 |
Main Menu |
|
|
 Home Community Members options Search Web
|
|
|
|
|
Survey |
|
|
How many children are on the spectrum in your family?
|
|
|
|
|
News- Page 8
|
Personal Stories : Autistic child brings misunderstanding, small victories
|
|
|
Posted by Sylvia on Friday, April 30, 2004 (19:09:26)
Enquirer.com 25/04/2004
By Linda Oda
I recall with distinct clarity the first time my husband and I were told our son Donnie might be autistic. I remember thinking, "It's just like that Mary Tyler Moore movie - First You Cry." What I didn't realize in that split second was that was just the beginning trickle. He was19 months old and being tested for the first time in a speech therapy room at Children's Hospital in Dayton, Ohio.
While the therapist asked my husband and I questions - "When did he sit up for the first time?" "What was his first word?" - Donnie wandered aimlessly around the room, ignoring toys and the people, before lying down on the floor and falling asleep. I rushed and picked him up. I wondered if the therapist thought I was a bad parent because my child preferred the cold floor to his mother's arms.
What followed over the next couple of years seemed like an endless parade of questionnaires, tests and evaluations. We had evaluations about our evaluations. Everyone was nice, but no one was extremely helpful. We didn't realize it at the time, but there is very little help for parents with children like Donnie. Now 7, my son is still considered nonverbal, although he has acquired some interest in speaking.
Donnie was diagnosed early - shortly after his second birthday - because his father and I knew something was wrong. It took three pediatrician changes before we found someone who agreed with us, so he could be tested. The first two doctors assured us that nothing was wrong, and all children are different. As parents, we knew better. He didn't wave "hi" or "bye" and didn't want to cuddle.
My husband and I would lie in bed at night, wondering if we were killed in a car wreck, if Donnie would even notice we were gone. We physically held him down when he was 21/2 years old to teach him how to kiss. We went through the same procedure for hugs. All of us would be crying at the beginning, but forcing him to do things that seemed unnatural to him would be the only way he would get better.
You probably have seen autistic children at the grocery store or mall. They are the children throwing fits, while their parents are trying hard not to get frustrated. Many of you probably have given their parents dirty looks, like "can't you control your kid?" or even worse, "in my day, we used to spank kids who acted like that." From the time Donnie was 2 until just recently, the few attempts we have made to complete a family activity - as simple as going to the mall or to a fast-food restaurant for lunch - have been a disaster.
In his own world
Autistics like Donnie are completely self-centered, which means left to their own devices, they will please themselves and be happy. If Donnie could have a day to do whatever he wanted, whenever he wanted, he would be the happiest kid in the world.
The difference is very apparent when compared with typical children. Donnie has a sister who is 21 months older. Like most children, Samantha wants to please, and is excited when she completes a task or does well. She wants and deserves praise. She thrives on it. For Donnie, making anyone happy other than himself is a foreign thought. He's not doing anything to be bad or mean; it just never occurs to him that his actions affect anyone else.
My husband and I realized how outsiders really saw him a couple of years ago when we were in a large store. Donnie was too big for a stroller, and he kept lying down and crying as we tried to walk through the store. It was completely embarrassing. A kind employee - who had an autistic grandson - offered us the use of a wheelchair. As we wheeled Donnie from display to display, he made his happy, strange noises. People would smile at him, saying, "What a beautiful boy!"
These were the same people who gave us dirty looks as Donnie lay on the floor, writhing and crying. Then we realized it - we had a handicapped child who people could not accept as handicapped because he didn't have the Down Syndrome eyes, or the cerebral palsy walk, or the obvious aids like a wheelchair or hearing aids.
A friend who has a Down Syndrome boy who is 3 recently asked me when will the crying stop. I told her I couldn't answer that because I haven't hit that plateau yet. I did tell her it does get easier and it does get better as our little guys get older. Both our families are lucky because we live in the Springboro Community School District. When we meet with our school principals and other administrators and teachers, they truly do work with us to give us the optimum education for our children.
Finally, palpable progress
Donnie could not have had a better first-grade year. He stood up in class two months ago and spelled his name. The teacher got tears in her eyes, and his classmates gave him an impromptu cheer. No one but Donnie knows whether he actually enjoyed the praise, but I think he does. He seeks our family members out now.
