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I will never know exactly what happened on the drive home from Open Mind School’s new location in Menlo Park. I know the driver, Mari, showed up 30 minutes late with a window taped shut. It took 45 minutes for the taxi to make its way over the Dumbarton Bridge and into Fremont, despite minimal traffic. Somewhere in Fremont, the driver stopped.
My daughter, in an unfamiliar city on an unfamiliar route with an unfamiliar driver, lost it. She began screaming “LET ME OUT!” and kicking the door. I imagine it looked pretty similar to the taxi meltdown a week earlier at my house. Someone (the driver? a bystander?) called 911. Fremont sent two police officers from its mental health crisis unit who thought Katie was having a psychotic episode.
Sitting in the boring Oakland workshop, I noticed my silenced phone “blowing up” with texts and voicemails. I excused myself and headed once again for the bathroom. Most of the numbers were unfamiliar, but I recognized the District transportation coordinator. I called her first. She told me Mari needed to speak with me.
“Isn’t she driving?”
I called one of the unfamiliar numbers and Mari answered. She handed me off to Officer S, who explained that he wanted to 5150 my daughter because she was having a meltdown in the cab. For those that don’t know, 5150 is the California statute that is used to place out-of-control individuals on a 48-hour hold in the psych ward. It is typically used for individuals with drug or alcohol addiction or various mental health conditions, often requiring medication.
Officer S launched into an explanation of the 5150 process. I cut him off. “I know what it is,” I said. “But I don’t think 48 hours in a mental health facility is going to change my daughter’s autism diagnosis.”
Dead silence on the line. Then, “I wondered about that.”
“Did the driver tell you this was the first day at a new school in a new city on a completely different route with a new driver? Or that she was 30 minutes late picking Katie up?”
“No,” he said.
“Your daughter is really out of control,” he said. “The driver is in way over her head.”
“I can imagine, but Katie’s not out of control in the typical sense. She’s having an autistic meltdown which this taxi company keeps triggering out of sheer ignorance.”
“I’m afraid to open the door. In case she bolts into traffic.”
“Katie’s not a bolter, but it’s hard to say what she might do after being trapped in the cab for this long.” I took a deep breath to calm myself down. I was furious, but screaming at a police officer was not going to help either me or Katie.
“I’m not going to arrest the driver if she tries to drive off, but I have to say, as a mandatory reporter, the conditions in this taxi are not safe. Your daughter could fall out the window!”
I could tell Officer S was upset. Was there something truly wrong with the window? Or the cab in general? I asked him to describe what he was seeing. Afterward, I was reluctant to explain that the situation appeared to be nothing new. The taxi company had been transporting my child in this manner for nearly a year.
“It’s abusive,” Officer S said. “As a parent, I’m telling you, I would not let them transport my child.”
“Between you and me, this is the last day they are driving my daughter.” The threat of a 5150 incident had pushed me over the edge. “I’m done.”
“Good,” Officer S said, relief apparent in his voice.
“I’m sure my school district will push back. Will you talk to them if I need help?”
“I’d be more than happy to. You have my number on your cell but I’ll text it to you as well.”
Clearly this officer was bothered by the transportation conditions Katie and I had been forced to endure.
“Like I said, I won’t arrest the driver, but I don’t think it’s safe for her to transport your daughter. Can you come get her?”
“The problem is, I’m in Oakland, trying to finish a meeting. Plus I have no idea how long it would take to get there.” I paused, thinking. “Let me see if my sitter can go to Fremont.”
“I’m in no hurry,” Officer S said. “Call her and get back to me. I’ll wait here until someone arrives.”
I phoned Melissa and we quickly put together a plan. Melissa would drop off her kids in Pleasanton and then drive to Fremont. I would meet her and Katie back at my house.
I finished the workshop and headed home, unsure what I would encounter when I arrived.
To be continued….
Until next time,
The following week, school was closed as Open Mind School (OMS) moved from Redwood City to Menlo Park. There were a few days of makeshift classes, but without a sensory gym, I didn’t think Katie would fare well, so I kept her home. I figured a few more days without a taxi could only help.
On Monday morning, Mari, the female driver, returned. I told her NOW she could go to Menlo Park. She smiled at Katie. “We’re going to have a good day, Princess.”
