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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Friday January 11, 2002
INDEX:
* Living in a world of
autism
* Snow related activities
* A Teeny Tiny book about Martin Luther King, Jr
* January decoration
* Diorama project in the Ocean Fun section
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Living in a world of autism
By Angie
Zelenak,
Heritage Newspapers
"We pray for a miracle every day — every single day," said Rosemary
Riley-Mondro, in anticipation of a cure for her 8-year-old son, Jimmy.He has
attended the Lincoln Park autistic program at LeBlanc School for the last four
years. The school recently received a $40,000 grant from Grand Valley
State University to become a model demonstration and intensive training site.
"He’s doesn’t fall in the textbook parameter of being
autistic," his mother said, "but he has symptoms of it along with other
neurological issues."It has been a very long road for the Dearborn
Heights’ parents, who were a bit older when their only child was born.
"I was 41 years old and Jim, my husband, was 49," Riley-Mondro
said. "We were so happy."Taking all the precautions to ensure a
healthy baby, Riley-Mondro said they opted to go to a high-risk obstetrician,
just to be safe. "We had some fears for our baby due to my age," she
said. The pregnancy went along without a hitch and on Sept.
7, 1993, James Mondro was born, weighing in at 6 pounds, 11 ounces."We
were so grateful that everything went well. He looked healthy and
responded accordingly to the APGAR score," she said, referring to the
results of a nationally known test used to quickly evaluate a newborn’s
condition after delivery. Other than a low weight problem in the
first few weeks, things seem to be going fine with her son, Riley-Mondro said.
"He was a good baby," she said. "He responded to me
and loved to be held."However, as the weeks turned into months,
Riley-Mondro noticed that the baby would become loud and easily excited for no
apparent reason.At about 10 months old, she mentioned it to his pediatrician,
along with concerns that Jimmy didn’t seem to be responding to interactive play
or making attempts to talk. "He was very outgoing and loving, but just
wouldn’t focus or talk," she said.She said she remembers the doctor
saying: "He’s fine. All kids are different. He just happens to be
taking his time." Then, close to his first birthday, Jimmy developed a
seizure disorder that requires medication to control. "He just stared and
drooled," Riley-Mondro said. "It was painful to see him go
through them. But these things happen and children can live productive
lives. I was accepting of that." But what concerned the first- time
mother equally was that Jimmy was still not talking or showing any signs of
skills in other areas.When he was 15 months old, she again brought her concerns
to the pediatrician. "He’s just a laid-back kid is what he told
me," she said.Coincidentally, at about the same time, she had an
appointment to see a neurologist for an evaluation of Jimmy’s seizure disorder.
At that visit with the specialist, the still-troubled mother inquired with her
concerns. Presuming all else was fine, the doctor used a vibrating tuning
fork that is used to test hearing. "Jimmy wouldn’t respond in the
direction of the sound," Riley-Mondro said. "It was recommended that
I take him to a hearing specialist, an otolaryngologist."
The results obtained from the ear, nose and throat specialist
had a bittersweet conclusion: Jimmy had a moderately severe hearing loss.
"We were sad that he couldn’t hear but were happy to be getting him the
help he needed … getting him on track," his mother said.Nevertheless,
neither that information nor an attempt to correct Jimmy’s hearing proved
conclusive in the quest to help their son. At 18 months, Jimmy was fitted
for hearing aids and began working with an oral peripheral specialist who
visited the home twice a week for months. There was no change or
improvement in his progress. "She told us if he was only deaf or hearing
impaired, with the corrected hearing he now had, he should be doing more,"
Riley-Mondro said. "She suggested that there could be neurological
issues." According to medical experts, identifying
problems associated with the functioning of the brain can be difficult.
And it is more so if autism is involved because it is a neurological
disorder with no easily identifiable cause to pinpoint. "There are
no medical tests for diagnosing autism," said Barbara Brish, director of
the Lincoln Park school system’s autism program, which Jimmy attends.
