crisis averted! Did I mention Dad is gone for another lengthy day and not returning until we are asleep?
Thank goodness more warm weather is predicted tomorrow. I am pooped and it is only Tuesday!
