wonderful article on a family's struggle with their child's

Sadly this story is a reality for some parents… I have worked with this mother in several of my daughter’s classes and have seen her faith, courage and undying love for her children. There are pictures on the Register’s website but I can only copy text here..The pictures are so touching, they truly show a little boy lost….

http://www.ocregister.com/accent/
Little boy lost
A family tormented by their son’s mental illness deals with fear, denial and shame and tries to move on

July 22, 2001

By THERESA WALKER
The Orange County Register

He doesn’t look happy in the picture.

His mouth refuses to smile; his big blue eyes stare out in fright.

It’s as if someone, or something, is after him

His mother calls it “my little lost-child picture.”

Her son is 5 in that photograph, a kindergartner posing for his school picture.

And already, his childhood was on its way to being lost.

Lost to mental illness.

How could that be, with someone so young?

Karen Blanco asked herself the same question about her boy, now 14 and living in a residential treatment program in Santa Barbara.

No one expects to see at that tender age the kind of psychotic behavior that soon plunged the Blanco family - mother, father, three boys and one girl - into long years of fear, uncertainty, denial, shame.

Perhaps that’s why it took so long for her child to get the help he needed.

The pediatricians and the specialists failed him. The school system failed him.

The one constant in his life that didn’t let him down was his family - though it has been a mighty struggle for them.

His father, for the longest time and still to some degree today, denied his son’s disability.

His brothers and his sister have suffered their own dark moments, like the time he chased them around the house with a knife.

His mother? She was always his best champion, the one who fought the hardest for him, the one who feels obligated to be an advocate for other children and their families.

Recent evidence shows that far more children suffer with mental illness at younger ages than had previously been suspected.

In January, the U.S. surgeon general released a report that indicated the nation is facing a crisis in mental health for children and adolescents. According to the report, 1 in 10 youngsters in the United States struggle with a mental illness severe enough to impair their development.

Fewer than 1 in 5 of those get the treatment they need.

And even though science has determined that most mental illness is caused by biological brain disorder, society stigmatizes those who can not help being the way they are any more than a diabetic can or a cancer victim can.

The Blanco case may stand out because of the early onset of his illness, but what his family has gone through is not that unusual. Not when a mental disorder is the diagnosis.

Karen Blanco knows this because she hears it every week at the support group she attends religiously. Most of the mothers and fathers who come are trying to cope with sons and daughters who are adults, whose illnesses didn’t manifest themselves until adolescence or early adulthood.

Now and again they’ll be joined by someone whose mentally ill child is still a child. But those parents tend to come once, hear of the lifelong struggles of the other families, and not return.

Parents typically do not seek help until some crisis forces them to. And even then, they feel ashamed.

This is why the Blanco family is willing to come forward and put a face on childhood mental illness.

It’s the face in the photographs that line the walls of the second-floor landing in the Blancos’ home in San Juan Capistrano. It’s the face of Byron Blanco.

Denial at first

Karen Blanco knew something was not right with her firstborn by the time he was a toddler. He wasn’t making any effort to talk like normally developing children do.

Her husband insisted nothing was wrong with his son. Both he and his father, Cuban refugees who found success in business ventures here and in Miami, would bounce little Byron on their knees and talk about how he would follow in their footsteps someday. He already was named after them.

Developmental problems just didn’t occur in their world. If Karen Blanco voiced her concerns, her husband dismissed them as the fantasies of a bored housewife.

Even though the pediatrician said Byron should be talking by now, she didn’t pursue help.

“You go through this stage of denial: ‘Oh, he’ll grow out of it.’ ‘He’ll bloom in his own time.’ ‘He’s just shy.’ “

The boy didn’t say anything until he was 4, and then it was garbled speech that couldn’t be understood. People would tell his mother it was because she didn’t make him say his words properly: Don’t give him milk, they’d instruct, until you force him to say the word right.

Once he started school, it became increasingly clear to his mother that more was going on with Byron than parenting techniques could fix.

In preschool, he’d cry at home and ask not to be sent back.

