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News- Page 2
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Personal Stories : Jonathan’s Story
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Posted by Sylvia on Thursday, May 19, 2005 (10:59:08)
Autism & Residential Care - A parent’s journal
Illinois is sadly lacking in quality residential services for autistic adolescents. In 1992, Illinois was ranked as one of the lowest states in the country for providing residential services for autistic children. Presently, Illinois ranking has continued to drop until it is now ranked between 47th and 49th making Illinois one of the worst states to live in for families dealing with autism. According to the updated 2002 study - Shame on Illinois, Courtesy of Brian Rubin J.D. of www.Brianrubin.com.
http://www.brianrubin.com/sys-tmpl/shameonillinois/
Parents of autistic children typically spend hours educating themselves on autism, so they can understand what’s happening with their child and what to expect in the future. In order to face the challenges they meet within the maze that is their state’s legislative system, parents often become skilled negotiators and lobbyists to get the best possible care for their children.
Once a care facility has been found and a child placed, a parent’s involvement must continue. Not all facilities provide appropriate care. Children are often neglected by the facility caretakers. They are fed improperly or infrequently, personal hygiene is ignored for those who cannot take care of themselves, education opportunities are limited and physical abuse occurs.
Involved parents demand proper care, good food, clean clothes, education and the myriad of simple day-to-day activities many people take for granted. For their efforts they are often labeled “hysterical†or meddling. Once a parent is labeled, that seems to provide an excuse for the facility to ignore whatever the parent requests or brings to the administration’s attention.
This is a wonderful method many institutions have developed for sweeping their staffing problems under the carpet and continuing with status quo care. Their residents continue to suffer – those who are autistic as well as those with other developmental disabilities. Parents and family members continue to work within the system to get problems and issues at the facilities resolved, normally without success. State Operated Facilities continue to ignore the parents, who have been labeled as hysterical and meddling anyway, so why listen to them? And the residents continue to suffer. They have no voice to speak out for themselves. Who will speak for them? When will this cycle end? When will Illinois legislators and facility administrators begin providing quality care for our autistic and developmentally disabled citizens?
This is a condensed version of Jon’s story; a journey documented by his “hysterical†mother, an informed and involved parent.
20 months
Our son Jon was diagnosed with a severe communication disorder at 20 months. We went to speech therapists, psychiatrists for special testing and several developmental pediatricians. We searched for quality programming led by professionals who could help Jon learn to communicate. We knew if he didn’t learn use some method of communication, he would soon become frustrated. His quality of life is and always will be our top priority.
Age 4
A local facility provided education, speech therapy and residential care for approximately 1 year. Their speech therapist and educators were outstanding. Although I never understood why Jon was only allowed to stay in their residential treatment program for 1 year, I accepted their regulations without question and took Jon back home after 1 year of structured care.
He was admitted to a local public school, but we soon realized it just wasn't possible for Jon to get the care he needed in a classroom. During this time in public school, we met some wonderful, qualified teachers who cried along with us when we all realized this option just wasn’t working. Jon left public school.
After several years of living at home with me and growing into a good-sized boy, still requiring constant care day and night, it became evident I couldn’t handle his full-time care much longer, even with occasional outside assistance. Jon became violent and more difficult to control as his and my frustrations grew. An alternative living arrangement was needed.
Age 7
Jon needed 24 hour residential care with an educational component, a service Illinois did not provide. The only available opening was in Peoria, and that residence would be provided only for a year. After that we would be back to square one – in need of residential / educational programming. It just didn't seem right to place him for a year, have him get accustomed to a new environment then start all over again with a new facility in a year. The search for a good care facility continued.
Age 8
Jon’s now in extreme need of a structured program. He could no longer be handled in a home environment and needed quality round the clock care.
After months of research, looking throughout the United States, a facility in Wisconsin was presented to us as an option by a local caseworker. This facility was the only residential facility (within driving distance) that would accept Jon.
I lobbied for funding for out of state placement in 1993 during the budget cuts and got the funding we needed for out of state placement.
Once Jon was placed in Wisconsin, our involvement with his care continued. I called him nightly to make certain he was doing all right. His father and I drove 12 hours round trip weekly to visit him on weekends and for special school events. We also had the expense of a 2nd residence we used for visiting on weekends to provide a loving home environment.
Age 18
Jon lost his placement in Wisconsin suddenly and was temporarily sent to a psychiatric ward, the only readily available placement for him. We were familiar with the psychiatric ward’s treating psychiatrist, because he had treated Jon at the Wisconsin facility where Jon lived for 10 years. Dr. G was stumped and didn't know what to do. He knew if he released Jon from the hospital, Jon would be placed in a mental health institution, and future residential facility placement would then be difficult. Dr. G suggested that we cross the border to Minnesota, so Jon could become a resident there and be provided for by that state.
Jon was released from the psychiatric ward and transported to a mental health facility in shackles, due to some administrative paperwork not being complete. The mental hospital in Wisconsin was not appropriate, even for 1 day. Jon was placed on hold while we waited for an appropriate residential opening in Illinois. That made me extremely nervous.