At 9:45, OMS texted to say the taxi hadn’t arrived. It hadn’t arrived by 10 or 10:15 or 10:30 either. Now an hour late, I was worried. What had happened?
I spent a good chunk of the morning on the phone with the school district, taxi dispatcher, and OMS. This was becoming a habit—a habit I didn’t want to continue. At 10:45, the taxi finally arrived. Katie was twitchy and annoyed, but otherwise okay. She transitioned to the new school without blinking an eye. Apparently this is one advantage of jumping between so many schools and districts over the years. She had a good day.
After so much transportation-related chaos, I debated whether to drive to Oakland for a mandatory social services workshop. Melissa, tutor/sitter extraordinaire, convinced me to go. She would meet the taxi at my house and watch Katie while I was gone. Plus, she reminded me, it was the only day that worked for both of us. It was now or never.
On the way to Oakland, district staff began to call. Apparently Katie had once again popped the window seal and the taxi company wasn’t sure how long it would take to “fix” it.
“You mean tape it shut? That’s all they did last time.”
The District didn’t know. They wanted my permission to use a harness so any vehicle could be used to drive Katie home.
“She won’t like that,” I said.
It wasn’t a long-term solution, but if a harness got Katie home at a reasonable time, it would be worth it. At least I hoped it would. So I reluctantly agreed. Once I arrived in Oakland, I sent the District an email to document my approval and crossed my fingers that all would go well.
What else could I do?
At 2 p.m., in the middle of my workshop, OMS texted to let me know the taxi hadn’t arrived. I called both the District and the taxi company. No one seemed to know where Mari, the driver, was. “We had to fix the window again,” the dispatcher said.
“No, you didn’t. I gave permission to use a harness this afternoon.”
“Plus all you do is put tape on the window. That takes ten minutes tops.”
She mumbled something and said she would have the owner call me. He didn’t. At 2:30, the taxi finally arrived at OMS, its window once again taped shut.
Katie cheerfully climbed in. After that, I’m not sure what happened. I know it took 45 minutes for the taxi to make its way over the Dumbarton Bridge and into Fremont. After that, things went south….
To be continued….
Until next time,
No surprise, the taxi driver had problems on the bridge, which frankly, serves him right for waiting in the cash line. I wondered if this had been an issue in the past. Whenever my daughter had a problem, it usually occurred on the bridge. Hmmm.
My phone was ringing all day, with one transportation issue after another. They told me the taxi might be late picking Katie up. I passed the information along to OMS.
The taxi was late. Then later.
A therapist named Heather arrived at my house at 3 p.m., 30 minutes after Katie should have been home. At 3:45, a county social worker arrived. He had planned to observe Katie during therapy and interview me as part of a program improvement project. By 4 p.m., Marina at OMS was getting concerned. She needed to send staff home and the taxi still had not arrived.
The taxi pulled up at OMS shortly after 4 p.m. Katie was well regulated and in a good mood when she departed for home.
The social worker left. Heather waited until her three-hour session was nearly over. Still no Katie.
It was close to 6 p.m. when I heard pounding on the front door. Expecting Katie, I was surprised to see Heather, panting. “The taxi passed my car and Katie is in full meltdown, screaming ‘LET ME OUT!’ at the top of her lungs. I threw my phone down and ran to help you.”
The taxi pulled up, and sure enough, Katie was screaming and kicking hard enough to shake the vehicle. Heather and I ran to the curb.
“What will she do when we open the door?”
“Not sure,” I said, wanting to cry. I’d rarely seen Katie that far gone, and never when she was trapped in a confined space. It wasn’t pretty. Not pretty at all.
“Will she attack you?” Heather said.
I shrugged. “More then likely.” I honestly didn’t know what would happen, but I knew it was going to be ugly.
“I don’t want her beating you up.”
“I don’t either, but it’s better than letting her scream inside a taxi.”
Heather tapped on the window, getting Katie’s attention. “Hey, we need to work on calming down.”
Katie kicked harder and screamed louder.
I sighed. This would not end well. Plus the window, the reason for the three-hour delay was haphazardly secured with clear packing tape. What the hell? Packing tape? They couldn’t even find duct tape?
