Being the parent of a child with fetal alcohol spectrum disorder
My son’s diagnosis of fetal alcohol spectrum disorder and our family’s consequent chaotic home life were shameful secrets before Gabrielle, the newest member of my work carpool, vented about her kids’ problems in our school. Brittany bit a teacher’s hand; Marshall peed in the school hallway to please his only friend.
Gabrielle and her then husband had adopted biological siblings in infancy. Marshall was 3 and a half and Brittany six months old. Marshall had spoken just 100 words, a mixture of Cree and English. “By any chance,” I asked, “do your kids have FASD?” “In spades,” she answered. I confessed that so did Quinn, the younger of our two adopted boys. Zoltan, a third carpooler, confided that his daughter, Stacey, adopted at age 6, had an alcoholic birth mother and serious mental health issues. Like Marshall, Stacey had barely spoken until she was 4 and was placed in a good foster home after neglect both by her parents and by earlier foster parents. Overnight I had a support group for my challenges in dealing with Quinn’s dangerous tantrums, paranoia and growing agoraphobia.
I needed it. It’s hard to describe the horrors of living with a child who has FASD. Almost anything could set Quinn off on an endless tantrum. He threw things, kicked holes in walls, punched his parents and brother, made threats and demonstrated no ability to self-soothe. The three of us would hold him down, listening to his screams and incoherent talk, sometimes for an hour. Dealing with teachers, the police, psychologists and social workers exhausted me because their ignorance of FASD was painfully obvious and their implication that I was a useless parent hurt immensely. Much as I loved Quinn, I thought often what a relief it would be to take him to Social Services and simply say we were incapable of raising this child. But there were many news items about children dying or being mistreated in foster care. Foster parents often said that these children were uncontrollable.
I had always regarded our society as callous for placing unstable kids in homes with foster parents who had no proper training or professional support. But then, what training and support did parents have? The death rate for these kids relative to their normal peers is high, and most are as unable to care for themselves in adulthood as in childhood. Their parents are far more subject to heart attacks and severe anxieties than the general population. Most marriages involving kids with FASD break down, including mine.
My mental and physical health stayed far better than most FASD parents. I am an exercise fiend and had a successful career with flexible hours. I proved able to compartmentalize my life in ways that most people cannot. Nonetheless, I often felt at wit’s end and I sent excruciating emails to my MLAs and MPs pleading for government help, without which I feared our family would die in the effort to keep Quinn in our home. I received form replies.
My ex and I were unaware of FASD when we adopted five-week-old Quinn in 1989. In 1993 CBC TV aired a special on FASD, contending that some children whose mothers drank during pregnancy were born with damage to their frontal lobes. This is the part of the brain that controls judgment and motor functions. Such damage can result in slow development, lack of empathy, a mental age significantly lower than chronological age, and a tendency to uncontrollable rage. Throughout their lives they need an “external brain” to guide them. Their minds process concrete information but not abstraction, and they easily misinterpret situations and words.
Why a “spectrum disorder” rather than a disease? “Disorder” is commonly used in mental health diagnoses, and a disorder such as autism or FASD gets the label “spectrum” when it manifests differently in different individuals. The degree and character of brain incapacity vary among FASDers. CT scans can confirm if the parts of the brain that control decision making are damaged. More commonly, testing for FASD is neuropsychological: a series of tests of ability, attitudes and behaviour. Test results and an admission from the mother that she drank during pregnancy are required for the FASD label to be applied.
The impact of drunkenness on a fetus was unrecognized before medical literature in the 1970s described children with Fetal Alcohol Syndrome. They had abnormally small heads and eye openings, and thin upper lips. They developed slowly and behaved erratically. Soon it became apparent that many kids with alcoholic moms looked normal but had the same problems as FAS kids. The moniker FASD was coined in the 1990s to include all people born with alcohol-related neurological disorders.
The Public Health Agency of Canada reports: “FASD is the leading known cause of preventable developmental disability among Canadians. It is estimated that FASD affects approximately 1 per cent of the Canadian population.” This is a conservative estimate. White middle- or upper-class women of neurologically impaired children are rarely asked if they drank during pregnancy. The diagnosis is mostly applied to abnormal children of Aboriginal or African descent. For children given up for adoption, information about alcohol intake during pregnancy is often gathered by adoption agency workers.