In kindergarten, the crying kept him up all night.

Karen Blanco sought advice: His pediatrician said Byron needed speech therapy. So did a school psychologist. A pediatric neurologist told her something must have happened at birth, but he didn’t know what and good luck to you just the same. An examination at Children’s Hospital of Los Angeles yielded the recommendation that Byron get physical therapy.

If she raised the specter to his doctors and his teachers that it might be something more severe, that maybe it’s autism, her notions were pooh-poohed, much the same as they were by her husband. Byron’s teachers would say, he’s just shy, he’ll be fine.

Karen Blanco felt belittled. “It was like I was this neurotic mother.”

Finally, at the suggestion of a classmate’s mother, a mother who also happened to be a special-education teacher and had observed how Byron shunned his peers, Karen Blanco had him assessed by doctors at the University of California, Los Angeles. They told her he was autistic.

By the time Byron was in a special day class in first grade, the family had grown to include two more boys and a girl. They had moved from the San Fernando Valley to San Juan Capistrano. But Byron wasn’t getting better.

He was starting to see and hear things that scared him - and scared his mother. He’d run down the hall at night, screaming that he saw a face that was going to bite him.

“One night he came out and he told me that the pages of his books were turning by themselves,” his mother recalls. “He got real agitated.”

She knew for certain that more than autism was going on with Byron. She never heard any of the other mothers whose children were autistic talk about hallucinations. And no one else wanted to hear her talk about it.

“Nobody,” she says, “can believe that a child can be so ill.”

Instead she’d try the discipline techniques she read about in parenting books, like behavior modification. If Byron was going on and on talking about aliens, she’d pull over the car and refuse to budge until he’d stop.

But he did get a referral from a school psychologist for counseling that the county paid for. Karen Blanco says she had to prove her son was going downhill before getting that service, and it lasted only a year before it was eliminated by budget cuts.

Byron was bright, and he was doing better academically, so in third grade, he changed schools and moved into a regular classroom that included the services of a special-ed teacher and an aide.

He was 8 now. And on the edge of disaster.

He’d draw violent pictures that freaked out his youngest brother, Grant. When he played with his baby sister, Megan, four years his junior, Byron would bombard her with his bizarre ramblings. Unnerved by his behavior, Megan began to absentmindedly pluck out her eyelashes.

Her other children would ask Karen Blanco, “Why can’t you fix Byron?” She’d explain that there was something wrong with his brain, that they were trying to help him.

At home, he would frighten them. In public, he would embarrass them.

Her husband would tell the therapist that Byron’s behavior was Karen’s fault because she didn’t discipline him correctly. He just didn’t understand, Karen Blanco says; it was too foreign to him.

She was the one to whom her son confided about the voice in his head that was telling him to do things. She was the one who turned again to the doctors at UCLA. This time they hospitalized Byron for two weeks and treated him for depression, prescribing the anti-depressant Paxil.

They also discussed psycho-tropic medications, but neither of Byron’s parents wanted to go there. It scared Karen Blanco, even though she knew her son was hallucinating. She worried about side effects and the long-term toll such powerful drugs might have on her little boy.

There was something else, too, at the back of her mind.

“That would have made it all too real,” she says. “There was part of me that said that would make it really, really serious. True mental illness. Long-term mental illness.”

More real than having to leave him in a locked-down psychiatric unit and head back home. More real than the loneliness and isolation she felt. There was no Ronald McDonald House for her to stay in nearby and find comfort in support, like there is for parents of children hospitalized with serious physical illnesses.

“There’s nobody that puts their arm around you and says, ‘We are so sorry your child has been stricken by a dreadful brain disease.’ You get none of that.”

Her sister and mother knew something was going on. They would listen to her, but they didn’t fully comprehend Byron’s behavior. Not until they were visiting the time she had to spend an entire night in Byron’s room, blocking the door with her own body so he couldn’t leave in his heightened state of agitation and paranoia.

For two years, the Blancos paid for a private psychiatrist to treat Byron and Megan. Their insurance wouldn’t cover the $25,000 cost, so they spent what would have been Byron’s college fund.

