Future Reflections       Winter 2015      COMMUNICATION

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Our Journey Continues

by Barbara Hammel

Barbara Hammel in a swimming pool with Paul and Jesse.From the Editor: The Spring 2010 issue of Future Reflections included an article by Barbara Hammel entitled "Down a Different Road." Her article introduced readers to her twin sons, Paul and Jesse, who were adopted from China. Both boys are blind and on the autism spectrum. Now Barbara has written a follow-up article, updating readers on the challenges and gains of the past five years.

In many ways things have not changed much in the Hammel household since I wrote my previous article in 2010. Jesse is still being fed, though we are slowly moving him toward picking up a loaded spoon and putting the empty one back in the bowl. Paul's language has made some gains, but he is still unable to express everything he'd like to say. Nevertheless, we have learned many valuable lessons.

For starters, let's talk about Namenda. Namenda is a medication that is sometimes prescribed for patients with Alzheimer's disease to help them keep their thoughts together. A psychiatrist here in our metro area is one of a handful scattered throughout the country who have begun to use this drug with autistic children. For some children Namenda has been a miracle drug, bringing them out of their own worlds and into ours. Some have begun to talk or to express themselves more clearly. Namenda has helped the autistic son of a friend of mine determine when he needs to use the toilet. Before Namenda he had many accidents.

For about nine months we tried this drug with Paul. At first we thought it would be his answer to communication, but as the dosage was increased he began to shut down. Even when we lowered the dose again, he was unable to regain the language he had when he began the medication. When we took him off it completely, we had a nonverbal child with so much physical aggression we were in danger of losing the services of respite and Supported Community Living (SCL). He was putting holes in our walls with his hands and/or his head.

Another medication, Risperdone, has helped Paul calm down tremendously. Now he is definitely too lethargic. He does not play anymore or jump around. He either sits on the couch under a blanket or stands and twists from side to side.

Seeking help from a new psychiatrist, we have begun to give Paul a supplement that provides his body with sulforaphane. Sulforaphane is a chemical most commonly found in broccoli, but he'd have to eat way too much broccoli to get the amount that a capsule provides. It has been discovered that when some autistic kids have a fever, their language and behavior improve. Sulforaphane is a natural substance that simulates what happens in the brain during a fever. While it has not made Paul a chatterbox who talks about everything under the sun, it does make him a chatterbox about what is important in his world—his schedule.

Jesse, on the other hand, is still taking Namenda. No, it has not been the miracle for him that it has been for some, but it has pulled him out of his shell. He now wishes for people to sit with him when he's rocking on the couch, or rocking on the "crash pad" in our basement, or playing at his sensory wall. (The crash pad is just a king-sized mattress the kids can lie on or jump on.)

Jesse also responds more to things that are said to him. The other day I told him we were going to buy gloves for him in order to protect his hands. (He has multiple sores where he comes in contact with the strap fasteners on the helmet he wears.) I told him he needed to think about what kind of gloves he would like, and even whether he wanted gloves at all. When he came home from school I told him the same thing again.

By the time we got to the store after supper, Jesse was reaching for everything his hands came in contact with—clothes, bicycles, more clothes—and when we finally found the gloves, he couldn't wait to get them on. He even indicated which of two pairs he wanted. He has worn them most of the time for the past two days.

Jesse also takes Risperdone to help decrease his negative behaviors. Both boys are now rarely considered a hazard to others, though they still are aggressive toward their poor heads—thus the helmets.

Like people with celiac disease, many autistic children have problems processing gluten, which is mainly found in wheat. This is one reason the gluten-free diet has become so popular. For Jesse, no gluten spells the difference between a very uncomfortably gassy child and a happy boy. After we finally got the school onboard with the gluten-free diet, Jesse is no longer "the crabby one," as he was described to us on the day we met him in China. Also, he has finally gotten rid of his pesky friend, the H. Pylori bacteria. It was discovered in the 1990s that Helicobacter Pylori is the root cause of stomach ulcers. Mainly the bacteria is acquired by eating contaminated food or drinking contaminated water. It is believed that 40 percent of adults over the age of sixty have H. Pylori. Of that 40 percent, 20 percent actually present with it. Symptoms can include ulcers, indigestion, gassiness, and reflux.

We assume Jesse came to us with this bacteria in his system. He went through three or four rounds of the standard antibiotic treatment to no avail. Finally last year we were referred to an infectious disease specialist who recommended six weeks of two antibiotics together; previously Jesse had taken each of them for two weeks, one after the other. The heavy dose kicked the bug, FINALLY!

In terms of education, Paul is on the verge of having a cane reintroduced to him. When he was younger he tossed the tip in the air and swung adapted mobility devices (ADMs) around, so the O&M instructor took the cane away altogether. Now Paul can walk around his elementary school without teachers clapping to guide him, and he generally knows left from right.

From three choices, Paul can tell you who a story is about, where it is set, and what is happening in it. He has demonstrated for a few years that he remembers events. If something happens on a certain day one week, he puts it in the schedule for the next week on the same day. And just the other day when I asked him what he had for Thanksgiving dinner, he volunteered, "Stuffing and pumpkin pie and cookies."

Jesse is working his way back into doing tasks that are functional, such as putting dry washcloths into a basket as the first step to putting wet clothes in the dryer. (His classroom has a washer and dryer, and he loves the dryer vent.) Another task is putting spoons in a container, the beginning step of sorting silverware.

Last year, because Jesse's self-injurious behaviors were off the chart, all academics were removed from his day. He just made choices between preferred activities to encourage his communication and interaction with people. This year, because of a school closure, Jesse has moved to another building. It is filled with ninth-graders, though he's still a sixth-grader. Our school system has Level 3 special education kids skip the junior high and move straight to this building, where they generally spend three years—Jesse will spend four. Whether it's maturity, a male teacher, or the lack of little children's voices, Jesse is doing much better this year. (The elementary principal remarked a few times that Jesse hated the voices of the kindergartners.)

Paul's teacher (a male this year, too) is making him responsible for cleaning up the messes he makes. It's working to decrease the number of messes. We told the school all along that this would help! Sometimes it takes the school a while to get with the program that we've found works at home.

I know today's theory is that blind kids learn better with hand-under-hand technique, resting their hands on the hand of an adult to observe an activity. I guess I'm old-school. My kids are used to hand-over-hand. We use it at home. When I use hand-under-hand, I end up doing everything they should be trying, while their hands are occupied by hitting heads and faces or just hanging down at their sides.

As I think back over the past five years, I realize how much all of us have learned and grown. We still have many unanswered questions, and many steep and rocky paths lie ahead. But we continue to make fresh discoveries on our life journey.

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