Monday, May 28, 2007

Where is the Programmer?

Okay, don’t get me wrong here – I love my job, but it often leaves me stuck between a rock and a hard place. I was trained as an ABA (Applied Behavior Analysis) Therapist before I was able to obtain a Bachelor’s Degree. Therefore, although I knew the programs cold, I couldn’t implement them myself; I could only follow them. I also tended to become frustrated when the programmer would ask me for advice when it came to troubleshooting because I’d get this fabulous idea and then the programmer just didn’t see things the way I did. This kind of goes back to my early years, when my piano teacher tried getting me to read notes, and I simply would not. I wanted to play songs by ear, the way I knew how to play best – why on earth would she try and change that? Whatever, guess that’s just my stubborn self talking . . .

Annoying programmer issues aside, Ben’s programmer – get this – failed to show. Let me also add here, that there are many programmers I work well with. I simply have one request: I just ask that you do your job. Many of them do, but Ben’s programmer was already on my bad list because, well, she didn’t.

I soon learned two things about Ben’s programmer – that her name was Jessica, and that she was super savvy when it came to excuses. In the meantime, I just worked on the basics with Ben, however, after four or five sessions, I was feeling kind of strange, considering I’d been doing my own thing. I became extremely frustrated since I longed to just program the thing myself. Oh well, what could I do.

After three weeks, Jessica finally showed for a half-hour session, and left me a measly note that basically stated I was doing a good job, and that I should keep continuing. Oh, and she left some graphing sheets.

Of course, my note back suggested a team meeting, but I knew it would be a while before I got a response, let alone a date.

In my previous experience, I had found that a supportive family (e.g., parents who are willing to work with me and not stand aside while I “cured their kid”), as well as a dedicated programmer was the recipe for success. Looks like I was in for a real challenge with Ben, because I had neither of those. Yippee.

The Transition

My next two sessions with Ben were spent in the living room just as our first session was. I felt that no matter how Ben presented himself on that first day, it was still important to establish rapport with him and not rush into things too quickly. ABA therapy is intense and not always fun for the children. I didn’t want him to get overwhelmed and scared. After all, he wasn’t even two years old yet.

Our living room sessions occurred with me sitting on the floor, and Ben sitting either next to me or on my lap. Our toys would be around us, and well, so would everyone else. Sophia, for one, was really starting to get on my nerves. She didn’t stop talking for a second, and would grab all the toys she could at once, interrupting our “session” numerous times. I was anxious to get into a quiet room with Ben so that our therapy sessions would be more effective. At the end of the third session I spoke with his foster mom, Sally, and explained to her why it was important for Ben and I be alone in a quiet room for the session, and how distractions made it difficult for Ben to focus. I added that perhaps at a later date, I would allow Sophia to come into the session so that she can facilitate things like turn taking. (I also said that because I figured it would buy me some time without Sophia constantly in my face. That, of course, didn’t stop her from attacking me at the door when I arrived for every session to follow, asking, “Can I come in today??”)

The following week, Ben and I graduated to a quiet room. His foster mom set up a cute little wooden table with two chairs in the corner of her bedroom. Ben was fine with the new change, and was content as long as my toys were there. He was genuinely so reinforced by everything I brought – I was so captivated by that. Sophia, on the other hand, wasn’t too thrilled. I offered a compromise: Rather than having her join our sessions, I allowed her to come in and play with the toys while I wrote my notes at the end of the session. Every few minutes, though, I would hear knocks on the door, and then I’d have to gently remind her that it wasn’t time yet.

For the remainder of the week, Ben and I worked on turn taking, three-piece puzzles, eye contact, pointing, and compliance. That last one was sort of a challenge for him. Once seated, Ben was pretty much fine, but he simply wouldn’t come sit at the table when I asked him to. Typical almost-two year old ;)

And so, our first week in our new room was successful. However, a problem remained intact….

Truly an Enigma

My job is probably the most rewarding job out there, but it tends to take time for me to feel accomplished. The work is tough; it often takes a while before goals are met. The length of time, I think, adds to the feeling of accomplishment. It definitely can be frustrating. I’ve had instances where I’d try teaching a child the color blue for two months, but the day that child pointed to blue on command (upon my request), I threw a party.

The entire way home from his house that first day, I thought of Ben. I thought about the smile he put on my face almost immediately. I thought about how genuinely happy he seemed to be. I thought about how different he was from most of my other clients.

After dinner that night, I sat down on my couch and took out Ben’s IFSP and former evaluations. My agency is technically supposed to mail me the child’s records as soon as I inform them I will be taking on a case. Usually though, I was lucky if I received them after I have been seeing a child for a week. In this case, my things came in the mail the same day I met Ben.

Most of the time, the records indicate what I expect to see; lack of speech, tantruming behavior, poor eating habits, and so on. When I began to read Ben’s history, my jaw dropped. Ben was put into foster care five days after he was born. Apparently, his teenage mom had threatened to jump off a building holding her newborn baby. Now there’s something you don’t read every day.

