Tuesday, October 14, 2008


We have had many bus drivers since Soren started riding the bus two years ago. Our first was our best. His name is Phil and he was a seasoned driver. He showed up on time, he was friendly, and he really liked Soren. He liked him so much he stuck with Soren's route through that first summer even though he could have been moved to an easier one.

But the last September, Phil was moved to another route. Still he checks on Soren every time he's at the school. They are buds. So we got a new driver. Actually we probably had a number of them until we got Ebony. Ebony was sweet. She loved to hear Soren's laugh when she drove, which for some reason he did often when he was with her. She watched as our ramp was being built, anxious to see it finished. Loading Soren up was much more difficult before the ramp. She was also looking forward to the red curb because people were parking into my driveway space making it really hard for Ebony to get the bus in. But just as the ramp was finished and the curb was being painted, Ebony moved back to Ohio due to the economics of L.A.

Next we got Mr. Grouchy. Now I don't know Mr. Grouchy's name because he never told me. He was clearly bitter about being a bus driver and let it show. I could barely get a hello from him and I'm a friendly gal. When he returned to pick Soren up after Spring Break, I asked if he had a nice vacation. He grumbled at me quite angrily that he didn't have a break--he had to work--as if this was my fault.

Mr. Grouchy trained a number of people to try and take over the route. First there was Mr. Dimbulb. Mr. Dimbulb had a tendency to trip over the bus lift as he was backing Soren onto it. Often he couldn't work the lift because he had trouble maneuvering the buttons while using his reading glasses.

The first day Mr. Dimbulb was on his own, without Mr. Grouchy, he showed up 15 minutes early. He was lucky I was ready with Soren because, had it been bath day, I wouldn't have been. I told him he was REALLY early. I tried to tell him that, while this was fine, he had to tell me BEFORE he showed up early. He acted like he couldn't understand my English. He then tried to tell me that this time worked better for him--that he was changing the schedule. As he left, I really questioned sending Soren off on the bus with him. I called the bus dispatch to tell them about my interaction, asking if they could find someone who spoke Spanish to make it clear that he needs to tell me if he's changing the schedule. The folks there told me 1) That he's not allowed to change the schedule and 2) He speaks perfectly good English. He couldn't have gotten the job without that. So he was totally hosing me pretending he couldn't understand or talk to me!

That afternoon he was LATE. Really, really, really late. So late I was freaking out fearing that I had made the worst mistake of my life letting him take Soren that morning. I called dispatch to see what was happening. Turns out the bus lift broke down and then had to get him a new bus with one that worked (would have been nice if they called). Hearing this I was pretty confident that the lift was just fine. I had seen Mr. Dimbulb fail to work that lift so many times I figured he just thought he broke it. He finally showed up with Soren, safe and sound.

The next morning Mr. Grouchy was back driving the bus. I asked what happened to Mr. Dimbulb. Mr. Grouchy said he was reassigned. Yeah, right.

Next we had a young gal who was nice enough and showed up on time more or less. Whenever Mr. Grouchy had to substitute for her, I got the feeling he didn't like her. She was gone when summer school began and Mr. Grouchy became our driver for the summer. That was a long, grouchy summer.

This fall, a nice guy--let's call him Mr. Nice Guy--showed up to take over Soren's route in a big bus. The first day he was late. But every day after that he showed up on time and dropped Soren off by 3:00. He was a seasoned pro, he had a good sense of humor, and he liked Soren. I was really happy with this change.

But good things just don't last in the bus driving world. Last week Mr. Nice Guy was training another new gal to take over Soren's route. She drives a small bus. She's also very nice. But, being new, she is doing everything VERY SLOWLY. She's not on time with pick-up or drop-off. Once she gets Soren on the bus it takes forever for him to get his chair tied down. And when she drops him off, we're in the house a good 5 minutes before she finally leaves.

The glorious part about this new bus driver happened yesterday. As I mentioned in my previous post, we had 5 feet of our curb painted red so that nobody would park there. This way the bus would have room to pull in and load up Soren. Well, yesterday some joker dropping off his kid at Moira's school decided to park not only in the red all the way to the edge. I thought of going out and explaining the situation, asking him to kindly move his car. But I just wasn't in the mood to get yelled at or had eyes rolled at me.

Well, while he was gone, the bus pulled up to load up Soren. The way she had to pull up totally blocked this car from getting out. I took Soren, the New Gal got him on the bus, and then the guy returned to his car.

And I just sat at my window and watched. And smiled. The clock was ticking. I don't know what the New Gal was doing. She had to be tying Soren's chair down with ropes and chains and belts. That bus was parked there for a good 5 to 7 minutes. And that guy in the car was trapped. It was so satisfying. He had nobody to blame but himself. His eagerness to do something quickly, my red-painted curb be damned, only cost him a bucket of time. I was never so happy to have a driver move so slowly.