Instead of preferring alone time, he will bring a book into our bedroom or want to sleep with Mom and Dad at night - something for the first 61/2 years of his life he would never consider doing. He and his sister, for the first time, began playing hide and seek recently. Laughing with others is becoming easier for him. While he loves school, he still hates to color or do rote tasks.
Autism has no cure. But as a family, we are learning better coping devices as Donnie gets older. Together, we are working as a family to get closer and closer to the "normal" range. We even sat for 15 minutes at a Wendy's recently, eating out on a Friday night like a "real" family, as my daughter would say. Could watching a movie in a theater be far behind?
The purpose for writing this is to send two messages. First, if you see a parent struggling with a child in public, rather than criticizing or giving them a nasty look, a kind smile or a quick "hang in there" can make a big difference. Second, for those with autistic children, I would encourage you to keep at it.
You are the best advocate your child will ever have. If you succeed in nothing but making a better life for your child and family, you will have accomplished more than any CEO of a Fortune 500 company.
|
|
|
|
|
|
|
Read More... | 1 comment |   |
|
|
|
|
Personal Stories : Bullied son struck back, got bullied by system
|
|
|
Posted by Sylvia on Friday, April 30, 2004 (00:47:28)
Tucson Citizen 15/04/2004
By Mary Morales Kirpes
As the mother of a child who recently was arrested and taken away from school without my knowledge or consent, I am happy to see that our state government gets it.
I was teaching at a local high school when my son was arrested at Gridley Middle School. The school knew where I was and how to get a hold of me, but chose to take my son to the juvenile detention center and tell me about it later.
I was so upset that they had taken my 12-year-old autistic son away that I didn't know what to do. I left school immediately (crying) and went to the detention center hoping I could take my son home. He had a doctor's appointment that day for a medication change. He was supposed to start this new medication that weekend under my observation.
I felt everyone, including the parole officer, treated me disrespectfully. They would not allow me to see my son or even talk to him. They didn't even care that he had a doctor's appointment.
I tried to get help that Friday afternoon from groups such as Disability Law, Rosemont Service Center, his doctors, teachers, to no avail. I felt so powerless, sad and angry that my sweet baby was in jail. I wasn't allowed to see or even talk to him.
He didn't even have the same rights as an adult who could make one phone call. I was livid and it showed. When I told the parole officer my son wasn't the kind of child who should be put in jail, and when I tried to explain that he had a very important doctor's appointment, she didn't care. In fact, she told me I was living in a dream world because my son is not as sweet as I think he is.
This really angered me. She sees my son for an hour and has him labeled as a criminal. This is a boy who doesn't steal, swear, lie or even start fights. He is autistic.
Even now I cry when I think about it. Let me tell you a little about my son. In elementary school, he was never a problem. He gave his teachers 110 percent. In seventh grade, he went to Magee Middle School, where he was under a lot of stress with changing classes. He was constantly picked on. He often came home crying and telling me that he wanted to kill himself.
This really concerned me, so I put him into a charter school where the behaviors of the other students were even worse and caused him more problems. The following year I took my first full time job as a teacher and put him into Gridley, which I did not care for but had no other option.
At Gridley he again was picked on for his quirky behaviors and was in the process of being diagnosed with Asperger syndrome. He had a behavior plan in place that was ignored, and he was being told by his teachers and parents to be strong. For an autistic child, being strong means hitting those who are calling you names and tormenting you. That is what he did that got him sent to jail. I agree what he did was wrong, but two wrongs don't make a right.
When the incident occurred I asked if anyone had been hurt by his angry attack. I was assured no one was. In fact, he was sitting in his second class after the incident when he was taken away.
I tried to stand up for my son and fight for his rights, but his parole officer labeled me as unrealistic and unconcerned for the victim. What they did not see was that I felt my son was the victim. When children pick on other children to get them in trouble or to get a thrill out of seeing them react, these bullies are rarely punished or even reprimanded. If the bullies are girls it is even worse. As a teacher, I can tell you that the worst bullies in middle school are girls.
I waited so long to write about this is because I wanted my son to first complete his one-year probation. I do believe that the reason they were so hard on him was because of me and I didn't want to make things even worse.
I was, and still am, trying desperately to be heard when no one wants to listen. I was told by his less than helpful public defender and parole officer not to say anything to the judge to defend my child. They did not want to hear about how good he was.
He was seen as violent and that is all they wanted to see. His terms of parole included the following: No playing with other children unsupervised. With autism, he never did anyway. No going out after dark without a parent, which he also never did. Forty hours of public service. Most organizations didn't want volunteers his age. And they wanted us to put him in, and pay for a very expensive program for the most severe emotional problems.
