INTRODUCTION:

Jenny is a 22-year-old single mother of two daughters, aged 3 and 1. At 21, Jenny was diagnosed with Alcohol Related Neurodevelopmental Disorder, ARND, which is a specific subset of Fetal Alcohol Syndrome. Her primary disability is damage to the Central Nervous System and the brain as a result of prenatal exposure to the teratogenic effects of alcohol. Her disability is permanent. Due to her late diagnosis and a lack of services and support through her formative years, Jenny has developed several secondary disabilities associated with this disorder, including mental health problems, disrupted education, trouble with the law, confinement, inappropriate sexual behaviour, and alcohol/ drug problems. Jenny was adopted at birth. Her health was not good as an infant with ongoing intestinal problems, chronic ear/throat infections, and poor circulation indicative of a heart/valve problem that was never properly assessed. Jenny's youth marked a period of extreme instability highlighted by episodes of living on the streets, juvenile detention, private residential school, foster care and various supported home placements. None of these interventions succeeded, largely because her behaviour was misinterpreted as non-compliance rather than non-competence rooted in organic brain damage. Her prognosis is consistent with studies related to this disability that indicate individuals with FAS, including ARND, are unable to live independently and be employable. She requires a great deal of intervention in order to keep her safe and to ensure some level of stability in her life.

With considerable structure put in place, Jenny was able to function with limited stability. A succession of programs has helped to ensure her protection. However, there is no consistent ongoing service specifically addressing the needs of those with FAS. When Jenny 'graduates' from a program her needed supports are removed and disaster follows. It has been proven time and again that she needs a high level of intervention, on a one-to-one basis, with ongoing pro-active supervision in order for her life to have any degree of stability and security. Further, it has required a 'team' approach with individuals involved in several critical areas of her life in order to be successful. She is a very challenging client whose needs are more than one person can provide without burnout.

TIME AND MONEY MANAGEMENT:

Jenny tries hard and wants to live a normal life. However her organic brain damage does not enable her to do so without specific, ongoing support. Both her time and money management are significantly compromised. Her total inability to handle money creates major difficulties for her. She is incapable of budgeting. The coordinator of the Youth Independence program worked with her intensively on this issue over a period of several months and observed that she showed no development in her ability to manage her funds. She has never paid a bill. As a result basic life needs such as heat, light and telephone, are constantly at risk of being cut off. Welfare and her parents have had to bail her on many occasions. Bill collectors haunt her on a regular basis. The value of money is an abstract idea, the understanding of which is handicapped by her brain disorder. Further, the failure of her brain to be able to link cause and effect, or logic to emotional response leads to total impulsivity. She will spend the bulk of her welfare check on an impulsive purchase without thought for her food needs. She has pawned or sold new quality gifts for a fraction of their true value with no understanding that she has been taken advantage of or that it was a poor deal. She received $11,000 for a student loan, which disappeared in less than 2 1/2 months with nothing to show for it. The only time that her housing needs have been secure was when she finally agreed to allow her father to administer all her funds, paying the bills and giving her a small allotted amount on a bi-weekly basis. It is absolutely critical that DB funds be managed so that all bills are paid and she is given small, regular cash allotments to cover her weekly needs.

Jenny does not understand the abstract quantitative nature of time. This, combined with her poor short-term memory makes planning and attending to schedules a challenge. She misses many appointments, either forgetting completely or getting the days mixed up. She uses a notebook but then loses it or forgets to look in it. Notes on a calendar often get transcribed to the wrong date. Her 'tomorrow' sometimes doesn't compute to 'today' with the day's advance. Two hours can translate into 15 minutes in her perception. A friendship of one week becomes 'ages' or 'forever'. Jenny's confusion with time and dates often is misinterpreted as non-compliance. She consistently makes commitments on which she fails to follow through. Typically she has no memory recall of having done so. To achieve success with appointments Jenny must be 'cued' and reminded repeatedly. When she does attend to her schedule, she is very concrete in her understanding of time. If you set an appointment for 2:00, she will rigidly adhere to that time and fly into a rage if this exact time is not met. She will walk out of doctor's offices etc if they are 5 minutes late. Conversely she arrives at offices without an appointment and expects immediate service. In parenting, she rigidly adheres to bedtime schedules to the detriment of other routines such as bath or story time.

ACCOMMODATION:

Housing has been another major problem for Jenny to cope with. Since the birth of her first child when stable housing was a critical need, her parents or other support workers have been involved in finding and maintaining such. Despite this, Jenny's housing has been unstable and inadequate bordering on unsafe and unhealthy. When she falls between the cracks and is without services, her life is totally lacking in stability, placing both herself and her children at risk. Since she became pregnant she has lived in 11 residences, most of which have been substandard. She has left at least two on threat of eviction. During a short period when her worker was on strike she moved and entered into a lease agreement, which she was incapable of understanding. Her departure a month later led to an arbitration hearing in which she was held responsible for a substantial portion of the unfulfilled contract. On both this move and two subsequent moves she left with no notice and was thus responsible for rent on two premises for the same month. She simply cannot cope with nor understand her responsibilities as a tenant. Her impulsivity and lack of ability to critically evaluate potential residences precludes sound choices. What Jenny really needs and what her children would benefit from is a supported residential facility that would provide a safe, maintained home with structure and support available on site. Otherwise, low-income housing is essential.