Quinn, despite having an alcoholic birth mother, initially seemed normal and empathetic. A few warning signs developed when he was 6. He surreptitiously destroyed our deck table and could not explain why. He complained he was the worst reader in his Grade 1 class, but he read fluently and compared himself only to the top reader.
When he was 7 and a half, Quinn attempted to choke himself with the curtain drawstrings, saying, “I’m fat, ugly and stupid and I don’t deserve to live.” He was thin, gorgeous and bright. To this day his self-descriptions oscillate from self-flagellation to grandiosity with little in between. Quinn’s school attendance became sporadic. We took him to a psychiatrist, who suspected FASD. That was confirmed in a neuropsychological exam, required by the Department of Education before it would provide help for kids who otherwise had a normal IQ and performed at grade level. Medicare offered free assessments, but there was a two-year wait. We paid for a private assessment. The neuropsychologist claimed Quinn was the most rigid child she had ever encountered. He needed closely structured and monitored days to counter his crippling anxiety.
We put Quinn in a new school in Grade 5, where the principal used special-needs money for FASD training for Quinn’s teachers to help them plan strategies for his educational success. For two years Quinn performed well academically and made many friends. The Grade 6 teacher aced Quinn’s seemingly incompatible demands for special help with no visible evidence of assistance. She emailed Quinn each day after school, breaking down his assignments into concrete tasks.
Our efforts to replicate these arrangements for junior high failed. The teachers wanted to teach children to “take responsibility for their learning,” a disastrous approach for kids whose brain wiring limits their self-control and self-confidence. One day Quinn, bright but physically slow, spent an hour and a half doing two pages of math homework. The teacher assigned the even-numbered questions. Quinn completed every question on the first page and then, remembering the instructions, shredded the page and redid the work. I explained why this was unnecessary. But FASD thinking is concrete: “Teacher said to answer only the even-numbered questions.” An FASDer’s memory is porous, and so Quinn repeated his error when he did the second page. Again he crumpled his work but this time was too pooped to redo it.
Next day, the math teacher asked Quinn to put a specific answer on the blackboard. Quinn said he hadn’t done the page. The teacher, though I had warned him that Quinn could not accept public criticism, reprimanded him. When I met with the teacher, he was belligerent: “I ask kids to do 15 minutes of homework a night. Is that too much?” “No,” I responded. “Please spend 15 minutes a night reading Quinn’s neuropsych report.” When I explained how Quinn had approached the homework, the teacher was speechless.
I arranged a meeting of the neuropsychologist with Quinn’s teachers, at which all of them seemed to have eureka moments. When I asked what she had told them that I had neglected, the neuropsychologist responded: “Nothing. They see me as an expert and they think parents know nothing.” It was too late. Quinn skipped school for two months.
By Grade 9 the school had a new principal who knew nothing about FASD and everything about kids taking responsibility. She threatened Quinn with a transfer to a special-needs school if his attendance was irregular. Quinn found constant attendance stressful because several boys were teasing the kids with disabilities. The special needs assistant informed the principal but nothing was done.
One day Quinn sucker-punched his main tormentor in the stomach. He was charged with assault, transferred to another school (which he refused to attend), and he, we parents and the school board were sued by the other boy’s family. One family drama followed another and gradually Quinn became visibly psychotic, believing his computer was speaking to him and strangers everywhere were assassins hired to kill him.
I appealed to the courts in 2008 for a forced psychiatric assessment. The hospital resident agreed Quinn was psychotic and took an hour’s evidence from me. But the psychiatrist who interviewed my son the next day discharged him because, in her view, his problem was that self-medication with marijuana had caused him to become psychotic. Addiction and mental health issues are comorbid 80 per cent of the time, and hospitals (most with few psychiatric beds) frequently limit admissions by excluding alleged addicts. The “deserving mentally ill” are separated from the allegedly undeserving. The psychiatrist ignored my evidence because Quinn, now 18, had not provided permission for her to read it, not that she asked him. “But he has FASD and his social age is about 12,” I protested. She replied that the law dealt only with chronological age. She had only called to ask me to give Quinn a ride home. I said, “I won’t be part of an irresponsible discharge of a young man who is a danger to himself and others.” She gave him bus fare.