Facility administrators told us several times to move forward and get on with our lives. They didn't understand visiting parents. I used to lie near Jon in the small quarters they prepared for him while he slept on the 1-inch thick mat the institution provided as his bed.
I knew I had to do something, because if I didn't he would remain at this facility, all but forgotten by the state. Because of some required guardianship paper delays Wisconsin required, we had no input on the drugs Jon was receiving. The facility controlled their patients with drug-induced stupors. No education or quality of life was provided, and Jon began sliding into almost 24-hour sleep patterns.
I began an email, letter and phone call campaign to Springfield to get Jon transferred back to an Illinois residential facility. Although it took 2 months of lobbying at the Department of Human Services in Springfield, Jon was finally transferred to a state facility in Illinois. This was my first experience with a state facility. Unfortunately this facility provided inappropriate programming, so another Illinois facility was needed. Another campaign to move Jon to appropriate facility began.
A second Illinois facility came forward and seemed excited about taking Jon. Jon was placed there and lasted for 2 weeks. The administrators at this for-profit facility didn’t read Jon’s file thoroughly enough, prior to his admission, to realize this new facility didn’t specialize in autism, they just wanted the funding and a resident to fill a slot. Their response when they finally realized this was to have Jon removed to a local hospital, which didn’t want him. The hospital psychologist called every hour to ask me if anything had been resolved. Where would Jon go? There seemed to be immediate options – residential placement is not a speedy process. We followed the instructions of the hospital psychologist and he told us to go to a nearby hotel. If we took Jon home, we would lose placement and have to start over. The phone rang every hour until approximately 5am and finally a joint agreement was made to transfer Jon back to the State Operated Facility we started out with.
Age 19
Jon was transferred back to the Illinois state facility he was in a year ago and was placed in a different unit. Unfortunately this still was not appropriate placement.
Age 21
Jon is currently in a state operated facility, which is not an appropriate placement for him for optimum long-term care. Tooth brushing, grooming, wearing the same clothes 2 and 3 days in a row and constant staff ratio changes combined with violent challenging residents make the environment less than positive. We have noticed the direct staff definitely have their challenges and a tough job but there are only a select few direct staff that interact with residents. 90% of them do not understand autism, so they often neglect the residents and their needs. Jon often falls asleep due to lack of activity and interaction, unless parents are visiting.
Fortunately Jon has the opportunity to attend a day school off the facility campus. However, because of Jon’s current age, school will end for him in early June 2005, and he will be placed in the state facility workshop day program. This program does not provide the education he needs, so unless he can get into another off-site program for the summer, he will once again be faced with losing much of what he’s learned and living without constant educational stimulation. He has progressed well with the school programming (separate from the state), so we are concerned about the state workshop.
Jon’s Story is far from over. His journey through residential care will continue for the rest of his life. What will happen to Jon when his parents are no longer around to make certain he’s not dumped somewhere and neglected? This is a constant worry for all parents of developmentally disabled children. What can be done to alleviate this concern, particularly when you’re living in one of the least caring states in the Union – Illinois.
Our legislatures need to wake up and reframe their priorities, so our autistic and other developmentally disabled citizens are well taken care of.
• Illinois has lengthy waiting lists for quality residential programming.
• Occasionally there is ‘hearsay’ about a new group home or facility opening and it never occurs.
• Quality residential care doesn’t exist in Illinois and if it does, there is never an opening or the CILA provider doesn’t specialize in autistic residents.
• Caseworkers rarely have answers or call parents back in a timely fashion.
‘SO MANY TIMES, I WANTED TO PACK THE CAR AND MOVE TO A STATE THAT PROVIDED EXCELLENT SERVICES’.
• After losing Jon’s placement 10-year placement in Wisconsin, I dreaded searching for a quality facility in Illinois.
• I wanted to move out of state but I needed to respect Jon’s father’s wishes. His father wants him close to home and within driving distance for weekend visits.
MY DREAM
I often look through magazines and read about a celebrity’s autistic child. I know that child is well taken care of because the celebrity has the money to provide the best care and staff that money can buy.
I wish I could build wonderful facilities and group homes everywhere for our special autistic loved ones in need of quality residential care, regardless of their age. It would be wonderful to provide a welcoming environment, a sensory room with colored lights, fun things to do, enjoyable chores, good food, education, behavior specialists, progressive behavior programming, direct care staff who understand autism and care about their chosen profession, and so much more . . .
Contact the author: Illinois_story@yahoo.com
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Personal Stories : For a severely autistic child, success is measured one step at a time
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Posted by Sylvia on Sunday, May 08, 2005 (22:48:17)
Fort Wayne 05/04/05
By Eric Adler
Walk 7 feet.
That's the goal.
If 8-year-old Walter Martin can make it, if he can pick up his white plastic lunch tray piled with spaghetti, grip it steadily in both hands and carry it 7 feet to the salad bar without splattering food all over the linoleum, that would be tremendous.