“Katie, can you rock yourself?” Heather demonstrated on herself.
Katie complied, but rocked herself so violently I feared she might hurt herself. “Can you give yourself a squeeze? A big, long bear hug.”
This worked better. We had Katie breathe and count to ten. After two cycles, Katie was definitely calmer but not yet calm.
“Okay, let’s count again, and when we reach ten, we’ll open the door.”
We counted slowly, and as we reached ten, Heather ducked around the cab. So much for wanting to protect me.
I opened the door, unsure what would happen. Katie climbed out calmly, but without her backpack. I asked her to grab it, and she scowled at me before leaning back in to retrieve it. She gave the taxi a half-hearted backwards kick and shut the door. The driver, a new gal I’d never seen, continued to spew customer service platitudes, thanking me for my patience. Heather, Katie, and I all ignored her.
Katie considered kicking my car, it didn’t. She considered kicking the front door, but didn’t. She did nothing to either Heather or me. She went inside, tossed down her backpack, and flopped on the couch.
“Excellent job calming down,” I said. Heather echoed my sentiments and Katie smiled wanly. We were all wiped out.
Heather departed once again, and Katie and I had a quiet evening. “I’ll fix this,” I promised, even though I had no idea how.
To be continued….
Until next time,
I’m excited to announce that I will be reading at the Civic Center Library in Livermore California as part of the Library’s Friends, Authors, and Arts Series. The event is called An Evening with the New Poet Laureate and will be held on Thursday, October 19, 2017 from 7 to 8:30 p.m. I will be reading selected poems from my book, Across An Aqueous Moon: Travels in Autism (Finishing Line Press, 2016), as well as new work. There will be time for questions after the reading. Books will be available for purchase.
As always, it’s an honor to have my work featured, but particularly nice to have it happen in my community.
If you are in the area, please plan to attend.
Until next time,
Open Mind School (OMS), the wonderful, magical place that embraced my daughter Katie last fall after years of struggle to find her an appropriate educational placement, is MOVING! The long awaited move to Menlo Park is finally happening—or will once the City of Menlo Park approves the necessary permits. Until then, the staff is talking about change and the benefits of being flexible rather than having the dreaded “rock brain.”
Everything is packed, and the non-essentials relocated to the new building. School was supposed to start this week at the new location, but despite Marina’s best efforts, the approvals aren’t in place yet. At least two city staff assigned to the project have left—which has to be some kind of record. Ever creative, Marina is continuing to work her special brand of magic even without a building. This week school is occurring in parks and community centers stretching from Redwood City to Pablo Alto. If only the taxi company that transports Katie to and from school were half as good at problem solving.
When Katie transferred to OMS, I made peace with the fact that a long commute would be part of the package. Because no other children from our district were traveling to OMS, Katie would travel alone, in a taxi. (Katie has taken a taxi to school since third grade, so this is now the norm.) Most days the trip to Redwood City took 55 minutes, give or take. The new location was roughly ten miles closer, and theoretically at least, involved a shorter commute. We all thought this would be a great thing for Katie.
We clearly didn’t fully grasp the hellishness of the Silicon Valley commute.
I wondered if we would have problems on the first day back at school. Our long-time driver, a wonderful man named Ken, disappeared without warning, replaced by a woman named Mari who insisted on calling Katie her “little princess.” The company had provided the wrong address in the wrong city. She had the wrong pick-up time as well. Sigh. I corrected the information while Katie waited patiently. Mari got Katie to school about 30 minutes late, which wasn’t surprising on the first day. The return trip had some issues as well, but on the whole, I thought Mari was trainable.
The next day the dispatcher called to say the taxi had broken down and would be “at least an hour late.” Usually this means considerably more than one hour, so I prepared Katie for the wait and informed the school. To my surprise, the regular taxi (unbroken? quickly repaired?) arrived exactly one hour late, but without Mari! The new driver, a Middle Eastern man who spoke excellent English but took notes in Arabic, also had the wrong address, in the wrong city. I corrected his misinformation and once again gave detailed directions.
I asked if he would be picking up Katie as well. (This has always been the case.) He said, “I don’t know who’s getting her, but it won’t be me. I agreed to take her, but I’m coming off a graveyard shift. If I wait to take her home, that would be a double shift and I already told them I wouldn’t do another double shift this week.”