A month later, Quinn, still psychotic, attempted suicide first by smashing a stolen car into a gasoline pump, and then running into the street to be hit by a car. The police rescued him in time and took him to the same hospital. Again the psychiatrists tried to discharge him after a few days, though his mother and I saw ample evidence that he was still psychotic. We threatened a lawsuit and the hospital relented. They kept him for a month to let his meds kick in.
Quinn lived the next two years with his mother in another province, but when his behaviour became increasingly bizarre (he started disassembling her new dishwasher, threatening her with his wrench when asked to stop), he had to move into his own apartment. Though we arranged public supportive services for him, he proved unable to live on his own or to last in a job. He needed job coaching but that was never on offer. He did volunteer two days a week with the SPCA for a time.
Quinn now lives in a “home share” arrangement. That involves a family contracting with a government-supported agency to provide shelter in their home for a person with disabilities. Quinn’s home share family provides his meals, ensures he takes his meds and gets him to appointments. They are trying to involve him more in the community. Scant provincial funding and few trained individuals to run shared homes limit the number of FASDers who can be accommodated this way.Families and caregivers I’ve spoken with and others who have shared their stories in online support groups raise common themes. Raising FASD kids is exhausting and damaging to the health of parents. Publicly supported respite—that is, a break from an FASDer—is rare. Though some parents locate helpful community resources, public and private, none I’ve talked to have a case manager to link the psychiatrists, psychologists, family doctors, teachers, employers and others involved in their children’s lives. Parents provide whatever coordination occurs. Because children’s and adults’ services for FASD are separate, age 18 means a new scramble to find services.
How have the kids from my carpool support group made out? Gabrielle, recognizing that hers could not make good decisions, made decisions for them: “I controlled the environment.” Before they began school, they responded well to the strict structures Gabrielle imposed. She ensured that both kids participated in artistic activities, where both excelled, and sports. She encouraged the schools to copy her methods, but teachers knew zip about FASD. She sent Marshall to a private high school emphasizing discipline, at her own cost. Brittany does alright. She completed high school and a college music program and always has jobs and boyfriends. She accepts her mom as her external brain and calls her daily to help her get over panic attacks. Marshall is less successful. Though a compulsive thief from a young age, he finished high school and enrolled in a university college. But freed from his mother’s watch over his every move, he drank and used drugs, and stole a car under the influence. Drugs and alcohol have fuelled a decade of frequent imprisonment. He is currently homeless. The different fate of these two blood-related FASD individuals speaks to the spectrum of outcomes for FASDers.
Stacey’s life has also been tumultuous. She adjusted well to her adoptive home but developed serious problems at age 13 after learning of the early deaths of both of her birth parents during an effort to reconnect with her original family. She cut herself for two years and overdosed frequently on Aspirin, which only stopped three years ago at age 34. Zoltan approached Social Services when the self-destructive behaviours began. The social worker fixated on Zoltan, by then a single dad, leaving for work early and returning at 6 or 7 p.m. two days a week. Instead of offering to place a visitor in the home at those times, the social worker attempted to have Stacey removed from her stable, loving home. The judge ruled in Zoltan’s favour. Stacey studied hard at school, completing Grade 12 when she was 20, and attempted first a nursing program, then an LPN program. Both were too stressful and though she almost completed the LPN, her dad rushed her to Alberta Hospital when she threatened to overdose. It turned out she was pregnant. She remained in hospital for several months and gave birth to a boy, who has developed normally. He lives with relatives of his father but visits Zoltan and Stacey every Sunday.
As an adult, Stacey has lived unsuccessfully in five or six group homes without nursing staff to supervise meds and watch over residents. She now lives in a non-profit home for people with disabilities that employs LPNs. FASD adults who cannot support themselves are eligible for Assured Income for the Severely Handicapped (AISH). Stacey receives AISH, which helps with her rent and board, and she supplements that money with work two days a week in a non-profit retail outlet. She helps other residents by shopping for them at a nearby convenience store. For the past two years, she has not overdosed. But her diagnoses include agoraphobia, borderline personality disorder, schizophrenia and depression, all common for FASDers.