It would give Jeff Martin, Walter's dad, hope that perhaps one day - long after he and Laura Martin are gone and Walter is grown - their son will not be helpless. Even with severe autism, maybe Walter will somehow do what they literally pray he'll do.
"There you go, sugar cookie," the lunch lady at Katherine Carpenter Elementary School says to Walter who, at 49 pounds, is muscle, skin and flag-pole thin. His hair is short as peach fuzz.
The lunch lady places the tray of spaghetti on the aluminum counter. Walter squeals, "Beeeeh! Beeeeh!"
He hops on his toes. He jerks his head up to the right over his shoulder. His eyes, expressive and brown, are alarmed or curious. His stare freezes on something somewhere up and away. What he sees, what he hears - what he thinks he sees or hears - nobody knows.
Like an infant, which Walter is in many ways (away from school he wears a diaper under his long pants), he will coo or babble. He'll scream in the high-pitched anguish of a baby. His face collapses. He flaps his hands as if his fingers are on fire. His forehead furrows. Then just as quickly, it evaporates. A beatific contentment settles over his face. Or he'll squeal in delight, mouth wide open, top teeth showing, eyebrows arched, his eyes like pool balls, his attention drawn to something far away.
Walter turns 9 in April. He hasn't said a real word since he was 17 months old.
Walter clasps both hands on the edges of his lunch tray. He slides it along the aluminum counter.
Earlier, Walter's autism teacher, Judy Becker, helped Walter rehearse using an empty tray. He dangled it and flipped it. He jumped with it in his hands. He nuzzled it to his chest before straightening and carrying the tray correctly.
"Good, Walter!" Becker encouraged him then.
Now the tray is off the counter. It's heaped with spaghetti. Becker steps back, but hovers close, ready to rescue it from crashing to the floor.
Walter takes a step.
Across the country, the number of children diagnosed with autism or one of its related brain disorders (Asperger's disorder, Rett's disorder, Childhood Disintegrative disorder) has ballooned beyond all experts' understanding.
In Missouri, the numbers are up close to 500 percent in the last 20 years. In Kansas, it's 900 percent, according to the U.S. Department of Education. Nationwide, they've risen tenfold. The American Academy of Pediatrics now estimates that one in 166 people has some form of autism - from the highest-functioning Asperger's in which children can be near geniuses in some areas, but have social problems - to the lowest-functioning disorder like Walter's.
The National Institutes of Health this year is pouring $99 million (compared to $22 million in 1977) into autism research. Knowledge has advanced regarding diagnosis, brain mapping, semi-helpful medications, plus occupational and speech therapies.
Theories on autism's cause abound: genetics, vaccines, environmental toxins. But the cause remains a mystery. A cure is unknown.
Left leg. Right leg. Two tiny steps from the lunch line. The tray remains balanced. Judy Becker hangs back, hoping Walter can do this on his own.
Every parent of a child with severe autism has heard the miracle stories.
A child trapped for years in his own autistic world swims with dolphins or is handed a computer keyboard or musical instrument. Something clicks or unlocks. Parents who have never heard their child's voice hear him sing, talk or write, "I love you."
One Martin relative tells them frequently, "You'll be surprised. Someday, he'll snap out of it."
And Jeff Martin used to think, yeah, Walter can beat this. He may never be 100 percent typical. But the Martins are smart, driven people. Laura, 41, is a lawyer. Jeff, also 41, is a landscape designer but stays at home full time because of Walter.
Their 12-year-old daughter, Grace, is gifted. The summer after third grade, she devoured 140 chapter books. She reads Shakespeare.
So the Martins thought if they dug in and did everything right, Walter could break through.
One, two, three more steps. Tray straight. Four feet to go. "Good, Walter!" Becker thinks.
Now the Martins know differently. Now they know that for children with the most severe autism, improvement comes one step, one inch, one tiny task at a time.
Three feet to go.
Jeff watches. His wife is the pragmatist and realist (she must be this way, she says, otherwise she cries). Jeff is the romantic. His voice is gentle. His manner is easy. He wears his graying hair short and his beard stubbly because Walter, like many other autistic children, loves the texture.
Some children with autism are so ultra-sensitive - to both touching and being touched –– that they scream and struggle to break free from hugs. Some practically rip fabrics off their skin.
Walter isn't like this.
"I'm not sure what I would do if I couldn't at least hold my son," Laura said.
Walter's face glows with peaceful calm when he strokes his dad's beard or pats his head. How can he so love textures yet be cut off from larger sensations?
Walter does not respond to pain. He once split his lip on a curb so deeply he needed multiple stitches. He never cried.
He once held a sharp single-edged razor inside his mouth. No tears, but also not a single cut.
Jeff calls this "Walter's divine halo," an almost Zen-like state in which Walter is not hurt because he doesn't understand he can be hurt.
That frightens the Martins. They must guess: When is he in pain? When is he sick? One of the biggest killers of kids with autism is car accidents. They dash into traffic unafraid or unaware.