The lack of motion was poetry in motion.


Thursday, October 09, 2008

Eye Sight Update

I took Soren to his neuro-ophthalmologist today and we got a really good report. Dr. Borchert was really impressed with the progress that Soren, overall, is making. He noted that he like a different kid compared to 6 months ago. Much more alert and not fighting him. He was also impressed that Soren actually took interest in watching TV, something that has developed quite recently.

On the eye front, I told Dr. Borchert that we've noticed Soren looking at us from a distance more. However when we bring him close, he loses interest. We thought he might need glasses for this. But after checking Soren, Dr. Borchert said that it doesn't seem that Soren needs glasses. Instead, he thinks that Soren's cortical visual impairment is causing the problem.

In basic terms, we all have blind spots in our vision. Due to Soren's seizures (and possibly one of his previous meds), he has more blind spots than usual. So, from afar, he might be able to see things better because he can see through the holes. But up close, things may get blocked.

The good news is, these holes can fix themselves as Soren continues not to seize and things start working better in his brain.

The bad news is, we think Soren had one of his night/waking seizures this morning. Aaron heard him making noise and just thought he was talking in his sleep. But when we went to get him up, he had that same old stiffness that's been gone for over 3 months. Now, his PT sessions have been extra rough and I know they've been stretching him really hard. But putting the noise Aaron heard and the pain together seems to point to more seizures. And while this is a bummer, at least he didn't continue them into the day. So we're going to watch this and see about increasing his dose of Clobazam if they continue.


Tuesday, October 07, 2008

Amy and the ADA

I've been meaning to write about this for a while, but have always ended up writing about something else. I never thought I would be making use of the Americans with Disabilities Act, but use it I have and with good turn out.

We live close enough to walk to Moira's school. The trouble was, when walking with Soren, it was tricky to get across the street. Where the crosswalk is, there was a very high curb. High for the kids walking. Even a little high for my short little legs. So when I walked Mo to school with Soren, we would have to 4-By it off the curb. This was quite hard in Soren's old wheelchair/stroller. So on off-hours at school, I would not use the crosswalk and would zip Soren and I across from one driveway to the other. This was kind of dangerous because the street is a busy one. I was even given a finger wagging by the school secretary one time when I did this.

So, one day I was picking up Moira and came across another mom who was walking her son in a typical stroller. She too had to 4-By it and commented on how much easier this would be if there was a slope instead of a curb. I knew, with Soren's disability, I could actually get something done about this and help everyone crossing the street to get to or from school.

I did a little web search and found the ADA person to call in our city. I left a message stating the situation. Mike called me back the next day with the most sincere voice and earnest interest in getting this situation solved. Within a week, workers from the city were marking up the sidewalk in preparation for what is officially known as a "curb cut." Mind you, I called about this in around October of last year. During Christmas break of last year, the workers came and, by the time school was back in session, the curb cut was done and crossing the street was easier for everyone. Especially for me when we got Soren's new heavy-duty wheelchair.

The second issue came up regarding Soren's bus pick-up. We live close enough to the school that people who are dropping off or picking up their kids often block our driveway. On garbage day, people would even pull my trashcans up onto the curb and then park blocking the cans. It got to the point that I was having to police activity myself, yelling at parents who blocked my driveway. One time I came home during Kindergarten pick-up and was totally blocked. So I just sat there waiting, blocking the street, until the woman returned with her child. What amazes me is how innocent people act, as if they didn't know it was a driveway to someone's house. Or the people who actually get mad at me for calling them out (and I'm always polite).

Now, I'm sure parents did this since we originally moved in. However, I never knew about it because I worked during the day at an office. But now I freelance from home. And I have to get Soren onto the bus in the morning and off of it in the afternoon. This is decidedly hard when cars are blocking my driveway where the bus needs to pull to the side.

So once again I called Mike to see if I could have a Blue Curb painted for handicap access only. My request was forwarded to the right department and soon I got a letter of refusal--our city no longer did Blue Curbs. I got on the horn and tried to find out if this was legal according to the ADA. Turned out that lots of cities don't even have blue curbs. So I called Mike again and explained the situation more. He helped negotiate 5 feet of red, no-parking on our side of the driveway (which we share with our neighbors). This way the bus--a small bus at that time--could pull in without issue.

Now for the most part, people behave and don't block the red zone. But not always. And the universe is getting its sweet revenge on those not following the rules because now, instead of riding a small bus, Soren's bus is HUGE! It can't pull over at all due to all the cars. So it just blocks the street. I just smile and get Soren on and off the bus as quickly as I can.

But I must say that the city's response to both issues were quite quick and painless. We are really lucky to have the ADA!