How will some of our adult children be able to function independently in the community if they are unable to drive a car or safely navigate the public transit system? How will they be able to get to work, doctors' appointments or the grocery store without having to rely on their parents or caregivers? Like many other parents with children on the Autism Spectrum, these are some of the many questions that I still needed to have answered if John Matthew was truly going to be independent some day. With John Matthew turning 20 years old in July, I knew that that inevitable "some day" was getting closer and closer. Once again, I found myself reaching for my hopefully indestructible "autism thinking cap."
Constantly seeking out resources over the years for families in my autism support group, I remembered referring many parents to the Regional Transportation Commission of Southern Nevada’s (RTC’s) Paratransit Service. Paratransit is a shared-ride, door-to-door program available for those who aren't able to independently ride on the regular bus system. I assume and hope that other communities also have this type of service available for their disabled members.
First things first, I called up several parents to discuss their experiences with the Paratransit's application process. After gathering the information I needed, I sat John Matthew down and explained to him that we were going to apply for Paratransit services so he would be able to get around on his own some day. This wasn't the first time where his dad or I tried to convince him that what we were about to make him do was going to benefit him some day. His unenthusiastic response of "Yeah, I know. You aren't going to be around foreverrrrr," made me realize how much I overused that saying. I have a feeling, though, that I am not the only parent who has repeated that many times to their adult children. It's a scary, but unfortunate fact. A topic I'll probably address in another blog post.
Well, I have to admit that my overall impression of Paratransit was very favorable. When I called to make an appointment, I was given a date for less than two weeks away. The woman who answered their telephone was so sweet and friendly that I could sense her smiling as she spoke. How rare is it to receive that kind of pleasantry these days... especially from a public agency?
Within five days of my phone call, we received a verification letter that confirmed the date and time of John Matthew's appointment, described the items that we needed to bring with us, and provided directions to their office.
Although I knew the many reasons why John Matthew wouldn't be able to ride on a regular transit bus, I hoped we would be able to prove our case to the Paratransit staff. One of my main concerns was that he had a very short attention span especially when his senses became overloaded. If you don't have sensory integration issues, you can't imagine how many things happen at the same time when you ride on a bus. There is the constant movement of the passengers as they get off and on the bus, people talking to and laughing with each other, the bus driver's ongoing announcements blaring over the intercom, and the loud squealing sound of the busses' brakes each time it comes to a stop. With all of that going on at the same time, I knew that there was no way John Matthew would remember at which bus stop he was supposed to get off. Then there was his severe social anxiety. From the time he was a toddler, he always became very stressed when he had to walk by someone he didn't know. He would either accidentally bump into them or knock something over in his path as he attempted to walk by them as quickly as possible to avoid looking at them. As we drove to the Paratransit meeting on that Friday morning, I replayed those scenarios over and over again in my mind. Definitely more "scary" circumstances that would most likely happen if he had to ride the public transportation system.
After driving for about a half-hour, we arrived at the Paratransit office. The same lady with whom we spoke on the telephone also greeted us at the counter. I could instantly tell it was her by the pleasant voice. And, yes, she was smiling. She took John Matthew's name and appointment time. Then she directed him to sit down in a chair in front of a blue screen and took his picture. We sat in the lobby for only about 10 minutes when another woman approached us and asked us to follow her. She told John Matthew to lead the way and instructed him on how to find her office. It was obvious to me that his functional assessment had already begun. Her directions were clear... walk down the hallway and turn right into her office at the end. When he hesitated by the first office on the left, she gently reminded him of her instructions and he continued to walk to the end of the hallway and into her office.
Surprisingly, the application part of the appointment only took about 15 minutes. The woman directed all of her questions to John Matthew who then would immediately turn to look at me after each one. Most of the time, I told him to answer the question because I was confident that he knew the answer. There was one tricky question that did stump him though. That dreaded, "What is your home phone number?" His face went blank. As the woman directed her glance toward me, I sheepishly explained to her that he always called me on my cell phone.... which he was then able to repeat its numbers to her perfectly. "We will have to work on him remembering our home phone number too," I quickly interjected before she moved on to her final questions. After we provided her with documentation of John Matthew's autism and attention deficit disorder diagnoses, she escorted us back to the lobby area.
Within a few minutes of sitting and people-watching in the lobby, another woman came up to us and took John Matthew by himself to perform an actual functional assessment. I'm not sure exactly what happened during the assessment, but I do know that it involved John Matthew ringing a bell when they arrived at a fictitious Taco Bell. At least that is what he told me when we got home. When they returned to the lobby, she told me that he did really well. She sat down beside me and asked me if he ever rode on a public bus and what were my concerns. I explained to her in some detail why I didn't believe it would be safe for him to ride public transit. As I talked to her about John Matthew's challenges, I constantly looked over at him and hoped that we weren't embarrassing him. A couple of times he interrupted us with, "but I don't do that any more." Darn! I could tell we were making him feel uncomfortable. Unfortunately, our conversation also reminded me of similar scenarios from his youth. I always felt guilty when I spoke to his therapists week after week about his challenges while he sat quietly nearby and listened. I always wondered if we were hurting his self-esteem. Speaking to the Paratransit staff that Friday morning transported me back to those guilt-felt times, except now I was even more concerned because John Matthew was an adult. After our conversation ended and John Matthew and I walked toward our car, I made sure to tell him that he did really well and that I was proud of him. I've always been thankful that he had a happy-go-lucky personality, and unpleasant situations never seemed to bother him for very long. At least I always hoped that was the case.
Just three weeks after our meeting with Paratransit, another very sweet lady called to inform me that John Matthew was eligible for their services. As I spoke to her, a sigh of relief came over me and I quietly rejoiced inside. I knew that there was no perfect anything when it came to our children, but at least the Paratransit services would provide John Matthew with a safe mode of transportation when he journeyed out into the community on his own "some day."
After I hung up the phone, I reached into my files and pulled out my "JM to-do list" and checked off "Paratransit." I was happy that there was one less item to be completed in order to set up John Matthew for a hopefully independent adulthood.
Next item to tackle on the "JM to-do list"... Social Security Supplemental Income!