"Observation is the best diagnosis, but some misunderstanding can
happen in diagnosing when using a textbook definition to identify autism.
It should not be the rule of thumb."With hearing aids in place but
no communication or language skills, Jimmy and his parents visited many doctors
and specialists throughout the United States for the next few years, to no
avail. No one could give them a clear answer to their question: What is
going on with our son?"We didn’t know where to begin or how to help
him," Riley-Mondro said. "Jimmy is very friendly. He makes eye
contact and likes to be touched, which is the opposite of how many people and
professionals believe autism to be."Doctors kept telling us that he was
too outgoing to be autistic, and yet, he doesn’t have language, which is
a textbook definition of autism." Finally, in 1997, when Jimmy was 4
years old, the family went to the Mayo Clinic after reading about Dr. Stanley
Greenspan, a nationally recognized child psychiatrist, researcher and author in
Baltimore, Md. He helped develop a program called the "PLAY
Project" for children with disorders in relating and communicating. "We
didn’t get to see Greenspan but did see a specialist with his group,"
Riley-Mondro said. "She was the first person who said, ‘Your son
falls within the autistic spectrum.’" It was very difficult for the
Mondros to hear the news. "At first, we didn’t know how to respond,"
she said. "We didn’t know anything about autism or how to work with
our son. "Especially after reading all the literature about autism, you
are completely devastated because you are told there is no known clear-cut cure
for autism."This, however, did not stop the parents from researching the
possibilities of one. "You often hear of management control
recovery," Riley-Mondro said, referring to adjustments in diet, hormone
injections or homeopathic intervention, which in some cases has eliminated
symptoms. "We found some to show signs of promise, although minimal, and
then others that didn’t."The time to reach a diagnosis, develop a course
of action and provide long-term guidance can be difficult, said teacher Mary
Ann Goniea, who works with the program at Crowley Center in Lincoln Park. She
said it is a long journey for the parents. "Each parent dealing with a
child who has autism will tell you a different version of their story,"
Goniea said. "Very rarely is there a straightforward definition for
diagnosing a child with autism."Areas that may be affected by autism are
communication, social or play interaction and behavioral and sensory
impairment, according to Brish. "Every child and adult with autism is an
individual and can have a range of areas affected and show delay in," she
said. "Then there are those that are high functioning autistic, which are
only limited in a small area and need only minimum intervention."Brish
said some of the behaviors associated with autism are similar to other
disorders, so numerous medical tests may be ordered to rule out or identify
other possible causes of the symptoms.The most common characteristic of autism
is evident when taking a child out of his sequence of events, which causes a
complete breakdown or tantrum. For others, it is addressing withdrawal
and isolation from people "into their own world." With
Jimmy, it is none of the above. "Jimmy can be easily re-directed and loves
to be hugged," his mother said. "He can say ‘hi’ and ‘om’ for mom,
but his receptive or understanding of language is not anywhere near where he
should be for his age."He cannot learn sign language because he hasn’t
mastered the fine motor skills which are often helpful with other children to
help them communicate."Riley-Mondro also said Jimmy is developmentally
delayed. She wonders if he had been diagnosed earlier whether he would be more
advanced now or if he has reached his peak of development."I’m not blaming
anyone," she said. "I just wish there was more information out there
about autism to lead professionals to take note and go beyond the
black-and-white definition. Early intervention is the key to a better
long-term outcome." As if to compound earlier decisions made on
Jimmy’s behalf, Riley-Mondro said she and her husband were told that Jimmy’s
hearing loss might not be as severe as initially thought. "An
accurate hearing test, I now understand, can be difficult to get from a child
with autism," she said. "But all that time working on his
hearing when it may not even be a factor in the big picture — that’s the hard
part."Jimmy resembles any other healthy, outgoing child. He has no obvious
physical appearances associated with autism and that leads to challenges in
taking him out in public, his mother said."Many people presume we’re poor
parents or disciplinarians and question our skills," she said.