...11, 12, 13 steps. Walter's made it. He's made it to the salad bar. But the bar's foldable counter isn't locked in place. There's nowhere to rest the tray. Walter tilts his tray 10, 15, 20 degrees. Food begins to slide. Becker rushes over. She holds up the tray with one hand, clicks the counter into place with the other, and then helps Walter set down the tray.
Walter's reached this goal, but Becker decides to go further, to see if Walter can now make it to the cash register. Walter smiles, "beeeh! beeeh!" and hops up and down.
Of the 200 students at Katherine Carpenter in Overland Park, Mo., about 25 have special needs. Walter is in a class with three other boys about his age, each with autism. Each has his own teacher and an IEP, an Individualized Education Program.
Typical students Walter's age learn multiplication, division, history. They perfect cursive writing. Walter's goals over 36 weeks:
1. To recognize his name in print.
2. To point to "communication" icons - little square drawings that represent activities such as play, work, snack that he prefers - then to take part in that activity.
3. To identify his cup, plate and fork and to hand them to Becker when she asks for them.
4. To identify his plastic utensils and place them on his tray without help.
5. To carry his lunch tray first to the salad bar, then 3 feet more to the pay table; then 10 feet more to the utensil table, then the big move: To carry it 90-plus feet to his seat.
Jeff Martin laughs at an old thought he used to have. He cringes at another.
Not long after Walter was born, he thought his son might be "brilliant." And years after he was diagnosed, there were hard moments when he thought it might have been better if Walter had been born with a terminal illness. "Because then you'd know there'd be an end to it," he said.
Walter makes it to the cash register. He turns, and steps toward the utensil table just inside the gym door. Ten feet, 9 feet, 8 feet..."Good, Walter!" a lunch lady says.
Walter was born on April 15, 1996. He seemed perfect. Like most children with autism, he showed no early signs of the disorder.
The way he easily found and matched patterns, even in the weave of rugs, made Jeff and Laura think Walter might be gifted.
But one of autism's mysteries is how it rarely reveals itself until children are 18 months, even 2 years old. So it was with Walter.
The Martins never had lofty plans for their lives. They wanted to marry, have kids, live in a nice little house.
Jeff Martin's Air Force father - Maj. Walter W. Martin - died during the Vietnam War in Laos in 1969 when Jeff was 4.
"I always wanted to be the father that I wanted," Jeff said.
They had Grace in 1993. Then Walter came. But at 18 months, he still didn't walk. He didn't talk. He almost never made eye contact. Doctors thought he might be deaf. Walter lives in his own world - a nearly 9-year-old boy who's mostly an infant. The care never ends: feeding, dressing, cleaning, watching. For a long time, when Walter erupted in rages or tantrums, he bit himself, others, chairs, anything.
Baby sitters? Forget it. Family trips? Forget airplanes.
Even now the Martins usually do split-duty. If Grace has a school event, one or the other parent goes. Walter can't be left alone. He often can't go along because of his distracting, unpredictable behavior.
He squeals. He yelps. He flaps his hands.
The Martins worry about neglecting their daughter. "She's like an only child with this sibling who takes all this time," Jeff said.
People see Jeff and Laura together so infrequently, they often ask if they've divorced.
Harder still is the paucity of emotion. Children with severe autism are not like affectionate children with Down syndrome. Some never connect. Others, hardly. Hugs are rare. Kisses are rarer. The few times when Walter wraps his arms around his parents or lays his head in their laps, is like receiving gold.
"They (children with autism) can be hard kids to love at times," Jeff said. "You don't get much back."
The Martins own 40 acres on a family farm in Pittsburg, Kan. When Walter's there, he runs and runs. He smiles and coos. He loves to be in the backyard of his home. For long minutes, he'll lie back on the slide and stare into the clouds.
"I'd love to know what's going on in his mind," Jeff said.
In their finished basement, the Martins have a treadmill, yoga ball and a "rocking board" Walter enjoys. Grace says her brother smiles at music, especially at Disney Sing-A-Long videos in which the lyrics scroll at the bottom of the screen. He watches the words.
Mesmerized, he often lies on a little patch of carpeting set high up along a bank of windows that allow light to pour into the basement. He'll stare at the sky forever.
Then there are his plastic fish. They're toddler's toys, pieces of colorful plastic bent into the shape of fish. The fish loop together to become a chain.
Just as Linus from "Peanuts" won't let go of his blanket, Walter loves to hold a single fish between his right thumb and forefinger. Then he twiddles it, twiddles it, twiddles it, twiddles it, on and on, rotating it between his fingers or clicking it on a tabletop, staring at it, his eyes inches away.
The Martins have scores of the fish in their house as backups in case one is lost.
Walter plops his tray on the utensil table. Becker grabs the paper napkins. She hardly has time to drop them on the tray before Walter is off again, heading across the entire length of the basketball court, more than 90 feet - his biggest challenge yet.
