(L-R) Anthony, Giovani, Alison and Terry Caliendo.
Six-year-old Anthony Caliendo smiles as he watches his mother cradle his 3-month-old brother, Giovanni, in her arms. “I’m his big brother,” he says proudly as Alison Caliendo lifts her little one onto her shoulder so she can gently burp him.
The boys’ father, Terry Caliendo, beams as he watches his family from the kitchen of their northwest Las Vegas home. Standing outside at the window, a family dog looks on.
It is the kind of scene Norman Rockwell loved to paint – everyday Americana with all its charm and warmth. It is also a slice of their family life that Alison and Terry Caliendo admit doesn’t at all suggest what they have experienced over the last five years.
Management of Anthony’s erratic behavior, which manifests itself in conduct ranging from rages and taking things that are not his to impulsivity and problems telling the truth, has been at the forefront of the Caliendos’ lives. He was forced to leave every childcare center where his parents placed him. His behavior towards other children, including screaming and hitting, coupled with his inability to nap and refusal to follow directions, made it difficult for him to be in any childcare setting.
Earlier this year, the Caliendos received a formal diagnosis for Anthony from the UNLV Medicine Ackerman Center for Autism and Neurodevelopmental Solutions. The foster child they took in at 7-months-old, who they came to love so much that they adopted him, has a fetal alcohol spectrum disorder (FASD) — a condition caused by the effects of maternal alcohol consumption during pregnancy. Alcohol exposure can damage some parts of the brain, while leaving other parts unaffected.
The couple shared their story with DAVID magazine, hoping to raise public awareness about FASD, which Ackerman officials say affects more than 10,000 children in Clark County, making it more prevalent than autism. Alison Caliendo, who holds a doctorate in public affairs from UNLV, is the founder of Foster Kinship, which provides resources and support to individuals raising the children of relatives, while her husband Terry works from home as an IT consultant. The Caliendos, including Anthony, appeared recently at an Ackerman Center public symposium on FASD.
“FASD is a completely preventable disability,” says Alison. “It is so unfair to the child, and there is no cure.”
While pregnant with Giovanni, she was in an online social group with other women due at about the same time. She was upset to learn from other women that they were told by their doctors that an occasional drink was OK during pregnancy. “This was appalling to me…I have been told ‘Zip it and let us sip it,’ as women put their own need for a glass of wine over the science surrounding FASD. It is sickening and OB-GYNs must stop telling women it is OK to drink a little here and there. It is not OK.”
Dr. Colleen Morris, a clinical geneticist at the Ackerman Center, says studies show no amount of alcohol use is known to be safe for a developing fetus. The federal Centers for Disease Control and Prevention notes that developing babies lack the ability to process or metabolize alcohol through the liver or other organs, so the embryo or fetus has the same blood alcohol concentration as the mother.
Given that 50 percent of pregnancies are unplanned ,and women often don’t know they’re pregnant until they are six weeks along or more, it’s easy to understand how a woman could innocently drink alcohol while expecting. However, research shows one in five women continue to drink alcohol while pregnant.
Whether the drink is beer, wine, or a shot of liquor, makes no difference.
The Institute of Medicine reported: “Of all the substances of abuse, alcohol produces by far the most serious neurobehavioral effects in the fetus.” Studies have concluded it isn’t possible to determine what the exact effects of a certain amount of alcohol will be on a fetus – each experience of a woman and her fetus will be different.
The National Organization on Fetal Alcohol Syndrome (NOFAS) reports FASD affects around 40,000 infants each year, more than spina bifida, Sudden Infant Death Syndrome (SIDS), cystic fibrosis, cerebral palsy, and muscular dystrophy combined. Research shows 2-5 percent of U.S. school-age children are affected.
“This disorder makes a good argument for planned pregnancies and birth control,” says Dr. Julie Beasley, Ackerman’s Clinic Director and a child psychologist.
Beasley says the effects of FASD include abnormal facial characteristics; growth deficits; brain damage; heart, lung and kidney defects; hyperactivity and behavior problems; attention and memory problems; poor coordination and motor skill delays; difficulty with judgement and reasoning; and learning disabilities.
Both Beasley and Morris say only the most severe form of FASD, where a facial characteristic is involved, has sparked much public attention. Yet they also point out that fewer than 10 percent of individuals with FASD have the associated distinctive facial features, including small eyes, an exceptionally thin upper lip, a short upturned nose, and a smooth skin surface between the nose and upper lip.
