[stylist] Read Barbara's article from the Winter issue of FutureReflections

[Barbara Hammel]

Thanks for posting it for me, Robert.
Barbara




Writing free verse is like playing tennis with the net down.--Robert Frost
-----Original Message----- 
From: Robert Newman via stylist
Sent: Tuesday, March 24, 2015 8:34 PM
To: writers nfb
Subject: [stylist] Read Barbara's article from the Winter issue of 
FutureReflections

Here is Barbara's article from the Winter issue of Future Reflections:

Our Journey Continues

by Barbara Hammel

>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.


_______________________________________________
Writers Division web site
http://writers.nfb.org/
stylist mailing list
stylist at nfbnet.org
http://nfbnet.org/mailman/listinfo/stylist_nfbnet.org
To unsubscribe, change your list options or get your account info for 
stylist:
http://nfbnet.org/mailman/options/stylist_nfbnet.org/poetlori8%40msn.com