FOOD PLANNING AND PREPARATION:

Jenny makes an effort to succeed as a homemaker. However, there is continued concern about her abilities to provide a healthy environment for herself and her children. While she was a youth, her worker took her shopping and assisted with her choices. There has not been a service available since she reached adult status to support this need. This worker at the time was very concerned about food preparation and what or how Jenny would manage to feed her child once the infant was off formula. Weekly sessions designed to develop cooking skills in a group setting highlighted Jenny's challenge in this area. Jenny often complains of stomach ailments and vomiting and on almost a weekly basis indicates that she has food poisoning as a result of her own food preparation. It is questionable how often dishes are washed. Her child's leftover lunches routinely accumulate in her daycare cubby until rotten. Baby bottles go missing until the odour of sour milk leads to their discovery. The child's sip cup does not get properly cleaned and curdled milk coagulates in the spout. Usually, she does not provide breakfast for the children. Noodles are the mainstay of their diet. The lack of food in her home has been noted by investigating social workers on more than one occasion. Jenny's own nutritional habits are terrible. Her skin, hair, general energy levels, low weight, and compromised immune system all point to a poor diet. She is often sick and catches everything that is going around. She relies heavily on high fat, simple carbohydrate diet from fast or instant food sources. She cannot follow a recipe, both from the standpoint of the challenge this poses to her brain's ability to sequence, and also because of her difficulty with the quantities and measurements, mathematical concepts that are typical barriers for people with FAS/E

HOUSEWORK:

Housework gets done sporadically and incompletely. Jenny has never been able to be responsible for the removal of garbage. She will pile bags of dirty diapers and food scraps in the porch or balcony, attracting stray cats and other vermin. Her parents find it necessary to do garbage runs, on occasion taking a full truckload to the dump. She has never cleaned a toilet bowl. She does do the children's laundry, but never gets it put away so that piles fill the halls and corners of rooms, mixing up with dirty laundry and thus defeating the purpose. Some personal laundry needs are avoided completely by simply throwing the clothes away. Her organizational skills are challenged by her brain damage. As a result, she hoards the children's clothing with no ability to sort to seasons, sizes, or outgrowing. Recently, Jenny made a precipitous move away from her home community and her supports. When her parents investigated her abandoned trailer, she had left behind all of the children's clothing, toys and furniture. One entire truck load of plastic bags and boxes stuffed with children's clothes were taken away. It took 2 adults 3 days to sort through, clean, keep and dispose of the items. She loses items of clothing and forgets they even existed. Her abstract concept of ownership and memory deficits leads her to take or 'borrow' others' possessions and never return them. Jenny's mother has requested a Family Support Worker for Jenny for 3 years. She has specifically request that Jenny receive help to organize her home, shop, and cook.

PERSONAL SAFETY:

Jenny's lack of judgement and impulse control caused by her brain damage makes her an easy victim. She is easily misled and used by negative segments of society who prey on young women and even by her so-called friends. Typically her residence is a hangout. She has had numerous roommates and partners, none of whom have ever paid their share of the rent and food. She does not understand the fact that she is being used. Nor does she comprehend what an equal share is or even why they should be paying anything. On occasion her parents have had to evict roomies when the arrangement became unbearable or abusive. Jenny is incapable of establishing personal boundaries for herself that protect her from promiscuous relationships and emotional, verbal and physical abuse. She has had many live-in partners since the birth of her first child in 1998. Both fathers of her two children have physically abused her. In one case she was taken to hospital by ambulance and received stitches to her head. The police have been called to intervene in violent disputes on as many as 30 occasions.

PERSONAL CARE:

Jenny is incapable of being responsible for administering her own medications due to her memory deficits. She has never been able to follow the daily regimen of birth control pills and has even shared them with friends completely ignorant of the consequences. Eventually her family doctor realized her inability to be consistent with birth control pills so she was put on Depo-Provera shots, the management of which is still too much for her. As a result she has had 4 pregnancies culminating in 2 live births. Three times she told her mother she did not think she could get pregnant. She was unaware of the last pregnancy until she was 25 weeks pregnant. Her mother discovered upon investigation that her last 3-month shot had been one year prior. After the birth of her last child, Jenny agreed to a tubal ligation. It is rare, if not unique, that the local gynaecologist will do such a procedure on a woman of her age. In this case however, with the support of her family doctor who was by then in possession of Jenny's FAS diagnosis, the specialist was convinced that this sort of intervention was needed. Jenny has not had any dental care in approximately 7 years. She has had abscessed wisdom teeth that all need to be extracted. Jenny's fears and gag reflex make it impossible to consider extraction without an anaesthetic.