Megan got better; Byron didn’t. His parents crossed that line in the sand and allowed Byron to be treated with a succession of anti-psychotic drugs. He continued to deteriorate.

By now he was 11, starting puberty and becoming uncontrollably aggressive. Karen Blanco had started attending a support group sponsored by the National Alliance for the Mentally Ill in Orange County. She was the only one with a mentally ill child that young.

He was talking about being tormented by the voices of both an angel and a devil inside his head. About visions of men spinning him around on a wheel and killing him with knives and guns. About his desires to commit suicide.

Karen Blanco took him back to UCLA. And in December 1998, Byron went to live full time in a residential treatment center in Santa Barbara.

Residential care

The place is called Devereux, named after a woman who launched her first school for developmentally disabled children in Philadelphia in 1912.

It’s been Byron’s home for the past 2 1/2 years.

Devereux California offers residential and community-based programs for individuals from ages 10 into their 80s who have a range of disorders - developmental, psychological, emotional, behavioral, neurological.

It looks like a community-college campus, 33 acres neatly landscaped and bordered by swaths of wild land and the beach near Isla Vista. There are no fences or gates, no locked wards. They don’t accept kids with a tendency to run off, fire-setters or juveniles from the criminal-justice system.

Byron shares a room in the Kellogg Cottage with a teen-age boy a few years older. The airy, roomy dormitory houses 12 youths. Byron moved in a few months ago when he turned 14.

On a recent visit, his mom spots a page from a Marvel comic that shows a cartoonish character in a sinister pose - fangs bared in a skull-like face, bloody, red eyes glaring, long, sharp claws ready to attack. It is tacked to the wall and bears the message: “Slash & Win.”

“That’s gruesome,” Karen Blanco says, turning to her son. “Is that your roommate’s?”

“No,” he says, oblivious to the concern in her voice. “It’s mine.”

She tells him she doesn’t like it. But it’s his room, and there’s nothing she can do about it.

One weekend a month, Karen Blanco and her other three children climb into the family van with plenty of snacks and sleeping bags for their motel room and drive the three hours up the coast to visit Byron. Her husband always joins them later in the afternoon on Saturday, after he is done trying to collect rent at properties they own in Los Angeles.

Byron gets to spend the days with them. The family always follows the same routine each visit because Byron needs that sense of predictability: stay at the Pacifica Suites, eat the continental breakfast, go to the Le Cumbre outdoor shopping mall, swim at the hotel, eat dinner at Sizzler.

But Byron’s behavior can be unpredictable.

“Sometimes Byron’s out of control; sometimes the weekend’s bad,” says his brother Taylor, 13, who was the closest to Byron when they were little. “It kind of gets old. But I mean, I like seeing Byron and stuff. I miss Byron, but not his behavior. That was kind of crazy.”

Taylor is not without his own problems. He, too, is struggling with a mental-health disorder. This year, he was diagnosed with bipolar disorder, what society used to call manic-depressive.

Lately, his mother has worried more about him than about Byron, because at least Byron is at Devereux. Taylor is more of a loose cannon now - sometimes he’ll fly into rages, cry uncontrollably, engage in risky behavior.

He is taking medication, and, again, it’s a juggling act to get the right dosage, his mother says.

Where the early onset of Byron’s disorder was unusual, children as young as 7 can develop bipolar disorder.

Karen Blanco is convinced that in the case of both her sons, their disorders are genetic. Looking back on her own childhood, she believes her father’s alcoholism masked a mental illness. And she learned not long ago about a great-uncle who spent his life institutionalized.

Still, she says, she feels that people who don’t understand mental illness will look at her with blame. “I feel like I’m on the hot seat all the time - ‘It must be something you’re doing or not doing.’”

On this visit, Byron appears to be in a good mood. He makes jokes, like when he mentions enacting his plan of global takeover when he is discharged from Devereux.

“Just kidding,” he says with a smile.