There were more conditions, but the worst was the year's probation fees. This was financially difficult since I was no longer working full time.
In the 2003-2004 school year, I did not take a teaching position so I could be there for both my sons who suffer with Asperger syndrome. This angers me as well. I am forced to quit doing something I love so I can be there for my teenage boys.
This has paid off, though, and now Daniel is in Alice Vail Middle School, where he has never been in trouble and is on the honor roll in regular education classes. The support for him has been wonderful and he plans on going to college to pursue geology.
If it weren't for the fact that my son saw how hard I fought for him and believed in him and insisted that he was good, he could very well have turned into what the state wanted him to be. It seems that Arizona law enforcers aren't used to parents who truly believe in their children, and they wanted to shut me up any way they could.
There are many problems with the school system in Arizona. The fact that parents have no rights to defend their children, unless they have money, upsets me.
I am glad to hear that the Arizona Legislature is making it mandatory to inform a parent before an arrest. This is a step in the right direction, but only a small step. There are many other things that need to be addressed and part of it is the role of the police in many minor incidents.
I remember the days when students were forced to talk it out when there were problems or parents were brought together to work out an agreement for punishment. Our schools are too eager to involve the police in matters that could be handled through the school and with parents.
The schools are taking the easy way out - just call the police, send the child to jail and label them as criminals at a very early age.
I am still very angry and will continue to tell my story, as should others. Parents must find a voice so we can defend our children without ridicule.
|
|
|
|
|
|
|
Read More... | 1 comment | |
|
|
|
|
Personal Stories : Autistics Need Acceptance, Not Cure
|
|
|
Posted by Sylvia on Wednesday, April 28, 2004 (14:30:56)
Madison.com 24/04/2004
By Morton Ann Gernsbacher
This month, which is Autism Awareness Month, I'm hiding my eyes and those of my autistic 8-year old son from the media.
National headlines that describe autism as an epidemic, or pandemic. Public service announcements liken autism to being kidnapped.
A government Web site defines autism as a "devastating scourge." An autism "expert" decrees that autism is worse "than Sept. 11 and AIDS combined." An Autism Society Canada board member proclaims that autism is worse than cancer -- because people with autism have normal lifespans.
Have you -- like my son and me -- ever heard parents say how learning that their child was autistic was like experiencing a death in their family? Have you ever been at the playground when a mother classifies her children, standing right there beside her, as this one who is autistic but these other two who are -- thank goodness -- perfectly normal?
They say that autism entails difficulty taking another person's perspective, appreciating how another person might feel. But when I read or hear such hate speech I wonder: Exactly who has a problem taking another person's perspective? Who can't appreciate the feelings of others?
My son surely can. He understands quite well that there are so-called autism "advocates" who despise autism, who march thousand-fold against it with placards calling for its defeat, its demise. His demise.
Oh, you say, those people don't want to get rid of my son, they just want to get rid of that part of him that's autistic. But research demonstrates that autistic traits are distributed into the non-autistic population; some people have more of them, some have fewer. History suggests that many individuals whom we would today diagnose as autistic -- some severely so -- contributed profoundly to our art, our math, our science, and our literature.
Most poignantly, many autistics affirm that it would be impossible to segregate the part of them that is autistic. To take away their autism is to take away their personhood. Despite our politically correct labeling, they are autistic; they don't "have" autism any more than homosexuals have gayness or lesbianism.
Like their predecessors in human rights, many autistics don't want to be cured; they want to be accepted. And like other predecessors in civil rights, many autistics don't want to be required to imitate the majority just to earn their rightful place in society.
I'm a middle-aged psychology professor who holds an endowed chair at a major research university. But my son has taught me far more than I ever learned in my lab. Every time he walks by a poster avowing that autism must be eradicated, he teaches me grace.
Every time he ignores one of the countless scholarly articles that tower above my desk, asserting he is disordered, he teaches me tolerance. Every time he embraces a world that so frequently rebuffs him, he teaches me unconditional love.
What if next year we celebrate the diversity of social interaction observed within and across all cultures? What if this "awareness" month marked a time to appreciate the variation that all humans demonstrate in their style and competence in communication? What if it heralded an era during which we marveled at the determined focus that in my occupation often wins indefinite tenure but in a precocious child gets labeled as diseased?