Some nights, Jeff Martin has a dream about his boy. In it, Walter talks. His voice comes out of nowhere. Jeff is so excited, he runs looking for Laura to tell her, "Walter can talk!"
He no longer thinks the dream will come true. Now it's the "little things" that give him and Laura hope.
Walter recently learned to drink from a regular cup rather than a sippy cup. He can now identify his name in print.
When Becker points to a picture of a cup or plate or fork, Walter hands it to her. He's making connections. The hope is that someday maybe he will be able to string enough of these little pictures together to communicate.
At school and home, he now sits still in a chair, something he has never done before. He's learned that his backpack goes with him to school. Asked to get his shoes, he gets them. Bathroom "accidents" in class are now uncommon. Every Friday, Walter and his classmates go on an outing to someplace like Wal-Mart to get them used to being in the real world.
"He is learning," Jeff said.
The Martins know their son will always need help. He will be in special, intense classes in the Shawnee Mission School District until he is 21. Their ultimate dream for him is he may one day be capable enough to live in a group home.
"A lot of the students I have now may look and act exactly the same when they're high school age," Becker said. "The idea for Walter is quality of life, and dignity, for Walter to be the best he can be, for him to feel as comfortable as he can in his own skin."
Walter's food tray plunks down on the table. He's made it. Not one morsel of food spilled on a two-minute trip more than 100 feet from where he started.
Tomorrow or next week or next month, the skill could vanish. It happens that way. The Martins and Walter's teachers might work for months on a single task. Walter masters it. Then it's gone.
But the mother of another child with autism once told the Martins something. Having a child with autism is a marathon, not a sprint.
"It's been a long journey," Jeff Martin said. "We accept it will be lifelong."
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Personal Stories : Echoes of autism: 5 kids in 1 family
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Posted by Sylvia on Sunday, May 08, 2005 (21:34:31)
The Clarion Ledger 04/04/05
By Sharon Jayson
There is a quiet irony in Jeanette and Patrick O'Donnell's house, where autism has taken hold of five of their six children.
Though the brain disorder is most often associated with an inability to speak, autism has rendered this household anything but silent.
"You have to get used to the sound," Jeanette says of the crashes and pops that mean something is breaking or hitting the floor, usually propelled by small hands. The cacophony of seven older television sets, usually tuned to different channels, drones in the background, fed by a backyard satellite dish.
"We have to have TV on all the time," Jeanette, 44, says. "It's a stimulant."
It's rare to have so many children with the disorder. A database operated by the non-profit advocacy group Cure Autism Now says the O'Donnells are one of only three known U.S. families with five autistic children. Fourteen other families have four.
"People say, 'How do you do it?' " Jeanette says. "We weren't really given a choice. It would be the same if we had diabetic children or a child who had cancer."
"We're not big into self-pity," adds Patrick, 39, a print room supervisor for an insurance management company.
A glimpse into the O'Donnells' modest four-bedroom home is more than a look at the faded furniture they either inherited or bought at garage sales: It's a peek at a family on the verge of overload.
"You get stressed," Jeanette says. "Sometimes I go, 'Oh, my God, I can't take another minute.' "
Living with autism has meant adjusting to diagnoses spanning a spectrum of baffling symptoms. Jeanette provides almost non-stop prodding, with reminders about basic grooming, and caters to the rigid routines and personal quirks characteristic of the disorder:
Caitlin, the oldest at 14, has classic autism, the most severe form. She has a high-pitched scream and has difficulty being around others.
The next oldest, Deirdre, 10, has Asperger syndrome, the mildest form. She converses about subjects like Greek mythology but is socially awkward.
Erin, 8, has some signs of classic autism as well as a sensitivity to sight and sound. Her diagnosis: "Pervasive developmental disorder not otherwise specified."
Patrick, 5, is in pre-kindergarten part time and also attends preschool for children with disabilities. He has the same diagnosis as Erin.
Kiernan, 4, also is in preschool for disabled children. Diagnosed with severe autism, he rocks back and forth and is never far from a TV.
Meaghan, 7, is the only child not diagnosed with autism. She loves to draw and often helps her parents with the others.
"It kind of upset her that she was different," Jeanette says. "I said, 'That just makes you a special child in this home. You don't want autism.' "
A silent epidemic
Autism can transform a loving toddler into a detached and uncommunicative child. Researchers aren't sure of its causes and say there is no cure. But numbers are increasing dramatically. A decade ago, one in every 2,500 U.S. children had autism; now it's one in 166, the Centers for Disease Control and Prevention says.
The Autism Society of America, an advocacy group, says the number of Americans with autism could rise from 1.5 million to 4 million in the next decade.
Researchers are studying a number of possible causes and contributing factors, including the role of genetics and childhood vaccines. Scientists now believe there is a strong genetic link, but exactly which genes and how abnormalities occur is still a mystery. The O'Donnells say doctors told them in 1993, when Caitlin was diagnosed, that it was not hereditary.