It’s hard to know when Byron is being sarcastic or when he is saying something he truly believes. He talks fast and loud, rambling on one minute, making some pointed remark the next.

He tells how he named his fish Pepsi because of its coloring, brown with red, blue and white stripes.

“It was either that or the Arsonist Who Burned Down Devereux,” he says. “But they wouldn’t let me name it that.”

Being placed at Devereux, so far from his family, has been hard for Byron to accept. As has his disorder.

He knows he has a problem and will call himself “crazy” and “weird.” His diagnosis is a mixed bag: psychosis, depressive disorder, autistic disorder.

He also has asthma and is considered obese. The medications he must take changed him from rail thin to pudgy and pot-bellied. When the dosage was lowered, he started picking at his skin, convinced that aliens had planted eggs in his arm.

“You do this juggling act with the medication,” Karen Blanco says. “You lower it, but then he has these psychotic episodes. But we’re worried about his weight gain and his cholesterol.”

The drugs also make his legs jiggle up and down like a nervous groom’s when he is sitting.

His meds for the day are ready to pop from stenobook-size bubble packs that Karen Blanco carries with her from the hotel room to the van.

At the mall, his mom buys him a couple of fantasy-genre action figures, a video game and a pack of cards for the role-playing game “Magic.” They eat pizza and buy cookies at Mrs. Fields. All this is part of the set routine.

Megan gets lip gloss, Taylor a video game. Grant sulks because his mom won’t buy him a $50 pair of tennis shoes. They look like any other family on a shopping trip. But there are tell-tale moments.

When Byron walks off by himself to another video-game store, his mother looks around in a panic, as if a toddler had wandered off.

“Where’s Byron? Where’s Byron?” she asks the other kids until she spots him up ahead.

In a pet store, a bird squawks, and Megan jumps. “Oh,” she says with a laugh. “I thought that was Byron.”

Megan says she misses having Byron around. When he was home, she says, “He was scary. But now that I’ve lived 10 years with him, he’s not so scary. I’ve gotten used to him.”

Grant still gets embarrassed by his brother’s behavior. At the mall, when Byron starts talking loudly, Grant makes a point to walk well ahead of his family.

Yet it was Grant who stood in front of his entire school at the Thanksgiving assembly last November and spoke about his brother.

“We were blessed with working minds, but Byron was not,” Grant told his schoolmates. “My parents were blessed with four wonderful children. Byron’s blessed because he has Devereux, and he is not alone.”

Progress is made

In a psychological assessment dated last May, Byron’s answers to sentences he was asked to complete show his anger and sadness.

“My only trouble is … Being here.”

“People can’t make me … Happy.”

“I’m proud of … Nothing.”

“I get praise when … What the hell is praise?”

And yet there are responses the psychologist notes as positive:

“I’m happiest when I … Am home.”

“My father and I … Used to play football.”

“My mother and I are alike because … We both read J.R.Tolkien’s books.”

Byron has made progress at Devereux. He still has hallucinations, he still gets paranoid, but he is learning coping mechanisms that his parents and his counselors at the center expect to help him function better in society.

Robert Thomas, program administrator for Miramar cottage where Byron lived for two years, says Byron has been taught breathing techniques to calm him when he’s feeling anxious and activities to ground him, such as counting backward and counting forward.

“He seems to be able to tolerate (the hallucinations and the voices) because he knows that happens to him. He’s kind of come to terms with it.”

He’s also learning independent living skills, in preparation for the day when he is an adult.

“He said when he reaches his goals, he hopes to move to a group home and then from there, back home,” Thomas says.

Whether Byron could ever live on his own is uncertain. His parents believe he will always have to be in an environment that offers support services, such as a group home.

The state picks up the lion’s share of what it costs to keep Byron at Devereux. Of the nearly $6,000-$7,000 monthly tab, the Blancos must pay $446 until he turns 18. An additional $700 from Supplemental Security Income for Byron also helps offset the cost.

His parents consider Devereux a blessing.

“If it wasn’t for Devereux,” his father, Byron Blanco Jr., says, “his future would be so bleak. He would have no future.”