Then, neither my son nor I would feel compelled to hide.
(Morton Ann Gernsbacher is Vilas Research Professor and Sir Frederic Bartlett Professor of Psychology, UW-Madison.)
|
|
|
|
|
|
|
comments? | |
|
|
|
|
Personal Stories : Autism presents challenges for parents
|
|
|
Posted by Sylvia on Friday, April 23, 2004 (09:35:03)
Cadillac News 13/04/2004
By Rick Charmoli
Tammy Brintnell is worried if her son ever needed to be helped, he may force away the help he needs.
Brintnell's son Tyler has autism. There are sometimes he does not like to be touched and wants to be left alone. She does not know how Tyler would respond to emergency personnel if he was hurt or in danger.
"There has been a lot of different things about police not being able to recognize autistic people. I don't know if he would respond to the people trying to help him, so a bad thing might happen," Brintnell said. "If they touch him and he doesn't want to be touched, he might freak out."
Five-year-old Tyler suffers from mild-to-moderate classic autism, an often misunderstood disease which appears within the first three years of life. People with autism often do not have normal interpersonal skills, language and communication development and processing of sensory information dealing with the five senses.
To help Tyler cope with the world around him, Brintnell and her family have to stick to a strict schedule. If the schedule is not followed, Tyler's reaction can be unpredictable.
"Say I tell Tyler we are going to Blockbuster on Thursday. That is all he will think about," Brintnell said. "If we don't go because of snow or the roads are bad, he does not forget and an explosion will happen."
Brintnell said this includes running back and forth between the couches with his head to the side while he is pulling on his ears. She said she thinks it is a comforting mechanism.
"I tell him it is all right to get mad or to be mad at me but he can't hit me or break things," she said. "It will usually last five minutes and I try to intervene. If he is overwhelmed, I will let him get some of it out but the crying might last longer than five minutes."
He also will bring out "snake," his imaginary friend. It is how he shows he is angry, Brintnell said. "Snake" is his hand and arm used like a puppet.
"Not that long ago I had some film I wanted to get developed and I found it on the ground unraveled. I asked Tyler how he could do that and he said he didn't, 'ninja snake' did," Brintnell said. "He knew I was mad and later he told me 'snake' was sorry."
Other changes can be less easily controlled and still cause the same reaction. She said when M&Ms changed from colors to black and white, there was a problem.
"When M&Ms turned black and white he had a big fit. He would not eat them, got mad and said those were not the right ones," Brintnell said. "When he is happy, he is super happy but when he is sad, it's the extreme side of emotion."
While Brintnell and her family are just starting to find out what Tyler's likes and dislikes are, she said she is worried about his future.
"It's so hard to predict. He is so lovable and energetic," Brintnell said. "Some of the things now that are cute as a kid may not be cute as a 15-year-old. If kids pick on him for being different, that worries me."
Bonnie James and her family have seen their son grow up with autism. Unlike the Brintnells, James and her family did not know 25-year-old Gareth was autistic until he was 14.
Gareth was solitary, loved to read and had compulsive tendancies and food issues. At first, James said they were told their son might have cerebral palsy. When Gareth was 13, that is when they started questioning if that was truly the diagnosis.
"We took our vacation money to Grand Rapids to a psychologist and sure enough he was autistic," James said. "Like many people, when we heard autistic we thought of kids who are in their own world."
As their son grew up, the James realized he was living in their world in his own way. Misunderstandings with language and words are things the James have to deal with.
"He takes everything pretty literally," Bonnie James said. "His father quite often would get mad because he would ask if he would like to take the groceries in and Gareth would say, 'no thank you.' There are just a million little things like that we take for granted."
Gareth has Asperger's Syndrome or high functioning autism. He is currently living at home with his parents and working toward earning his college degree. According to James, her son is a perfectionist and loves learning.
"I spent my entire adult life trying to explain the world to him. I think a lot of it he gets but I don't think he cares about it," James said. "He is kind, very intelligent and interesting to talk to."
|
|
|
|
|
|
|
comments? | |
|
|
|
|
Personal Stories : A family's nightmare
|
|
|
Posted by Sylvia on Friday, March 19, 2004 (10:42:59)
AJC.com 13/03/2004
By Jane O. Hansen
Moments before Kathi Chandler was ushered into the courtroom, a lawyer tried to brace her for what she was about to do.