"Once, my husband and I were asked to leave a religious service
because Jimmy was randomly going here and there. "I don’t hold any grudges
because people don’t understand. Thank God for people like Barbara Brish
and the staff in the Lincoln Park program. With their guidance I’m
accepting the challenges and they are teaching me how to best deal with my son
for a brighter outcome."Goniea asks for acceptance on the part of others
to acknowledge differences among people"We often ask people to accept
others for cultural differences," she said. "We also need to
remember to accept people for all their differences."People are more alike
than they have differences. Give children and people the opportunity to
show what they can do."Jimmy recently was accepted in the PLAY Project
at the University of Michigan in Ann Arbor. The project is geared toward early
intervention, training and advocacy for children with autism.
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If you are looking for snow related activities, there are many here at this
wonderful website by Backmanor:
Greetings
Make A Sleeping Mouse
Mother Goose Hypercard
Stack
A Jack-In-The-Box
Craft
Microwave Popcorn
Balls
Santa Concentration
A Unique Alphabet
Winter Counting
Sweet Treats Clipart
Christmas Poetry From Judith
Dinosaur Icons
Christmas Activity
Pages
A Snow Village
A Mitten Project
Mexican Wedding
Cakes
A Snow People
Project
Decorate A Tree
For The Birds
Handwriting
Worksheet Offer
A Winter Counting
Book
Jolly-O Bingo Game
Snow Crystals Stack
Hanukah Alphabet
Blocks
A Winter Scene
Cardinal
Clipart
Make A
Dollhouse
A Kwanzaa
Counting Book
Clipart Animal
Icons 2
The Winter's
Tale
Winter Dominoes
Hello Winter Book
Happy New Year
Banner
http://www.bry-backmanor.org/december/index.html
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A Teeny Tiny book about Martin Luther King, Jr
http://www.bry-backmanor.org/mlk.html
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January decoration
Try a snowflake wreath. Cut out a
cardboard wreath form. Print out some snowflakes and cover the wreath with
them. Accent it with some snowmen. I have put together some snowflakes
and snowmen in both color and black and white for you here:
http://www.bry-backmanor.org/januarywreath.html
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Diorama project in the Ocean Fun section
(http://www.bry-backmanor.org/oceanfun/ocean.html)
some extra ideas used that are very successfully.
Instead of construction paper we used old OHP transparencies and old x-ray
charts (to clean them put them in the bath and soak them in bleach - we call it
jik until they are clear.) Use either poster paints or glass stain or fabric
paints to colour them.The kids outlined the shapes from pictures or free drew
with a black koki pen onto the transparencies.
When you have finished the oceanarium cut a hole in the back of the box and
hang strips of blue cellophone paper to resemble the sea. Rig up a small
lamp or light of some kind so that it shines through the hole. Its like magic
to the kids.
I also used proper shells and pebbles we had collected from our beach outing
and mixed sand with a hard drying glue which I put on the bottom "of the
sea". The project just grew and grew as I went along. The
kids also made 3D seaweed etc with construction paper, and used a lot of
glitter and flourescent paints".
In keeping with the Ocean theme, here is a rerun of some ideas from a long ago
Newsletter. If everyone is tired of snow and ice, celebrate a Beach Day!
Forget the cold weather outside and get out the beach towels and sunglasses.
Have tropical fruit snacks like pineapple, papayas, and bananas and drink
fruit punch.
Listen to Island or Reggae music.
Play Simon Says with swimming strokes. Go on an imaginary surfboard
adventure. Do the Limbo.
Make some Playdough and build sand castles. Or, perhaps, use the clay to
build a beach diorama.
Uncooked Playdough
* 1 cup cold water
* 1 cup salt
* 2 tsp. vegetable oil
* 3 cups flour
* 2 tbsps. cornstarch
* Tempera paint or food coloring
Mix water, salt, oil and enough paint to make bright colors (for sand use
light brown). Gradually work flour and cornstarch to consistency of bread
dough.
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