I continued reading and learned that not only had Ben been diagnosed with autism, but he was also deaf in one ear. His left ear canal had not fully developed, and was closed. I thought back to earlier in the day and realized I hadn’t even noticed that.

Immediately, I had a million questions. If Ben’s life truly was the way it had been documented, how was he so happy and jolly? If he was deaf in one ear, had he not heard me? If he had autism, why did he stare me in the eye?

Ben's Story: How it all Began. . .

My hands gripped the steering wheel tighter as I glanced at the clock: 9:57. My session was to begin at 10:00. I turned the corner and read the street sign: Knotty Court. How ironic, I thought; my stomach was filled with knots.

It’s always the same story. Last night I took out one of my therapy bags and dumped its contents on the floor. As I kneeled in front of the bag surrounded by toys, books, flashcards and reinforcers, I wondered what to re-stuff the bag with. What would Ben enjoy? Would he be high functioning, or on the more severe end of the spectrum? Would he cry when he saw me? Would he be yet another client that doesn’t realize I’m there to help? These were just some of the thoughts that flooded my mind. Frazzled, I threw in a set of picture flash cards, a touch and feel book, a peg board, and bubbles, then zipped the bag shut.

I drove down Knotty Court with my therapy bag safely stowed in my trunk. I looked at the clock: 9:59. Perfect timing, I thought, as I pulled alongside the curb right in front of the house numbered 26.

I gathered up my courage and walked up to the front door, clutching my briefcase and my therapy bag over my shoulder. I knocked on the door, gulped, then put on my best “therapy smile.” The door opened, and a cute little Vietnamese girl answered. “Hi!” I said, with my biggest smile. “Hi!” she replied. “I’m Sophia! Who are you? What’s in your bag? Can I open it? What’s your name? Why are you here?”

Geez, this was going to be a fun one.

“I’m five an a half,” Sophia flaunted, as she tried to hold up five fingers. I proceeded to tell her I was here to see Ben. “Is Ben your brother?” I asked. “Uh huh, he’s in here,” she replied, and then grabbed me by the arm and pulled me into the living room. The house reeked of smoke. A disheveled blonde woman entered from the kitchen. She was carrying a baby in her arms. "Emily, can't I put you down for one second?!" she barked, in desperation.

“Hi, I’m Mindy,” I introduced, as I extended my hand. “Nice to meet you.”

At the sound of an unfamiliar voice, another child entered the room from the hallway. He was of African American descent, and appeared to be around eight years old. “I’m AJ,” he told me.

Then it dawned on me; these were all foster children. I stood there for a minute or so, taking it all in.

“BEN!” the woman called. “Get in here!” I sat down on the floor and laid my things next to me. As I was fighting for custody of my bag with Sophia, the cutest, most angelic child came running into the room. He came close to me, flashed his beautiful blue eyes at me, and smiled. I was completely blown away by his eye contact, but mostly by his intense beauty. He looked like a porcelain doll.

“Hi Ben!” I exclaimed. He giggled, then jumped on my lap. Okay, now I was officially confused; this child was supposed to be autistic. For the remainder of my hour and a half long session, Ben was able to keep focus. He was a quick mover, though, and I needed to keep up with his need to change tasks fairly quickly. Upon completion of the session, I let Ben run into the other room to play, and proceeded to write my end of the session notes. I took out my pen and began to write how our session went great; especially considering it was the first.

Ben and I connected right away. I was eager to come back and really implement some programs to challenge him a little bit more. For now, however, I was pleased. Ben was probably one of the only children I had seen in six years who hadn’t cried or tried to run away from my attempt at interaction.

Wow, this was incredible, I thought. Little did I know just how incredible it would be. Little did I know just how much Ben would accomplish in a year and a half’s time. Little did I know just what was in store for this little guy.

Sunday, May 27, 2007

The Mission

I'm just a human being; a nothing, a nobody.

Yet one morning, eight years ago, I opened my eyes and thought, "I want to make a difference." Let me begin by stating that I really don't have a big mouth. In fact, I used to never speak up, state my opinion, or raise my hand in class in high school. I just got lost in the crowd and did my thing.

But when I made the decision to make a difference, I knew there was no turning back. I knew I wanted to help children, but more so, I wanted to change lives.

I began working with children on the autism spectrum, determined to break through the invisible barrier and into their world. I, of all people, was going to get them to speak, to learn, and to learn HOW to learn. And so, my journey began, and eight years later, I graduated magna cum laude with a degree in Psychology. So you see, it *can* happen . . .

But I won't stop here. I'm determined to tap into the system, and to do anything in my power to make a difference in the lives of children. That means visiting a young girl in the hospital and getting her to smile; helping her realize she is not alone. It means persisting until a selectively mute child utters a word, and watching a smile form on his face, in satisfaction, at the thought of overcoming a fear. It also means removing a young boy from an abusive situation in order to provide him with a more stable, loving environment -- a better life.

The stories posted on this blog are true, however names have been changed to protect identities. I invite you to read and to be inspired, for these children have changed my life, even though I had originally set out to change theirs.

But, as I've mentioned earlier, I won't stop here. I'm on a mission; a mission to change the world.