Wednesday, January 30, 2013

So Much More To Come!

This is the story I sent to John Hopkins University Press, a synopsis of what has happened so far regarding my nephew who has autism. They asked me to contribute an article on transitioning a person with autism into adulthood for their "Narrative Inquiry in Bioethics" Journal, and this was my contribution. Hope you find it a good read!

I took over the parental responsibilities for my 16 year old nephew who has profound autism when my sister passed away in 2000. She'd been a single mom for most of his life. I had a good idea what my wife and I could expect for challenges, because I'd been working with people having developmental disabilities (including autism) for 17 years. The degree of some of those challenges, I wasn't quite so ready for.
J. had very few skills at the time he came to live with us. When he arrived in Portland from San Francisco we first found him sitting on the floor in the airport clutching a blanket and rocking, with his eyes closed. I looked at my wife, and said, "This should be interesting" -- and it certainly has been. At least for the first year and a half. That's when I began to fulfill the promise I made to my sister on her death bed. That no matter what, I'd help J. make the transition from boyhood to manhood.
I had a feeling that there might be some strain on the home front, since my 14 year old daughter would need to get used to having another kid in the house, but she was only there on a limited basis. She spent more time at her mom's house than at ours.I was truly surprised on how quickly Harmony caught on to what we were trying to do with J. She was an only child, but demonstrated a love and understanding well beyond her years. She was much more helpful and accepting than I could have ever hoped for.
J. had a vocabulary of around 30 words when he first arrived in Portland. He expressed himself by using a combination of speech, his personal system of finger signing, gestures and pulling people by the arm to show them what he wanted and/or needed. He had no real concept of showering or taking care of his grooming independently. It was as though he couldn't see himself in the mirror. When things weren't going the way he wanted them to he would vomit. His most worrisome behavior was that he had a habit of touching women's hair, whether he knew them or not. I quickly realized that this could potentially cause him severe problems in the community!
We had enrolled him in a Portland Public Schools high school, as we understood the need for him to be educated. Things didn't go well from the beginning. It seemed as if all the students in his classroom were spending much more time being entertained than educated. Every other day it seemed like there was a party for no good reason, while we expected reading, writing and arithmetic to be the focus -- after all, in California he'd been working on simple algebra. We decided a communication log should go back and forth between home and school, as a way to hold their feet to the fire. It only proved what we suspected. They had little intention of providing a Free Appropriate Public Education (FAPE) as required by law. Following several IEP meetings, where eventually they called in their attorney, we knew something had to give.
At home we were doing our best to create a safe and loving environment, where the expectation that he grow up being responsible and accountable was ever present. Within the first month, he was no longer vomiting, as the understanding was when one throws up, they are obviously sick, and need to go to bed AFTER cleaning up their mess. He didn't like the whole cause/effect of that. We taught him to shake hands ONE time with females, and leave their hair alone. That took three months for him. I worked with him every morning on his grooming process, coaching him to look at himself in the mirror, which took six months for him to do independently. Lastly, we narrowed down his communication style to talking. If he could say 30 words, he could learn to say at least 300. We still work with him on that, but he's already gone from 30 into the thousands, and stringing separate words into sentences. What we found out about my nephew/son was that he would rise to the level of expectation placed upon him!
We knew there was a lot for him to learn, so after 1 1/2 years wasted in PPS, we finally took the district to court in Due Process. We knew that Special Education Law would be key if we were to win, but we also knew we had enough evidence to prove that they had neglected him educationally, so we didn't bother to hire an expensive lawyer. Instead, we studied voraciously to prepare ourselves with what we knew could get very ugly. My wife and I represented him ourselves, and after three days of hostile PPS testimony, the Administrative Law Judge found on J.'s behalf. She awarded him $19,000 to be used out of the school district for educational purposes. We signed him up with Sylvan Learning Center, where for the next year and a half he learned to read, write and do math. In fact, he did so well in math that when we asked if he'd like to go further with it, he emphatically let us know he would.