Carson, alone among the FASDers whose parents I’ve talked to, has an IQ below 70, which made him eligible for special publicly funded help with schooling and social needs. Apprehended from his alcohol-addicted mom at birth, Carson was in the foster system before being adopted at age 2 over 40 years ago. He had a severe attachment disorder and demanded full attention from his adoptive parents, who divorced. His dad remarried when he was 12; he was as demanding of his stepmom as he had been with both parents. After he finished school, Carson was assigned a job coach from an agency called Selections and a life skills coach from Skills. A psychiatrist and an occupational therapist also help out. He is assigned to a Persons with Developmental Disabilities social worker who manages 3,000 files and cannot be viewed as a case manager. It is Carson’s dad, now 80, and his stepmom who deal with Carson’s issues and arrange whatever collaboration occurs among his aid workers.
Extremely sensitive, lacking self-esteem, and on medications for thought disorder, Carson nevertheless is usually employed. Today he works three part-time jobs: bell-person at a hotel, table-setter at a chain restaurant and cleaner at a fast-food joint. “His financial management,” says his stepmother, “is appalling.” When he had a credit card he ran up debts that they had to pay. At one point his parents bought a house where he lived with two other people with disabilities, neither with FASD. Now he lives in a regular three-bedroom apartment and rents out one room. Though Carson has a devoted stepsister, his parents worry about how he will get by after they die.
Belinda is a First Nation adoptive mom of two boys, now 6 and 5, adopted together in Toronto five years ago. The adoption agency mentioned that the mother had been drinking during both pregnancies and noted the risk that the children would have learning disabilities. In fact both have full-blown FASD. The younger one is “very aggressive,” while his older brother “bangs his head or stares blankly for a really long time.” They were unmanageable and Belinda approached many agencies before getting invaluable help from an FASD coach from the publicly funded Catholic Social Services. She contacted the same agency when she came to Edmonton, her FASD coach acting as a supportive link with special schools and other services. Though she is a well-educated professional, Belinda found that “people don’t listen to me, because I’m a parent.” As she was working full time, almost every minute of her non-work time was spent with her exhausting children. She was finally able to arrange for 20 hours of respite per boy per month.
When you say your child has a disability, people look for something that’s visible,” says Belinda. Renae Sanford, who has over 45 years of experience working with FASDers, can spot them a half-mile away. She stresses that while people with FASD can generally be managed, the disorder never goes away. FASDers need a life plan and they need case managers who are experts in FASD. Having worked in several provinces, Sanford believes that Alberta has developed more programs and staff who understand FASD than other provinces. The problem with social workers and psychologists who lack specific training is that they use therapies that assume a capacity for abstract thinking and that emphasize personal responsibility. “FASDers know that they are not in charge, that they are not making good decisions. They want and need someone who will make decisions for them.”
Yet most psychiatrists and social workers resist directive therapies. They want to “fix” individuals who are screwing up. Faced with apparently intelligent, ambitious-sounding FASDers, they blame “controlling” parents for problems—though parents and FASD specialists alike know that these individuals cannot “walk the talk.” Sanford advocates testing that deals with “functioning IQ,” not academic intelligence, so that no FASDer is denied necessary help from Social Services. People with FASD, Sanford has learned, “need to have programs that follow them through their whole life.” Their 18th birthday is meaningless.
Sanford believes all teachers and social workers need special training regarding FASD. She calls as well for sensitivity training for judges. When Mary Ellen Turpel-Lafond, now BC Representative for Children and Youth, was a provincial court judge in Saskatchewan, she asked for pre-sentencing diagnoses for FASD. The 2015 Truth and Reconciliation Commission recommends that governments in Canada provide “increased community resources and powers for courts to ensure that FASD is properly diagnosed, and that appropriate community supports are in place for those with FASD.” They suggest “community, correctional and parole resources to maximize the ability of people with FASD to live in the community” and frequent evaluation of the effectiveness of programs once implemented.
Parents and caregivers of FASDers know this requires an end to piecemeal, time-limited services. FASD must be viewed as a life sentence that requires an individualized life plan, worked out and frequently revisited with family and all service providers, coordinated by a case manager with a small caseload. Otherwise parents and caregivers face constant burnout and FASDers will have nothing like safe, happy lives. #
Ted Sparks is the assumed name for a scholar, author and activist in Edmonton. Thoughts on this story? email@example.com.