My Piece of the Puzzle - By Bianca DelVecchio

Dinner begins peacefully enough for once. However, Jake must have sensed that we were more tranquil than usual (that, or he is not a fan of cauliflower), because at that moment when we lift our forks, he starts. He arches his back to the side in his chair and begins his strained, borderline-crying whine that puts us on edge. I live with him, and that sound, almost melodic in a broken way, the way people under stress sing to calm their nerves, still peeves me. He abandons his food, running into the living room, where he drops to the floor, and gives his head a few sound smacks directly on the temples for good measure. He lets out a yell as if we’re torturing him, though none of us have moved from the table. My mother follows Jake cautiously with her eyes for a moment, looks at his untouched plate, and quips “Well, I guess he didn’t like dinner”.

Our family continues eating without bothering to look at him, though we are all thinking about the fate of our poor defenseless TV, left alone with Jake’s rage. As expected, he gives our TV a shove. The TV does not seem to care much, so instead he goes to my father, gives him a small push on his shoulder in hopes of igniting a spectacular confrontation, and quickly darts away. Our eyes meet each other in mutual understanding of Jake’s pathetic, petty attempt at egging on my dad, and we all burst out laughing, because that is all we can do, and it was pretty funny. In comparison with other episodes, tonight was tame; no pulled down drapes, no holes in the wall, and no wrestling match with my father on the mat in the living room. In other words, a good day in our household.

Jake is severely Autistic. I say severely because I don’t want you to have a mental image of my brother as a Rain Man- like savant playing his newly composed rhapsody on the piano. This is someone who can be extremely self injurious. The experiences I have had living with Jake has not made me a benevolent perfect angel with the patience of a saint (far from that), but he has taught me about the nature of people, and has made me reflect on who I am, something I had never liked doing.

Jake has a way of revealing the true colors of people, which came in quite handy. As he became more behavioral, we noticed our relatives withdraw from our lives until they weren’t a part of it anymore. This was also the time where we had a parade of respite workers stream in our house, and leave just as swiftly. Even the school he attended couldn’t deal with him. They would send him home claiming he had a rash, when in fact it was Jake pinching himself all over his legs, to the point of bleeding. Then of course, there were the numerous strangers who would stare or yell at my parents insisting my brother be put away in a residence, as if they had a true understanding of kids like Jake. At that point we felt we couldn’t trust anyone to help Jake except ourselves.

Later, our family would find people who actually understood and accepted Jake’s Autism. There was Eden, a school that probably deserves a whole novel. There, I met people who genuinely liked Jake, even after having to hold him down during a tantrum. They also significantly brought down his behaviors, allowing the old Jake to come back. The staff became my role models. They were real down to earth people, who were happy with and dedicated to their job, unlike many of the people who worked with Jake before.

More importantly, the staff also became my friends. Jake obviously was their main focus, but they didn’t neglect the rest of the family. The behaviorist would come over every few weeks to talk strategy with my mom about what to do with Jake, and then would ask me about how I was doing in school, an unprecedented action. For the first time, I had people with whom I could be blunt with about Jake, because they understood. They knew how much of a terror Jake could be (though even when he’s in rare form, they say he’s being ‘naughty’). I could never talk about that with other people, which I suppose kind of alienated me from others, since they never knew all about me.

Through Eden I became involved in volunteering at respite weekends with special needs adults, which led to me running a program at a special needs camp. My experiences at respite weekends and camp have helped me by requiring me to interact with people, and lead them, of all things, when I felt more like hiding in my room with a book. As a result I discovered that contrary to what teachers have told me, I can project my voice, occasionally to the point of losing it. I can command people to engage in an activity I planned (most of them anyway) and they actually listen to me! Beforehand, I was very much a wallflower; this work experience helped me come out of my comfort zone. At camp, it wasn’t about me and my insecurities; it was about the campers. My job that summer helped me discover my strengths.

Mind you, Eden has not cured Jake. They aren’t going to; it can’t be done, no matter what the media or Jenny McCarthy says. The staff make him easier to live with, and give Jake a better quality of life. Jake still has tantrums, especially now that he is a teenager. Raging teen hormones are not conducive to autism. I still get angry at Jake, though he can’t control what he does during his mood swings. Out of pent up stress and frustration, I have been hostile with him, though he has never purposely hurt me back. He shouldn’t, but I know he still loves me; every time we ask him who his best friend is, he always says my name. Sure, it doesn’t seem like a big deal, but when your brother is not very verbal, you take what you can get.

Every time I think about how life without Jake would be like, the negatives always weigh out the positives. Sure, there would be considerably less stress in our daily lives, I would have a closer relationship with my relatives, and my parents would finally get some sleep. But there would be so many people I would never have met, people who I can’t see living without now. By pure accident, I found out my chemistry teacher’s nephew had autism; her demeanor completely changed when I told her about Jake. Knowing that others are going through the same thing as you is a reassuring feeling; you know you’re not alone. For the longest time, I felt alone, and now I want to help others going through my situation. I want them to know there’s no such thing as having good or bad feelings about their sibling, but it’s something that needs to be talked about. My sister Sofia (5) already has anxiety and questions about Jake, and I have to explain to her that Jake’s self injurious behaviors are not done intentionally, but for safety reasons, I bring her upstairs when Jake is in rare form. She’ll grumble about being removed from watching her favorite TV program and how annoying Jake is. I’m glad she’s able to complain about Jake to me. Hopefully she will continue to confide in me about how she feels about our brother.
Now, if you’ll excuse me, I have to drag Jake away from the food cabinet, because I really don’t want to clean up another box of dry spaghetti from the floor… again… but that’s life.

Parents press states to force insurers to cover costly autism therapy; 7 states already do

By CARLA K. JOHNSON Associated Press Writer
Article Courtesy of the Associated Press

Click below to view this Important AP Story.

U.N. event focuses on autism

The diplomatic community calls for global attention to autism. CNN's Christiane Amanpour reports.

" You can't make this stuff up! "

John (not his real name) is an elementary student with high-functioning autism who goes to school in one of the districts we consult with. John has heightened awareness/anxiety about strangers. The school psychologist, Dr. Lewis (not his real name), was new to John’s class. When he entered the class, John got quite upset and hollered, “Stranger! Danger! Stranger! Danger! Stranger! Danger! Stranger! Danger!” The classroom teacher did an excellent job of explaining to John who Dr. Lewis was and that Dr. Lewis would be coming into the class weekly for social skills training.

After several visits, John was completely comfortable with Dr. Lewis. During one of Dr. Lewis’ social skills training sessions, John asked him, “Dr. Lewis, do you have children?” Dr. Lewis said “No,” and briefly explained why not. John then asked, “Dr. Lewis, do you have a wife?” Dr. Lewis, who was single, said to John “No,” and again briefly explained why not. John then said, “Dr. Lewis, do you have a fiancée?” and then, “Dr. Lewis, do you have a girl friend?” Again, Dr. Lewis explained briefly why not. John was quiet for the rest of the session. As Dr. Lewis said goodbye to the students as he was leaving, John yelled out, “Goodbye, Dr. Lewis. Have fun with your parents!”