By now J. was 20, and it was time to get a job in the real world. We looked around until we found the setting that would best suit his needs at the time. He was set up with Goodwill Industries, where J. immediately excelled. He began making some serious money on a part time basis. Almost 300 dollars every two weeks, and as his Rep. Payee, I needed to figure out how to spend his earnings, so he wouldn't lose his Medicaid eligibility. What he seemed to be lacking more than anything else at this point were people his own age to hang out with and do fun activities with. I found an agency called TRIPS, Inc. that specializes in providing vacations to folks who have various developmental disabilities. Many of these people are J.'s age, so I figured we'd give it a shot. He absolutely loved it! The key to J.'s happiness is travel! For the past nine years he's literally been all over the world, from Hawaii to Alaska to Greece to Mexico to Portugal, to ten or so states on the continent. You could say he's a world wide traveler. We use the earnings from his job (still at Goodwill) to finance his trips, which only serves to motivate him to work hard. He gets in 3 to 4 trips each year. We often tangle with Goodwill to make his employment experience more realistic, and will continue to do so. We don't believe that ANYONE should work for less than the minimum wage in America. Though J. accomplishes this, we believe it's our duty to ensure his peers also do.
I guess this is a good place in J.'s story to tell you about his living situation. When he moved in with us, it came with the understanding that if he wished to live elsewhere, he could do so after he turned 18. As his grandmother used to say to me as a child, "Actions speak louder than words." Just before he turned 21, his behavior at home was telling us he may want to move on in his life. He began breaking some of the rules we'd set up for him, and had successfully been following for years. When I'd call him on it, he'd look at me with expectant eyes and ask, "New house?" I guess he was weary of dealing with Sergeant Uncle David's constant riding, and when I told him we'd start looking, the bad behavior stopped. J. was obviously ready to fly the coop.
We began looking at group homes referred to us by his County Case Manager. That was VERY disappointing! There seemed to be little concern for finding a place that met his individual needs, and a lot of concern with filling vacant group home slots. Some of the places they sent us to were filled with old people, and others who would not challenge his growth. These homes had no one even close to his age group. We checked out 5 or 6 of these referrals and then began looking on our own. As time went by, I could tell J. was becoming frustrated. He began to withdraw inside himself, which was of great concern to my wife and I. Finally, I gave up, and moved him into what was called Temporary Foster Care. That move turned out to be one of the best I ever made for J.!
The house was in a nice country setting, run by a couple of men just slightly older than J.They were friendly, warm, and welcoming. The other residents were right around J.'s age. They were all very involved in Special Olympics. Within a month the managers agreed that they also believed it was the right setting for J. When I contacted J.'s case manager to tell her we didn't need to look any further, she told me he couldn't live there permanently because it's reserved for people in crisis situations. This started a fairly intense argument between myself and the County. We argued for self-directed living, the whole age thing, and the fact that this was what J. wanted. What I eventually did was collect letters from 28 different people who knew J. and his individualized needs. The majority were professionals in the developmental disability field, family and friends. With this sort of pressure -- and a promise that I would take this story to the media -- the County was put into a very uncomfortable position, and shortly after, ended the standoff. J. could stay in the home of his choosing.
Once he became acclimated to his new home, we enrolled him into community college, with math and computers as the focus. We hired a few experienced tutors to work with him at school, making sure he understood what was going on in the classroom. He wound up breezing through his classes, and his grades were excellent. He also began attending dances each month with his housemates, and now has a very full and exciting life. Of course, he still comes over to our house each month on a Sunday to watch sports on TV with Uncle David, while Aunt Suzanne whips up his favorite meals in the kitchen.
J. was diagnosed as being low-range mentally retarded, with no chance of ever speaking, or having a life beyond mere existence. But, we NEVER gave up on his potential. We've found that diagnoses are little more than labels, stuck to people so that others feel comfortable in dealing with them. J. has taught us as much about ourselves and the "system" as we have taught him. He's made his transition to adulthood like a true champ! Because the people who love him put in the time and energy to ensure he'd go as far as he could, he has. And the beautiful thing about it, is there's MUCH more to come!

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