I discretely scanned the car for signs of caffeine or an energy drink and saw nothing. I wondered if he was alert enough to make the drive, but Katie was already an hour late for school so I decided to let that go.
The driver peeled five $1 bills from a thick roll.
What the hell, was he giving me a tip for my excellent directions?
“I’m getting my bridge fare ready.”
This gave me pause. Who pays cash on a Bay Area bridge anymore? In the interest of time, I told Katie I loved her and would see her after school. But the cash stuck with me.
To be continued….
Until next time,
It’s August, and while many kids are going back to school this week or next, my daughter just finished summer session. (Open Mind School operates year-round.) Katie has a three-week break before school starts up again.
I’m embracing this out-of-sync-ness. I’ll be using my time to relax, read, and do some writing. Katie will probably be doing as little as possible. We both plan to enjoy the last days of summer.
In September I’ll be back, blogging about my unplanned life. Whatever you are doing, feel grateful for what you have, and enjoy the beautiful summer weather. I’ll see you soon!
Until next time,
Last week, my daughter Katie attended Camp Arroyo, which is where the Exceptional Needs Network (ENN) holds its summer camp for special needs children in conjunction with the Taylor Family Foundation. This was her third year. The camp may be a short three days, but ENN really goes all out, providing two bounce houses, a swimming pool, service animals, petting zoo, popcorn and snow cone machines, ping pong, a host of special visitors, and a yurt devoted to art projects. They also had horseback riding, rock climbing, a zip line, and a dunk tank. Plus a dance on the final night.
Katie had the amazing Ashley Angeles as her aide again. She and Katie really took to each other last year, and the two picked up right where they left off. As we carried Katie’s gear up the hill to her cabin, Ashley asked if anything had changed in the past year. “She’s getting a period now,” I said. “I don’t think it will happen at camp, but I packed some supplies, just in case.”
Ashley nodded. “We’ll be fine, whatever happens.”
We reached the cabin, and Katie picked out her bunk—in the same location as the past two years. She climbed up and spread out her sleeping bag and blankets, aded her pillow, and flopped down. “Bye, Mommy.”
“You don’t want a hug?”
“Go bye bye, Mommy.”
Ashley and I laughed. “Enjoy your time off,” she said.
I walked back to the car reflecting on what a difference two years makes.
The next morning Ashley texted that Katie had gotten her period during the night. Damn, I texted back. That’s the worst timing ever.
No worries, Ashley texted.
The nurses thought Katie had cramps, so they administered ibuprofen. I worried camp would be spoiled by this turn of events, but Katie didn’t miss a beat. Both she and Ashley had a great time. Ashley reported that Katie made some new friends and let the other kids dunk her over and over in the dunk tank. She rode a horse, petted a goat, did the zip line, and ate nonstop. On Friday night, she danced so much that she was awarded the long distance dancer award!
Once again, my daughter didn’t just survive, but truly thrived at summer camp.
As for me, I watched a ton of movies on Netflix, wrote, and slept in every morning. On Friday, Nate and I went out for dinner, saw the movie Wonder Woman, and browsed at a book store. I had hoped to spend time with a new significant other, but unfortunately that didn’t happen. Even so, it was good to get a break from the demands of parenting.
As was the case last year, after three days away, Katie didn’t want to come home. This year instead of unpacking her duffle bag, she mostly cried and asked to stay. But she was happy to see me when I arrived for pick up (and possibly a little homesick). She hugged me, then hugged Ashley goodbye.
“See you next year,” Ashley said as we left.
We stopped at a park to swing, then headed home. Katie slept for much of the afternoon. By Sunday she had recovered and was asking to return to Camp Arroyo. A year is such a long time to wait….
Until next time,
I was pretty excited too. (Still am.) Unlike most single parents, I don’t have an ex-spouse/partner who provides me with free and convenient childcare on a regular basis. As a result, I get very little time off from parenting my autistic child, and when I do, it almost never involves more than a few hours here and a few hours there. Plus it’s not cheap. To have a three-night break is an extraordinary and priceless gift.
I’m off to play….
Until next time,