They already had four kids by the time a second child, Erin, was diagnosed in 1999. Jeanette says the three youngest were conceived while she was using a low-dose birth control pill.
"When autism comes into a family's home, it dominates the house and puts the family in a crisis situation," says Lee Grossman, president of the Autism Society.
Patrick umpires softball two nights a week to help stretch their single income. The family gets state and federal financial assistance totaling about $2,500 a month, which also includes respite-care money for a babysitter.
There is little couple time in this busy household, Patrick acknowledges. "Our quiet time is 10:15 p.m. to 10:25 p.m., when you pass out on the bed talking to me," he says, glancing over at his wife.
But they believe all their efforts make a difference. After years of speech therapy, all the O'Donnell children but 4-year-old Kiernan speak, though some haltingly. Caitlin stopped saying words at 15 months and didn't talk again until she was almost 8. Doctors say Kiernan also could have mental retardation, though it's hard to determine because he is non-verbal.
Caitlin, a middle-schooler in both regular and special-ed classes, has a full-time attendant, provided by the school district to keep her from running away from classmates.
At home, she's usually in her pink bedroom with Barbie curtains, at the computer, playing video games or watching TV, even eating her meals there.
At home, they let go
The house may look disheveled and sound like a war zone, but Jeanette wants it to be the one place the kids can relax and be themselves after struggling to control their behavior all day at school. "Sometimes they go nuts here. They draw on the walls. They break the furniture. They've got to have somewhere they can let go."
Patrick acknowledges that it is tough to parent such children. "Jeanette has said I'm one of the most calm people she's been around, but I have a lot of frustration and anger underneath. I have seven people who depend on me for whatever they depend on me for, and I can't let the frustration or the anger spill over."
Playing softball twice a week with pals works off his frustration, he says. "I get to hit a 12-inch-round ball instead of hitting an 18-inch-round head."
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Personal Stories : I prayed to God for a child
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Posted by sylvia on Friday, March 25, 2005 (11:18:35)
This real-life story is written by Denise
I prayed to God for a child. I said, “God please I’ll
even love a child with special needs.†My prayers
were answered more than I realized.
My girlfriend and I were suffering from fertility
problems. We were going for testing and comparing
notes and test results. One day I get a call saying
that my friend was successful and she was pregnant. I
replied I think I am too!
We’ll we went through our pregnancies blissful, our
due dates 10 days apart. We’ll when the time came,
she had a little girl and I had my little girl 7 days
later. Both girls were beautiful and we eagerly
compared newborn milestones and achievements.
At about 4 months my Michelle had difficulty rolling
over. She did accomplish this behind her friend
Katie. Michelle liked the tub as much as her friend,
but seem distressed when the water would go over her
face.
First birthday’s they came and went. Katie now has a
very extensive vocabulary while Michelle struggles
with a few words. I would tell the pediatrician and
she said, “Don’t worryâ€; followed by a hearing test,
which was normal. We changed pediatrician’s.
My friend notices her aloofness and preference to play
by herself. I say to myself “So she wants some quiet
time.†At 18months Michelle enters early intervention
for speech delay. Still she struggles so hard for a
word or two and then I don’t hear “those words†any
more. Where did they go? When did she stop using
them? At the same time I knew I’d hear a new word
once and that was it.
Not really sure at what level Michelle is
developmentally I ask my friend. I gave her some
development questions to answer that I know Michelle
hasn’t achieved yet. I’m blown away. Her daughter
knows 700+ words, she can follow complex directions
and dress herself and even has started to work on
potty training.
2 year checkup goes by without any remarkable problems
or concerns.
2 weeks later Daycare is persistent with “things†that
Michelle is doing and not doing. Every day I’m
hearing things that I don’t think mean much. She’s
not enjoying things she seemed to enjoy before.
She’s
hiding under the table. She won’t sit at circle time.
She doesn’t seem to hear when we call her. She has a
hard time calming down after an activity. I call her
pediatrician in an effort to “quite daycare’s
concernsâ€. He says it sounds like it could be autism
and he sends her to a pediatric neurologist. Why
didn’t he question her development 2 weeks ago at her
checkup? I admit I couldn’t even say the “A†word. I
did some research and it scared me, so this is what my
daughter didn’t have.
3 weeks later at age 25 months we saw the neurologist.
Twenty minutes into the visit BOOM, your daughter has
AUTISM!
Little did I know how much my life was to change from
that day? I tell my friend of the news. She
automatically assumes she has severe autism and starts
to tell me things that I don’t want to hear. Of
course, all the while reminding me how perfect Katie
is.
I try to make arrangements to get together. She
always has something else going on. After several
months of this I feel like she doesn’t want her
daughter exposed to my daughter as if she would catch
what Michelle has. We emailed from time to time but
it wasn’t the same.
She got pregnant again, this time with a perfect baby
boy, of course.
I too was trying to get pregnant, as it would take 3
years before this was to happen again. I too got
pregnant also with a boy. Only my boy has had
problems since before he was born. This friend and I
have parted since before my boy AJ was born. It was
some argument over why we should/shouldn’t vaccinate.