He wants his other children to maintain regular contact with Byron as they grow up so that once they are adults, they don’t shun him but find ways to include him in their lives.

He knows how easy it is to distance yourself. For the longest time, Byron Blanco Jr. stuck his head in the sand. He admits how scared and ill-equipped he felt in dealing with his son.

At first, he fought the notion that something so terrible could be wrong with Byron. Even after he accepted it, he had no solutions, so he delegated Byron’s care to his wife. He is now 100 percent supportive of the decisions she makes, but he can’t bring himself to attend the weekly support group that Karen Blanco is so dedicated to.

“It’s too sad. You come out of there so depressed because everybody has a major problem with their son or their daughter. There just doesn’t seem to be a happy ending.”

Yes, it is depressing, Karen Blanco says on a night when she hears one woman tell how her grown daughter went on a shopping spree and charged a $2,000 custom-made platinum wedding ring.

Another seeks advice on how to hospitalize her daughter, who keeps disappearing for months and years at a time. The mother was going to Las Vegas to pick her up after she was jailed in Alabama and the judge decided to send her to Nevada.

Most of the family members have been attending for a long time. Others are newcomers. They share their stories and get sage advice from one another and from the licensed clinical social worker who leads the group.

What Karen Blanco takes away from the meeting is a sense of support and, on occasion, a feeling of empowerment. It was through the National Association for the Mentally Ill group, she says, that she learned how to navigate the system and advocate on behalf of Byron.

A sense of responsibility keeps her coming, too: “What if there is someone here one night with kids as young as mine and I’m not here to help them? I feel obligated.”

She also joined the NAMI board of directors in Orange County and more recently was appointed to a position on the county’s Children’s Services Coordination Committee, which had been looking since September for a parent with a child who is receiving mental-health services.

Her dream is to see parents of the mentally ill working as partners with the agencies that are here to serve their children.

“In order for that to happen,” she says, “people have to see these children suffering.”

Just take a look at Byron’s picture.

––––––––––––––––––––––––––—

Fall 1995, age 8: (Excerpts from mother’s journal) Third grade very difficult for Byron. I moved him to a different public school in the San Clemente area where we could try him in a class where he mingled with regular kids more. He became increasingly psychotic. Sometimes, when I would drop him off for school, he would walk away talking and gesturing to himself and acting very bizarre. From March to July 1996, he received counseling services from Orange County Mental Health, Children and Youth Services. In January 1996, he complained of a voice ordering him around in his head. UCLA doctor thought the auditory hallucination was an isolated incident, so she did not prescribe medication. Byron became anorexic, refusing to eat anything because food looks so bloody to him. He would just lie on the couch, curled into a fetal position and cry. Finally, I placed him into UCLA as an inpatient for about 12 days in April 1996. Paxil (an anti-depressant) prescribed.

Fall 1996, age 9: Fourth grade year, Byron attended Carl Hankey Elementary public school in Mission Viejo in a Special Education Class. Difficult summer. On the Fourth of July, he became terribly agitated and aggressive, saying the fireworks were an alien invasion. I could not calm him down, and he really freaked out the other kids in our family with that one. In October and November, he cut his own hair three or four times and even cut his own eyebrows and eyelashes. He pushed his siblings down off beds or over in chairs, biting and choking them. Began taking Tegretol, an anti-convulsant, to control the aggression. It didn’t seem to help. In January 1997, he began seeing a Tustin psychiatrist weekly and expressed much paranoia about a disease he believed was attacking him at school and that the only way he would be safe from it would be to bathe in lemon or lime juice.

Fall 1997, age 10: In fifth grade, still at Hankey School. Aggression toward siblings continued. Became anxious at night about someone breaking into our house with a chainsaw or bombing our car. In November, he ran through the house at night, telling me he saw an image of a living brain that talked to him. He was on Risperdal, an anti-psychotic, and other medications, but they didn’t seem to help. I would find him weeping in his bed at 4 a.m., telling me he had no future. He once told me: “I feel like I am cracking up, like I am really insane.” Talked of suicide or of me killing him to put him out of his misery. In March 1998, he held a knife to his neck, threatening suicide until I took it away from him. Distraught and hopeless.

