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Jacob

“Ok, and on the last page of your syllabus you’ll see that you’re required to do a 3-page paper on some subject that we cover in this class, or you can do a service learning project and make an oral presentation to the class on your experience.”

From the haze of sleepiness on the first day of classes, I blink and look up at my abnormal psych teacher. A paper? *sigh* She’s talking about this other thing, this “service learning” where we volunteer 20 hours to some psychology related program. This sounds extraordinarily boring. I begin to think about the paper. Then she says something else that catches my attention. Something about Autism.

“...3-year-old triplets. Two are severely Autistic, one is typical. They are using behavioral psychology to teach them. Classical conditioning. They’ve been doing it for a few months now and are seeing some really cool results. They have five slots for volunteers. If you’re interested, let me know after class.”

It was almost a week before their father called me for a phone interview. Another couple of days before he called again to give me directions to their house and set up a time.

I knew nothing about Autsim. I had read a book once with a minor character who had Autism. And I’d seen Rain Man. But for some reason, I was fascinated by it. Wanted to learn more.

 It was a Friday afternoon, and I was sitting in a chair in their formal living room, listening as the father of these boys talked to the volunteers about the program. They’d started a few months ago. The kids were completely nonverbal. Wouldn’t sit still. Self-injury, tantrums, no potty skills, no self help skills. The impact this had on the parents’ lives was staggering. Two. Not one, but two like this. Plus their other son, who was also three and had needs of his own. The talk about the program was going over my head. I’d heard it all before, reinforcement and motivation and all these other things.  I was ready to get to the action. He split us up into two groups, and I was listed in the group for Jacob.

One last cautionary note. Just observe. Don’t interact, don’t interrupt. Just watch.

We walk into the room, sit on the floor against one wall. Watching the therapist work was like watching some kind of dance. Jacob was sitting at a table, she was in the floor in front of him. There were toys and food and a cup of juice by her. There were bins of various items she was using scattered about. A board in front of her had the program goals written on it. It was like the mad hatter’s tea party in Alice in Wonderland. When she finished at the table, she put her things away, and followed him about the room.

Then, he notices us. Looks over everyone, settles on me. Comes and sits in the floor in front of me. So serious. Scoots right up to me so his knees are touching my legs, cross-legged, mirroring my posture.

He is small for his age, being a triplet. Red hair, blue eyes. Pale skin awash with freckles. I look at the therapist for a clue as to what to do. We were told to observe. He reaches out and takes my hand. I’m taken aback. She smiles and says he likes me. I smile at him, and he jumps up and runs off. But I’m hooked.

I start researching Autism. Reading through the paperwork their father gave us. Am amazed by what I learn. The kids are not “retarded”. They just think differently. Don’t take social cues. So they don’t learn the same way as other kids. I’m amazed at how hard these kids work. They’re working 40 hours a week, learning. Six weeks into the my volunteer time, the father takes me off to the side. He says that there is a spot opening up for a therapist. Would I be interested in a job.

Yes. Yes I would.

Over the next three years, I worked with Jacob. When a spot opened up, I worked with his brother too, and another child who started a program like theirs. I started helping other parents set up programs with the help of the triplets’ dad, learning how to do what would eventually become my career. I went to workshops to learn about consulting. To learn more about the program.  I found a very deep love for these kids, and a need to help them understand. Their frustration became my frustration. I understood how they thought, and how to teach them.

I remember one day in particular when everything clicked for me. I had been there for a few months. I was learning the ropes still, still stumbling sometimes. Jacob could sense weakness, and he would pounce on you when you were down. We were potty training. A phrase that struck fear in the hearts of all of Jacob’s therapists. This red-haired  little boy had a temper to match. I was having a bad week with him. Had decided I was doing them a disservice. Had decided he didn’t like me and I was going to quit. I was sitting in their bathroom, waiting for his father to bring him in from his nap. Cold dread in the pit of my stomach, I ran over the words again and again. How I would quit.

Jacob came in, looked at me out of the corner of his eye.  Looking at the room. Bad mood. I think, Well. This will be easy. Thank you Jake. And then, this kid spins on his heel, and comes over to where I’m sitting on the step into the bathtub. Gets in my lap – like a baby. Snuggles me. His father and I exchange startled looks.

Something you wanted to talk about with me, Glow?

No, I think I’m good.

That day, we were playing with a toy. It was a robot that had numbers on the front. It would spell the numbers and you were supposed to touch the number. He couldn’t spell, so he was getting uber frustrated. I’m trying to help him, but he doesn’t want my help. He wants to do it himself. I am sensing an epic tantrum in the works. So I think..and think…wait. He can push a button, we’ve taught him that. We’ve taught him numbers.

Touch the number that is spelled n-i-n-e.

I cringe inwardly and say, “Jake…touch nine.”

He looks at me, looks at the toy. Uncertain. Two commands, not usually put together. I prompt him. Pointing at the nine button.

Great Job! Super spelling!!! Press the number that is spelled s-e-v-e-n.

Now he’s looking at me. Expectant.

“Jake, touch seven.”

He does. Gets the praise from the toy. Looks back at me, and I will never forget that moment. There was this look. This comprehension. This. People might be cool after all. This shared moment with him. And the slow, HUGE smile that spread across his face. Looking in my eyes. Waiting for me to smile back. Acknowledge our moment.

I’m laughing and crying at the same time.

This might not seem like a lot…but so many things happened in that moment. He took a social cue from me, put together things without being taught. And he was playing appropriately with a toy. With another person. 