I’m sorry to have lost what I thought to be a good
friend but she was too stressful to my life. I think
about her often and miss her but she is living in a
perfect world.
It was about this time that my sister posed a question
to me, one that I’ll never forget. I was looking for
a little compassion one day telling her of all our
doctor appointments and the expenses that went with
them. She said to me “Why would you want to spend so
much money on something that there is no cure for?â€
I have forgiven her but will never forget such a
hurtful thing said. I so want others to understand
our struggles but unless they walk in your shoes how
could they? I have made lots of non-perfect friends
and feel lots of love that is genuine. Michelle
(5yrs) is a beautiful child. She has a great
personality and loves to hug.
We have many demands ahead for both kids as my boy
(2yrs.) may follow her sister’s footsteps as I’m told
that it looks like he to may have autism as well.
AJ has struggled too with speech and he’s had hearing
issues that I believe are resolved now. His
coordination is a bit off as he falls regularly. He
gets too much enjoyment holding a bar of soap while he
washes his hands and tantrums as we pull him away from
the bathroom. Will endlessly search for something
with buttons to push, and enjoys a run for it when
he’s spotted. Loves a bit of rough play just like his
sister and the anticipation of ANY food product will
bring a smile to his face. AJ’s smile has warmed
every heart that’s had the chance to see it.
Everything seems to create a boo-boo on his fingers
while the littlest fall sends showers of tears down
his face. Eating is more difficult too as he needs
the assistance of his hands to move the food around
his mouth.
My Michelle was tough to the point where I had to tell
her she had a boo-boo as she was unaware. Each is so
different but seemingly the same too.
Don’t know where or how I get the strength to deal
with the daily and weekly stress of having a special
needs child. Will I be able to handle two?
Denise
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Personal Stories : Help at every turn for mother of autistic boy
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Posted by sylvia on Sunday, March 06, 2005 (21:44:29)
The Star 03/02/2005
By Hasnah Toran
I arrived in Eugene, Oregon, in September 2002 for my graduate studies at the University of Oregon in the United States. As an educator and mother of an autistic boy, my area of research focuses on the screening tools that could be adapted to assess development in young children in Malaysia.
I missed my husband, Suffian, and my son Muhammad who was seven then, and my two-year-old daughter, Haniin. I especially missed Muhammad who is autistic. We had been staying in Rembau, a small town in Negri Sembilan. My son had never been to school because the Special Education regulations defined children like him as “uneducableâ€.
Muhammad only had his father and me as teachers. We had a home programme called Applied Behaviour Analysis that we had drawn up together with an American consultant who flew three times a year to Malaysia to help parents like us. The programme had taught Muhammad the need to comply with and follow instructions. Just before I returned to Malaysia during the 2002 Christmas break to bring my family to the United States, I started making enquiries regarding my son’s schooling.
Knowing how stressful it was dealing with any government agency in acquiring services for my son, be it medical or welfare, I dreaded making the call to the local education agency in Eugene. I told my colleague about this and she recommended that I get the assistance of a non-profit agency here called Direction Services. This is an organisation that assists families of children with disabilities and aims to empower them to be strong and resourceful in advocating for their children’s needs.
I decided to give Direction Services a try, and Betsy, who works as a case coordinator for families of children with disabilities, linked me up with the neighbourhood school, Patterson Elementary, that my son might be enrolled in. She said I could call her anytime if there was anything my family needed. I asked Betsy whether special education for my son in Eugene would be free. She assured me that every child in the United States, whether he/ she is a citizen or not, has the right to free education.
Betsy called back a few days later and informed me that the school psychologist and autism consultant needed to meet me to discuss about my son. She then asked if I knew how to get to Patterson Elementary where the meeting would be held, and if I needed transport to get there.
Through the course of my studies, I learnt that the US Special Education Law is family-centred – the family’s well-being and needs are given the highest priority. How different this is from Malaysia where I had to wait for months for my son’s appointment with a psychiatrist or a speech therapist at a government hospital.
When I met with the school psychologist and autism consultant, we discussed various issues at length – my son’s current education, the kind of services that the school provided, the kind of services that my son needed, and my expectations as a parent.
I was asked to fill an assessment form to gauge the level of my son’s autism. The autism consultant told me that she still needed to observe my son to learn more of his strengths and needs, and how best to provide services for him.
I was informed of the process my family would have to go through for my son’s school admission. This included an assessment of my son, a home visit and an Individual Education Plan (IEP) meeting. I was told that I needed to have a formal assessment report from a psychologist in Malaysia.
I told them that even though we had taken our son to psychologists in Malaysia, no formal assessments had been done. Anne, the school psychologist, assured me that a letter from our family doctor would suffice.
Before the meeting ended, I was offered a chance to visit the special education class there. My first impression of the class was that there were as many teachers as students. I saw a number of students who had severe mental disabilities.