Jenny has difficulty dressing appropriately for the weather. She will huddle freezing in a skimpy sweater in winter, but continue to wear winter jackets well into spring. This difficulty has also been noted with the care of her children, who often arrive at daycare and grandparents without appropriate winter clothing and footwear. Written cues and reminders by the daycare are not successful in helping Jenny remember. She also has no concept of appropriate attire for the occasion such as going to a job interview.

MENTAL HEALTH PROBLEMS:

Jenny has mental health problems that studies have proven to be typical of FAS/E. She suffers from clinical depression and panic attacks. She has twice attempted suicide. She has been prescribed antidepressants on numerous occasions in the past but again her inability to remember and to persevere has led to unsatisfactory results. She has never maintained a regimen for long enough to see any results. She has recently started another course of Paxil. Her mother believes that Jenny has been self-medicating for years with alcohol and street drugs. Without early diagnosis and intervention, the secondary disability of alcohol and drug addiction substitutes for the antidepressants and stimulants typically prescribed to modify neurotransmitter/receptor damage.

PARENTING:

There is no place where Jenny's deficits are more apparent than in her inconsistent parenting. She sees herself as a good mother and claims to love her children. Yet she moved away at the beginning of July leaving her children behind and seven weeks passed with no contact. Over the next five months she frequently made commitments to her children but did not follow through, largely as a result of memory deficits and inability to plan, project and think logically. She has no concept of the fact that this action is endangering her role as a parent or that it is having a negative affect on her children. With her memory deficits and poor concept of time it appears to be 'out-of-sight, out-of-mind.' The consequences of her impulsive move have struck her as unfair and unwarranted. Since the birth of the first child Ministry Of Children and Families has been involved numerous times starting with the apprehension of the first child at 8 months up to the present time wherein they are on the verge of going to court for a supervision order. Immediately after the birth of the second child, Jenny frequently gave the baby to one grandma who has parented 50% of the time. Jenny has not bonded with this child and appears to be aware that she is incapable of parenting two. She stated that she can't cope with the baby and signed a preliminary agreement in July giving sole custody to the father. However, she now has no memory of doing so and adamantly denies that she did any such thing. Concern is being expressed that both children may themselves be affected by fetal alcohol exposure.

Jenny takes a juvenile interest in her children more characteristic of a 12-year-old babysitter. In daily parenting, she is inconsistent in attending to their needs, often losing focus. TV, reading or sleeping, often takes precedence. She leaves her child unattended in the crib and is unresponsive to her morning cries. Jenny cannot cope with their challenging behaviours and her low frustration threshold leads to verbal abuse and rage. Her perception often runs counter to reality. For example she is unable to be consistent about childproofing her residence and is unaware of all the risks. Jenny is incapable of following through on responsibilities, handicapped by both a lack of comprehension and memory deficits. For example she has never registered the birth of her one-year-old child although it is required by law to do so within 30 days. She has in fact filled out the application several times but she fails to complete it and she fails to remember to mail it. Her parenting skills are challenged. Bedtime in particular is difficult. Beds are often unmade. The baby is put down right on the vinyl mattress with no sheet. The toddler is often allowed to sleep on the sofa without a diaper, with obvious negative consequences. Jenny herself typically sleeps on the sofa rather than in her bedroom.

CONCLUSION:

Jenny faces frustration and failure on a daily basis which often triggers a fight or flight response. As a result, her lack of impulse control causes her to run or to lash out in fits of rage. Jenny's non-competence affects her ability to follow rules and guidelines. She will tell you what she needs to do and then immediately do the opposite and be completely blindsided by the consequences. Jenny's lack of ability to generalize or to predict outcomes leads her to make the same mistake over and over in different settings. She simply fails to learn from past experiences. Her poor choices in partners, repeated pregnancies, many moves to unsatisfactory residences are all examples of compromised abilities brought about by brain damage as a result of fetal alcohol exposure. She engages in high-risk behaviour with no fear. Her ability to make and sustain meaningful relationships is marred by her volatile temperament, mercurial mood swings, and compromised social skills.

It is doubtful that Jenny will ever be able to maintain employment. She has never held a job for more than a few weeks. In every case it is believed that she was fired. Several aspects of her handicap combine to make her employability questionable. First her mental and physical health would challenge her ability to be reliable. Her low frustration tolerance and poor anger management would make positive interactions with co-workers and the public difficult to impossible. Her impulsivity, poor judgement, and memory deficits will continue to lead to ongoing unreliability. Jenny is permanently disabled. To date, no intervention has proven successful with her. She will always need a very high degree of ongoing support, structure and supervision in order to manage her life.