In the past year, her son Jeff's behavior had become uncontrollable because of his autism. The 8-year-old had started to bite and scratch himself until he bled. He was biting and knocking down his 2-year-old sister, hitting and biting his brothers or anyone else within reach. Then there was the bookcase incident when he fell in the middle of the night, cutting his head open.
The Chandlers had wanted to care for Jeff at their Alpharetta home, but their insurance wouldn't cover around-the-clock nursing aid. They'd called, researched and pleaded with every public and private agency they could find, without success.
The only way the state of Georgia could help her and her husband, Jim, was for them to participate in a legal charade. They would have to agree to be declared unfit parents, then watch their son be turned over to the child welfare system as if he were an abused child rather than a beloved one.
Inside the courtroom, the 38-year-old mother rose from the defense table and, standing alone, faced the judge. Her voice trembling, Kathi explained they had nowhere else to turn.
The judge sympathized. But Georgia law does not allow Juvenile Court judges to order specific care for a child in need. They can only find a child "deprived" or "delinquent" and order him into the child welfare or juvenile justice system.
So the judge declared the Chandlers — successful professionals and the loving parents of five — unfit parents. Like a modern-day King Solomon, she severed the parents' ties to their child. They were no longer his parents. The state was.
"Nobody should have to make this decision," Kathi said less than an hour later, crying. "I've handed my child over to somebody else."
But there would be more than just the pain of handing Jeff over to child welfare. Kathi had no way of comprehending that day what would happen once the state took her child.
Across Georgia, some families unable to find or afford mental health care for their children are going to court and giving them up to the state, according to Juvenile Court judges.
No one tracks how many parents in Georgia have given up their children. But nationwide, parents handed over an estimated 3,680 children to child welfare agencies in 2001 for the sole purpose of getting them mental health treatment, according to the General Accounting Office, the research arm of Congress.
Jeff's autism is considered a developmental disability, but it caused behavioral problems of the sort that are often treated by mental health professionals.
Georgia pays for residential treatment for some emotionally disturbed and developmentally disabled children and teens, but hundreds more are turned away because of a shortage of beds. With no help at home, parents say they have had to give up their livelihood to care for a child, store a baseball bat under their bed to protect themselves against a disturbed adolescent, or lock up kitchen knives to protect a child from self-injury.
"The real commentary in this state is the terrible condition of mental health services for children," said Fulton Juvenile Court Judge Sanford Jones.
'It's just hard'
For the Chandlers and families like them, mental health care for their children comes at the cost of a supreme sacrifice.
Jeff qualified for one state program that might have paid for home nursing care. But that program doesn't have enough money, and Jeff remains on a waiting list. Another state program under the same agency did have funding for therapeutic foster care for Jeff, but only if the Chandlers gave him up as their son. That's the path the Chandlers took.
In the half-year he has been in therapeutic foster care, Jeff has gained weight and looked well when they've seen him. They say they are grateful to the woman who runs the home.
"She's impressive. I don't know how she does it," Kathi said of the Stone Mountain woman. But their visits have been infrequent — no more than once a month — and the Chandlers have to go by the foster mother's schedule, "which I hate, because he's my child," Kathi said. Still, they're grateful for every chance to see Jeff. Until it comes time to say goodbye.
"It's just hard," Kathi said, her voice breaking.
Jeff rarely speaks in a logical manner, if at all. But his mother recalls one painful moment last fall when he did speak.
The family had piled into their SUV and driven to the Stone Mountain foster home to spend a few hours with Jeff and take him to a nearby Taco Bell for lunch. When they arrived to pick him up, Kathi walked into the house.
"OK, Mommy," he said when he spotted his mother. "I'm ready to go home."
Jeff's twin
Kathi and Jim Chandler built what many would consider an idyllic life. The handsome couple met in Ohio, where both went to college. Today she works as an information technology manager; he's an inventory accounting manager.
In the years before Jeff's behavior worsened, they bought their sprawling stucco and stone house in a middle-class Alpharetta development.
It wasn't their plan to have so many children, but today they have five: Matt, 13; Chris, 12; Jeff and his twin, Tim, now 9; and tiny 2-year-old blond Jacki.
Jeff and his twin were born premature, with cerebral palsy. Tim today is an outgoing child working at grade level in school, and unlike Jeff, he can walk short distances without aid. From the beginning, Jeff's life was the greater struggle.