I flew back to the United States with my family just in time for the start of the winter term. My son who was used to outdoor activities in Malaysia cried continually for two whole weeks. Who could blame him? The weather in winter is grey, cold and wet (in the North West, it rains rather than snows during winter).
I was extremely busy when Anne called and assured me that we could meet when-ever my schedule permitted. We agreed that my husband, in his new role as a full time parent, would take my son to the school for an assessment and observation. Anne even offered to baby-sit my daughter during assessment! We also agreed to a home visit on a Saturday as that was the only day I was free.
My son was assessed by the school’s speech therapist and my husband was encouraged to participate in the assessment. The speech therapist asked my husband questions and asked him to interact with my son so that she could take samples of their communication.
Anne accompanied the autism consultant for the home visit. Their main aim was to observe Muhammad’s interaction with his family at home. This would enable them to know more about his strengths and needs.
During the visit, Anne told me that a special education class in Spring Creek Elementary would suit Muhammad better than the one in Patterson Elementary. This was because the class in Patterson Elementary catered to students who were of a level higher than Muhammad. However, Anne assured us that the final decision on Muhammad’s placement would be made by us, the parents. We were invited to visit the class so that the teacher could meet my son.
We had not bought a car yet so Anne drove us for the two trips to Spring Creek Elementary. My husband and I were amazed at the great lengths these professionals would go to, for us.
Suffian was very impressed with the teachers, especially the lead teacher, Annie. We had agreed early on that the teachers’ attitude and the quality of programme in the class would be our main concern. Suffian had a lengthy discussion with Annie about having Muhammad join her class. Annie’s main concern was the difference in culture for Muhammad and the fact that he had never been to school. So Annie requested that Suffian accompany him during the first week of school.
In Eugene, young children with disabilities are enrolled in an appropriate programme two weeks after the disability is diagnosed. This means a home programme with home visits by early interventionists for children below the age of 18 months; a combination of home visits and a programme in a centre for those aged 18 months to three years; and longer hours in a preschool for those between the ages of three and five. Kindergarten starts at the age of six.
When it was my turn to visit the class, Anne picked me up from home for the 15-minute drive to Spring Creek Elementary. After the visit she drove me to the campus in time for my class. She truly exceeded our expectations of her as a school psychologist.
The teachers at Spring Creek Elementary impressed me greatly. They knew what they were doing and the classes ran like clockwork. The students were engaged in various learning activities according to their Individual Education Plan (IEP). The ratio of students to teachers was 2:1.
On the day of the IEP meeting, my family and I walked to the school with our neighbour and friend, Asma, who minded our kids while we attended the meeting. My husband and I were overwhelmed when we found out that Muhammad’s “team members†consisted of 12 people, including two school psychologists, two speech therapists, two physical therapists, and two autism consultants, one each from Patterson and Spring Creek Elementary.
Anne, the school psychologist from Patterson Elementary, led the meeting. She reported the findings of the assessment and observations done on Muhammad. I had been taking classes in assessments for special education and this helped me to understand the results. My heart sank when I learnt that the formal assessment placed Muhammad in the category of severe mental disability.
From the results, the team suggested that Muhammad be placed in a special education class, also known as a Living Skills class, with the option of joining the regular education class for arts and music at a later date. A child with a mild mental disability, on the other hand, might be placed in a regular classroom with daily “pull-out†sessions for one-to-one tutoring by a special education teacher.
Anne asked all the team members if this was the most appropriate placement for Muhammad, and everybody agreed. She then told us that the final decision was in our hands. Both my husband and I agreed that Muhammad needed this level of assistance in his schooling. Annie from Spring Creek Elementary was to be Muhammad’s class teacher.
Next on the agenda was to discuss the services that Muhammad needed. His educational target for the first three months was discussed and it was agreed that Muhammad would receive 45 minutes of speech and physical therapy each week.
(Muhammad does not have any physical disabilities. The physical therapist would work on his fine motor skills so that he could learn adaptive skills and learn how to write.) Services from the autism consultant would be on a demand basis, which means the class teacher and the parents could ask for a consultation whenever needed.
Again, we were asked for the final decision, and both my husband and I agreed. We were told that the IEP meeting would be held twice a year but if we, as parents, felt that changes needed to be made to Muhammad’s IEP, we could request for an IEP meeting any time. Finally, everyone signed the IEP document.
Included in the services was transportation to school and back for Muhammad. Anne had contacted the transportation agency and transportation would be ready for Muhammad by the following Monday, which would be his first day in school.
Then it struck me that Muhammad would start schooling four weeks after my family arrived in Eugene, Oregon, and merely two weeks after his first formal assessment at the school. Coming from Malaysia where a child like Muhammad was labelled as “uneducable†by the Special Education regulations, I could not help feeling overawed.
I was quiet all the way home, deep in thought as this was just the beginning of Muhammad’s schooling experience. I wondered how schooling in Eugene would benefit my special son, and whether our dreams to see Muhammad learning in school with other children would turn out to be the best thing that ever happened to our son.
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