Autism is so frustrating. You have to learn to tell the difference between regular little kid stubbornness and something that the child honestly can’t do because their minds don’t work the same way ours do. (Team meetings with their father often heard the phrase, “is this a ‘can’t do’ or a ‘won’t do’?” But that moment, I saw HIM. His eyes cleared, and we had a little moment of connection. That smile. Sharing something  with me.  I began to chase those moments. It was always my own personal goal to have them. Because they represented a chance at being able to function in society.

 Jacob and his brother had diagnoses of both severe Autism and severe mental retardation. Jake’s first goal was to sit in a chair for five seconds without screaming, hitting, biting, head-banging, or kicking the therapist. Five seconds. Nonverbal, no skills, it looked hopeless. When I got there, the kids were using some simple sign language, and had picked up a couple of almost unintelligible words. They had to sit at their table and work for ten minutes during the session. It was an ordeal to get him to sit down. To work. To not tantrum.  Some days, it was five 2 minute sessions there.   By the time I left, he was almost six. My two-hour therapy session was required to have 45 minutes of table time. When I would come in, I would sit down to read the notes from the other therapists since I’d been there, and he would come to me and try to drag me to the table. Ready to get started on the fun stuff. They talked. Well enough that strangers could understand them. Potty trained, able to dress and feed themselves. Make their own beds. Play with other kids appropriatedly - if still with a therapist shadowing them. Tantrums still happened, but rarely. They were overcoming the roadblocks life sent them.

Since Jacob, I have worked with a lot of kids. I have learned a lot about Autism, and about the kids it effects. But my little blue-eyed, red-haired Jacob will forever stand out to me. He was my first, and my best.

onceandfutureglow onceandfutureglow 31-35, F 14 Responses Apr 22, 2010

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Exactly. Once you learn Autism, you see that the kids are not deficient. They are just different. I have a friend who recently got an Autism diagnosis for her child, and she was lamenting all the times she'd disciplined her. Saying she was a horrible mom. No. She's a little girl who has always and will always know exactly how to push the limits. Stubbornness is not part of the criteria for Autism.

Yes, Glow. FIRST they are kids. THEN they are a kid with Autism.

Lilt...Video cameras and Jacob...is almost a whole other story. Maybe I'll blog about it. There were cameras in the rooms, but they weren't always on. I knew they were when Jake started to throw tantrums for no reason, pick the wrong answer on maintenance questions, and just basically throw the entire session on its head. You do become part of the family. When we lived in NC, away from family, one of my kids' families so completely adopted MrG and myself that we went to their extended family gatherings at holidays. (and they worked it out so I got paid for going, hahah!!) Goodness, I'm really starting to miss it. <br />
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Thank you Ford. :-) It's not about big hearts, and Lilt will agree. The kids...are just like any other kids, but learn differently. I was amazed at how quickly I went from feeling sorry for them because of the Autism to pushing and pushing because I knew they could do it. Getting frustrated when they gave less than their best. (*ahem, cameras*)

What an amazing and beautiful story! I so love hearing about wonderful people with big hearts like yourself helping those who need it :)

I had one family that video taped every session from start to finish. Mom watched from kitchen the entire time. At first it was really weird, then I forgot about the camera. The families of these kids blew my mind. You mentioned, intimacy, that is so true. These people have a revolving door of therapists in and out of their homes everyday. They share almost every aspect of their life with you. You become apart of the family. I especially liked being able to include the siblings in the programs. Everyone is on the team!

Yes Lilt!!! We had the books with all the maintenance/acquisition..but the thing I loved the most - was the boards. We used trifold dry erase boards (like you'd use for a science fair presentation) that had their goals on it. When I started, there was one board with one section of maintenance (written in black) and in blue were the current goals. By the time I left, there were six boards. one maintenance board for each of four therapists (written in *very tiny* writing), one board with current goals (all three sections filled in not small writing.) and one with "special" goals. The volume of what these kids learned...was just amazing. And looking back at things that were so hard to learn. When they mastered them...so proud...

"Put it in Maintenance!"<br />
I loved watching that page grow.

Nah. Just found some amazing kids and was fortunate enough to be able to hang out with them every day..

Yes. I think you're probably right. I have this theory that all kids are maybe aliens.

Yeah and they like to hit the cool kids with balloons too and make you listen to Who Let The Dogs Out a million times in a row because you laughed at it with them (Actually I think all kids like doing those two things).

Thanks Des. :)

Lilt - yes. I absolutely learned more from that job than any I have ever had. It was also the most intimate job I have ever had. You spend so much time one-on-one with these kids, and you get to know them. Celebrate with them. Mourn with them. I don't think I will ever forget any of my kids. They were all so different and so amazing. When I started consulting instead of doing therapy, I really missed the kids..I loved doing the programs, but missed the face time. <br />
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geetar - You should feel special. These guys don't just follow anyone around. Only the cool kids. :)

Yeah I agree. Great writing. <br />
I had the pleasure of getting to know an autistic kid who lived across the street and was the same age as my daughter. He could talk but was in and out of his own imaginary world. My kids were always over there playing and he was in and out of the fun in his own way. He would talk to me because I would play along with his imagination. One day we had a very specific conversation about time travelling/alternate worlds, etc. I just followed his imagination and added my own comments. He lit up like sparkler. He followed me all afternoon continuing the conversation. And again over the next three to four months whenever he saw me to the point where it was getting annoying for his parents and me, Then we moved. Years later he graduated along with my daughter from the same high school (they had special programs so he went with everyone else but had his own instruction). Afterwords, when he saw me - he gave me a big hug and thanked me for coming to his graduation.

This is just fantastic, Glow. I was right there at the little table with every word. You did a beautiful job of describing the "connection." It's been a few years since i've done ABA therapy, but it was the most amazing time of my life. You are so right about how hard those little guys work. But don't you feel like you were learning, right along with them? Each little or big success came with so much joy. <br />
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I'm so glad you shared this.