At 3 he began showing signs of autism. "He'd put his hand in his mouth and bang repeatedly on his wrist," Kathi said. "He'd echo back whatever you'd say."
Gradually Jeff's behavior got worse. By the time he was 7, he could no longer tolerate crowds. At a baseball game, he repeatedly bit himself and ripped the skin on his arm. He moaned and screamed. At a Cub Scout picnic where Tim was to receive an award, Kathi had to sit in the car with Jeff after his moaning disrupted the ceremony.
The Chandlers eventually stopped going out as a family.
Kathi and her husband talked about one of them quitting work, about selling their house, their two cars.
"We're successful, we have money, we have a family, we should be able to provide him everything he needs," she said.
Yearlong struggle
A large box of blue file folders documents the Chandlers' yearlong odyssey seeking help — the letters Kathi wrote, the names and numbers of organizations she called, the rejections.
First they became excited about a state-of-the-art treatment program for autism. But they couldn't afford the cost — $1,800 a week — and insurance wouldn't cover it.
A few months later they heard about the Georgia Academy for the Blind in Macon, where Jeff could board during the week and autism and special needs experts could work with him day and night. "I said, 'How do we get our son here?' " Kathi said.
But school officials in Fulton County, where Jeff had been attending special education classes, refused to allow him to transfer to Macon, saying they were meeting his needs, at least his educational ones, school records show.
"I said, 'But there's more to it than that,' " Kathi said. " 'He comes home, and we don't know what we're doing.' "
They also had heard about another program, funded through the state, that might pay for nursing care so the Chandlers could keep Jeff at home. Kathi's hopes rose when staff at the Fulton mental health board contacted her and, after a two-hour interview, told her they would recommend the Chandlers for funding under the Mental Retardation Waiver Program.
"I was excited to think I'd finally found the key to unlock the door," she said.
After several weeks, she began leaving messages for people who never called back.
Eventually a woman from the mental health board told Kathi that her son had been placed on a waiting list.
What she didn't tell Kathi was that nearly 4,000 others were waiting, too.
'Got to do something'
The breaking point came last spring. While his family slept, Jeff climbed the bookcase in his room and fell backward. They found him the next morning in a pool of blood.
"We finally said, we're not doing what he needs," Kathi said. "We're not doing anything for the family. We've got to do something."
A neighbor recommended that the Chandlers call the Department of Family and Children Services and ask whether Jeff could be placed in a therapeutic foster home. The call would launch a chain of events that would put Kathi in a courtroom, consenting to give up her son to get him help.
Today she wonders how they could have been so naive. "My husband always felt that because we initiated it, we could go in and change it," she said.
But once they got that train moving, there was no stopping it. What was initially a legal fiction would become their reality. Within days, the child protection agency took steps to remove Jeff from his home, sending Kathi a form letter used to open child abuse investigations. "I am writing to inform you that our agency has received a complaint regarding you and your family," the letter said.
On Oct. 15, Jim and Kathi Chandler went to Juvenile Court to formally give up their son to therapeutic foster care. Jim had to leave before the hearing began to pick up the couple's other children.
When Kathi walked into court alone, she realized there would be no turning back.
She'd been told a formal finding had to be made that her child was "deprived." The judge had no other legal option. According to the General Accounting Office, only 11 states allow parents to retain custody when they voluntarily place their children in the child welfare system or juvenile justice system. Georgia is not one of them.
"They did try to soften the blow to me in how they worded it," Kathi said. "But the bottom line is, that's what their argument is — we've deprived him."
Fulton Juvenile Court Judge Nina Hickson said she would prefer not to have had to make that ruling. "It is like this concept of legal fiction," Hickson said. "In this instance, you have parents who, because of their great love and concern for this child, are having to give up their legal rights to this child because it's the only way for him to get the care he needs."
The judge agreed to place Jeff in state custody with the understanding she would return Jeff to the Chandlers if they found help.
Kathi broke down in court that day, but the judge could see the resolve in the mother's face. "It was devastating," said the judge, who is on leave while being investigated for leaving her own 4-year-old daughter home alone one night.
Kathi drove herself home that day, crying most of the way.
'Chose his needs'
She still has a hard time grasping what they did.
"Our choice was to keep him home and give him our love, or give him what he needs," she recently said. "We basically chose his needs over our love."
People have quit asking her where Jeff is, but she sometimes wonders what they think.