“That’s the tip of the iceberg,” says Morris. “We’re talking about people who look totally normal, but many experience lifelong behavioral, intellectual, neurological, and mental health challenges.” She says most children with FASD are unidentified or are misdiagnosed, largely because they present no characteristic physical features of the disorder. She adds it’s possible for a child or teen with FASD to have normal intelligence but the social maturity of someone half their age.
Unfortunately, many young people with FASD run into trouble with the law. Studies show 35 percent of individuals with FASD have been in jail or prison. Because their social judgement is impaired, Morris stresses they are vulnerable to coercion by others.
“They’re very impulsive, don’t think things through, and subsequently are very easy to manipulate,” says Beasley.
Clark County Juvenile Court Judge William Voy, in attendance at the Ackerman symposium, said early diagnosis and management of the disorder is paramount. While there is no cure for FASD, researchers have found early intervention services can help reduce some of its effects and may prevent some secondary disabilities. Voy said children with FASD have ended up in the juvenile system as early as age 10.
At the Ackerman event, State Sen. James Ohrenschall was recognized for passing a bill allowing clinics to pay for non-federal expenditures to screen and treat individuals with FASD up to age 21 through Medicaid and the Children’s Insurance Program, allowing more children to be helped.
The Caliendos, aware before adopting Anthony that his birth mother used drugs and alcohol during pregnancy, have done all they can to get help for Anthony early. He was evaluated by the Ackerman Center’s Morris at 18 months. She suspected FASD but because of his age, there could be no definitive diagnosis. Right after his recent sixth birthday, however, the diagnosis was made.
“We have received every type of support available,” says Alison Caliendo. That includes assistance from Nevada Early Intervention Services, a psychologist, and a psychiatrist (who supervises Anthony’s medication). “Luckily, we fought for Medicaid during the adoption process, or we’d be completely broke from the expenses,” Terry Caliendo adds.
At his elementary school, where he is in the first grade, Anthony follows an individualized education program (IEP) that maps out what teachers and service providers will do to help him learn as effectively as possible.
“The biggest issues we have are he is socially/emotionally about half his chronological age,” Alison says. “He is impulsive and struggles to follow directions.”
In order to help their son, the Caliendos have taken training showing the importance of: consistent routines, limited stimulation, concrete language and examples, multi-sensory learning (visual, auditory, and tactile) stable households, environments free of violence, and empathetic parental and family supervision. Terry Caliendo says that training, coupled with therapy and his son’s maturation, cut down on the screaming/biting/throwing outbursts of rage by his son that, in the past, have left dad with black eyes, bruises, and scratches. Anthony’s banging of his own head against a hard surface has also largely stopped.
Caliendo regularly takes Anthony to the library and reads with him every night. “He’s reading far ahead of his grade level,” he says. “He’s very smart.” Unfortunately, even with his son on medication for attention deficit hyperactivity disorder, Caliendo says it’s difficult for his son to stay in his seat at school.
In a blog, Caliendo, who says he’s received enough training to get a street version of a master’s degree in behavioral modification, has written of his parenting challenges.
“I had him in indoor soccer for a while, but he wouldn’t follow the group. All the other kids would be running up and down the field, doing whatever the coach told them to do, and my son would be off on the side, throwing the cones (or whatever training props were available) at the kids on the field, or spinning in circles and banging his head against the side wall.”
What do the Caliendos see as Anthony’s future?
“We are hopeful that we can transition him into adulthood,” his mother says. “But we are aware that he may be with us until his 30s and his emotional age catches up a bit with his chronological age. We are prepared to support him as long as we...need to.”
When Anthony met a visitor recently, he was unfailingly polite, saying “excuse me” when he walked by and agreeing to show how he uses his computer and trapeze/swing in his bedroom. “I like doing this,” he said, grinning.
With structure so important to Anthony’s life – changes create a high level of anxiety and subsequent acting out – the Caliendos aren’t taking family trips or throwing parties. That doesn’t bother them.
“We’re in love with the kid,” Terry Caliendo says. “He’s a tough kid, but we love him. But there’s no reason other kids have to have his challenges. It’s simple: Don’t drink when you’re pregnant.”