Fall 1998, age 11: Sixth grade, Byron moved on to middle school, still in special ed. The normal kids figured out in about two days that he was different, and they teased and tormented him. We had terrible behavior with him - one time he ate ants off the ground at a soccer practice, tried to play with fire on the stove, hit a woman’s car hood in the parking lot when she was actually sitting in it (and, boy, was she angry!) He ran away for about 30 minutes at a mall when he heard me say we might have to change his medication. Once, he stayed up all night with visions of men spinning him around on a wheel and killing him with knives and guns. He complained of voices of an angel and a devil in his head, arguing so persistently and annoyingly that he could not make a decision at all. In December 1998, he was admitted to Devereux in Santa Barbara.

Fall 1999, Age 12: Seventh grade at Devereux. I took this picture so that I could keep up the tradition of having yearly school pictures. At this time, he has been at Devereux for about nine months. It is taken in the school parking lot, and he is holding some cookies I brought him for the boys in the dorm. Note the appropriate T-shirt design he is wearing. Byron always loved dinosaurs and aliens and loved collecting things around those themes.

Fall 2000, age 13: Eighth grade at Devereux, we took his photo at the park on a day we came up to visit him. I could not get him to smile for it and he said to me: “I don’t want to smile because I don’t want people to think I am happy up here, since I am in hell.” It’s almost impossible to get him to smile for a photo these days.

December 2000, age 13: I took this photo in our back yard in San Juan Capistrano. Again, he refused to smile. He has put on weight here because they had to raise his medications to treat increased psychiatric symptoms. One of the side effects of the medications can be weight gain.

June 2001, age 14: My husband took this photo of us outside of our hotel.

It’s difficult to diagnose mental illness in kids

Dr. Kenneth Steinhoff directs child and adolescent psychiatry at UCI Medical Center. He spoke about childhood mental illness.

Q. Are there certain types of mental illness that are more common in children?

A. Anxiety disorders - generalized anxiety, separation anxiety - obsessive-compulsive disorder. Depression is also common in kids. It’s increasingly being treated with medication.

It’s rare for a young child to have sustained auditory hallucinations. And schizophrenia is quite rare below the age of 14.

Q. What about bipolar disorder?

A. The problem is looking at the symptoms of a child; it’s hard to tell if it’s attention deficit-hyperactivity disorder or whether it’s truly bipolar. You have to rely on family history and other things as well as symptoms.

Q. Some studies and reports say bipolar disorder can occur in children as young as 6 or 7.

A. I don’t think anybody knows for sure how young it occurs. If there’s a strong family history and the child is showing early symptoms - unprovoked changes in mood that are sustained for period of time, irritability, grandiosity, inability to see consequences for actions. It has to be taken together in a pattern.

Q. Medicating children is controversial, too.

A. Recently there’s been a huge increase in the study of medication treatment for children.

Eighty percent of medications used in children, not just in mental health, are off-label. Off-label means they have not been certified by the Food and Drug Administration for use in that particular age group or for a particular disorder. That doesn’t mean they can’t be used, but they just haven’t been studied or gone through FDA approval for use in kids.

In 1996, the FDA offered patent extensions for some of the well known medications if they’ll go through the FDA process for use in children. That sparked a lot of research.

Before, you wouldn’t know whether the medication was necessarily safe in a child, where now you get a large number of children that have been studied so that you know that it is safe and relatively effective.

Q. Is the possibility of a mental disorder difficult for a pediatrician to detect?

A. There’s quite a bit of literature to support that primary-care doctors have a hard time picking this stuff up. In most health systems, they’re too busy, they need to see more patients, need to solve the immediate problem and not fish around for more.

Q. What about resources for treating children?

A. Most insurance companies carry a bias against psychiatry. Many people treating children are not child psychiatrists. The typical psychiatrist has two months training in child/adolescent psychiatry in their entire four years of training.