"I don't know how people could understand," she said. "Because they haven't lived it, they don't know what we went through on a day-to-day basis, the roller coaster of trying to get help and thinking we would and our hopes being dashed."
Lately she has begun to worry they may never be able to undo what they've done. Her employer of 17 years has talked about moving her back to Ohio.
She asked the child welfare agency what would happen if they had to move. Could they get Jeff back? "They said, 'We don't know. You've been found unfit,' " Kathi said.
Not everyone down the line had been clued into the charade. The first caseworker assigned by the agency had been sympathetic. But the second was used to dealing with child abusers. When she heard the family had visited their son at the foster home, she told them that would have to stop. Child welfare policy prohibits it.
Rather, she said, they'd be restricted to a one-hour supervised visit each month at the agency's office, just like everyone else on her caseload.
"I don't consider myself a child abuser," Kathi said. "I guess I was pretty stupid to think that because we'd chosen this route, that we wouldn't be held to the same rules."
Beverly Jones, the head of the Fulton Department of Family and Children Services, called the caseworker's position "unacceptable." "Most workers would be delighted that a family would want to see a child as often as possible," she said.
Jones pointed out, however, that the vast majority of children under her agency's supervision are victims of abuse or neglect.
December reunion
When Jones learned from a reporter about the family's plight, she intervened, and just before Christmas, Jeff came home for a glorious, chaotic visit. Petite Jacki pushed him into the bright, airy kitchen in his wheelchair, surrounded by two barking dogs and a pack of kids.
Everyone talked at once over lunch, while Jeff pulled the cheese off his pizza and gnawed at the crust. "He loves to eat," said his oldest brother, Matt.
Occasionally his father wiped the sandy-haired boy's mouth with a cloth. When he slumped in his chair, Matt gently lifted him.
They told Jeff he looked good in his dark pants and red sweater, and they teased him about his Backstreet Boys hairstyle, which his caretaker had carefully molded into little spikes.
Jeff's brothers helped him unwrap a singalong keyboard, although Kathi had forgotten batteries. Jeff loves music, and when he lived at home, he'd listen for hours to a Madonna CD. "He listened to it real loud," Matt said. "It got to a point we had to tape down the volume control."
The final gift was a robot, and Tim scooted to the floor, shoulder to shoulder with his twin. "Jeff, what do you want to do?" he asked. "You want to play with this?"
Jeff was engrossed in the beeping, flashing robot, clapping his hands and hitting his left fist over and over with his right hand. "That's the autism," Kathi said. "It's just the stimulation he needs."
At times that day Jeff sat on his mother's lap, hugging and cuddling with her. When he started smelling bad, she excused herself to change his diaper.
When the seven crowded on the couch for a family portrait, laughing and squirming, the older boys arguing and pushing, the Chandlers were a picture of normalcy.
But that too was fiction. At the end of the day, Jeff would return to his foster home.
No ultimate solution
Last month, Jim Chandler had a brainstorm. The state had been sending Jeff to a second foster home for one weekend each month, to provide his foster mother some relief. Why not send him home to his family instead? The child welfare agency and the court tentatively agreed. Even the caseworker who was previously unsympathetic had become supportive.
But the Chandlers see no ultimate solution. They're still on a waiting list with little hope of getting the support they need to bring Jeff home. Kathi heard Thursday that the state may move Jeff to yet another home. His Stone Mountain foster mother — with whom the Chandlers have a good relationship — said the money she got for Jeff was being reduced because he had done so well in her care. The state has been paying $170 per day for Jeff's care.
Kathi later heard the matter had been resolved, at least this time.
And what if someone decides that if the Chandlers are unfit to care for Jeff, they must also be unfit to care for their other children?
"That's been an absolute fear of ours since we made that first call," Kathi said.
But she said it would help if the court followed through and issued an order letting them bring their son home that one weekend a month.
"At least he'll still know that we're here," she said. "That we haven't abandoned him."
She wants to believe she did what was best for him. "But when it comes down to it," she said, "I'm his mom. I should have done more."
And she can't help but wonder what Jeff would say to her if he could. "If I were him, I think I would say, 'It would have been more important for me to be with my family,' " she said. "If he could talk, I think he'd tell us, 'It was terrible for you to leave me.' "
|
|
|
|
|
|
|
comments? | |
|
|
|
|
|
Latest: 
New Today: 0
New Yesterday: 0
Overall: 7452
Members: 0
Visitors: 8
Total: 8
1: