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Information for Parents and Carers

Drug and alcohol referral

Sometimes drug and alcohol issues for people with FASD can not only take on a life of their own but can also create many other issues.  Some of these issues can cause the individual to come to the notice of the criminal justice system or if a female, can create situations where unplanned pregnancies occur.  Options for women with FASD who also have drug and alcohol addiction is to have a contraceptive implant inserted.  This will protect future children from being born prenatally exposed to alcohol.  There are many parents looking after their grandchildren through unplanned pregnancies for people with FASD.  The following is a list of some ofthe drug and alcohol services around Australia and overseas.

Overseas

Drug Rehab advice and information

Alcohol rehab advice and information

Australia

Rehab services for pregnant women SE Queensland

Chaplain Watch Independent not-for-profit organisation with volunteers who donate their time to patrol the CBD, Fortitude Valley and Caxton Street precincts, watching out for anyone in crisis, at risk or in need

OzCare

Cairns Clinic

Rockhampton Drug and Alcohol Awareness Centre

Brisbane Youth Services

St Vincents Hospital Sydney

Bega Garnbirringu Health

ACON NSW

Northside West Clinic Sydney

Alcohol Treatment University of Sydney

Leichart Womens Community Health Centre

Australian Council on Alcohol and Drug Dependence

Beat alcohol - St John of Good Health

Health Victoria

Addiction Treatment - Arrow Health Melbourne

Odessy House Melbourne

City Mission Launceston

Bridge Program Salvation Army Tasmania

The Hobart Clinic

ADIN Tasmania

Drug Education Network

South Australia Health

Visible Recovery Adelaide

Aboriginal Alcohol and Drug Service Perth

Womens Health and Family Services Jondaloop and Northbridge WA

Cyrenian House Perth

Hollywood Clinic Western Australia

AA Perth

NT Department of Health Darwin

EASA - Darwin

List of drug and alcohol options Northern Territory

 

Strategies for Daily Living - developed by NOFAS 

 

Get to Know Me: My Life with FASD

Get to Know Me: My Life with FASD, the NOFAS interview series, is an up-close and personal look at the personalities and perspectives of people living with FASD. The revealing portraits bring to life each individual featuring their personal achievements and interests, and are intended to inspire persons with FASD and help others better understand the condition.

 FASD through the Lifespan FASD has lifelong implications. There are a broad range of characteristics to watch for at different ages.

  • Infants: low birth weight; irritability; sensitivity to light, noises and touch; poor sucking; slow development; poor sleep-wake cycles; increased ear infections.
  • Toddlers: poor memory capability, hyperactivity, lack of fear, no sense of boundaries and a need for excessive physical contact.
  • Grade-school years: short attention span, poor coordination and difficulty with both fine and gross motor skills.
  • Older children: trouble keeping up with school, low self-esteem from recognizing they are different from their peers.
  • Teenagers: poor impulse control, cannot distinguish between public and private behaviors, must be reminded of concepts on a daily basis.
  • Adults: need to deal with many daily obstacles, such as affordable and appropriate housing, transportation, employment and money handling.

Strategies for Living Establish a relationship with a pediatrician and consult him or her with any problems or questions. Here are some other helpful tips—

For Infants:

  • Poor sleep-wake cycles/irritability: Play soft music and sing to your baby. Rocking, frequent holding, low lights, automatic swings and wrapping them snugly in a soft blanket also can be helpful.
  • Poor weight gain: Consult a nutritionist to develop a food plan or discuss supplement use.
  • Chronic ear infections: Speak to a specialist about evaluating your child’s hearing and effectively treating infections.
  • Delays in rolling over, crawling, walking: See an occupational therapist for assistance. Also help your baby in crawling, grabbing and pulling.
  • Speech delays: Consult a speech therapist and purchase tapes or toys that are specifically designed for children with delays. Speak and read aloud expressively to your baby.

Toddlers:

  • Continued motor skill delays: Work with an occupational or physical therapist. Use toys that focus on manipulating joints and muscles.
  • Distracted easily: Establish a routine and use structure. Simplify rooms in the home and reduce noises or other stimulation.
  • Dental problems: Consult a pediatric dentist. Your child may not be able to sit still, so be sure to prepare your child for the exam and allow more time for the appointment.
  • Small appetites or sensitivity to food texture: Serve small portions that are lukewarm or cool and have some texture. Allow plenty of time during meals and decrease distractions such as television, radio or multiple conversations.

School age:

  • Bedtime: If your child cannot sleep at night, shorten naps or cut them out completely.
  • Making and keeping friends: Pair your child with another who is one or two years younger. Provide activities that are short and fun.
  • Boundary issues: Create a stable, structured home with clear routines and plenty of repetition.
  • Attention problems: Medication may be helpful. Keep the child’s environment as simple as possible, and structure time with brief activities.
  • Easily frustrated/tantrums: Remove your child from the situation and use calming techniques such as sitting in a rocker, giving a warm bath or playing quiet music.
  • Difficulty understanding cause and effect: Repetition, consistency and clear consequences for behavior are important.

Adolescence:

  • Anxiety and depression: Medication may be helpful, as well as counseling or encouraging your child to participate in sports, clubs or other structured activities.
  • Victimization: Monitor the activities of your child and discuss dealing with strangers.
  • Lying, stealing or antisocial behavior: Family counseling is helpful, as well as setting simple and consistent rules with immediate consequences.

Adulthood:

  • Housing: Finding appropriate housing for adults affected by FAS/FASD is extremely challenging. Contact your state’s department of disabilities to pursue residential funding and get on every waiting list you can find that offers housing options.
  • Poor peer or social relations: Enroll your child in classes or social clubs for adults with disabilities.
  • Mental health issues: Provide structure, routine and plenty of activities. Investigate medication options and counseling.
  • Handling money: Many FAS adults need the family to handle all financial matters.
  • Difficulty obtaining or keeping jobs: Investigate trade schools, job training programs or job coaches. Be sure to select jobs that offer structured, routine activities that won’t cause overload or stress.

More Tips

Routine:

  • Keep the family’s routine as much the same each day as you can.
  • If the family’s routine or schedule changes, remind your child about changes.

Behavior:

  • Learn how to tell when your child is getting frustrated, and help out early.
  • Make sure your child understands the rules at home.
  • Tell your child about what will happen if he or she has good behavior or bad behavior at home.
  • Let your child know when he or she has good behavior.
  • Teach self-talk to help your child develop self-control. Use specific, short phrases such as “stop and think.”
  • Repeat everything you say and give your child many chances to do what you ask.
  • Be patient.
  • Give directions one step at a time. Wait for your child to do the first step in the directions before telling your child the second step.
  • Tell your child before you touch him or her.
  • Be sure your child understands your rules, and be firm and consistent with them.

Birth Mothers

This brochure below was developed to assist birth parents understand and cope with the very difficult emotions they may experience. In an ideal world, the steps would be used in a support group with other birth mothers.  Whether we are alcoholic or just social drinkers, we will all be experiencing the same grief, guilt and loss. 

pdfrffada_fasd_12_step_brochure.pdf702.2 KB

Bring a Birth Mother

Anne Russell 2005

 

As the birth mother of two adult children with FASD I’ve experienced many powerful feelings. Grief for the loss of a normal life for my boys; fear for their future and whether I can manage my own life well enough to help them through theirs; the horrible feeling you get when you know you’ve really injured someone; a dreadful heartache that I hurt my babies, innocents who depended on me − their mother − to keep them safe; and selfishly, regret that my life does not look like the life I had planned. I wanted purpose. A reason to get up in the morning – to make my mark on the world. To do what Ralph Waldo Emerson wrote:

When I look back now I see lives made more difficult, not easier. Any positive achievements seem insubstantial and unconvincing. Yet now because of FASD I have the chance to leave a redeemed social condition. Had I foreseen the pain and distress this would cause to the people I love, I might have chosen to live on an island, isolated from everyone.

Of the many things I haven’t changed that I desperately wanted was to divert Seth’s almost classic FASD pathway through life. No matter how many positive experiences he has, or how often we help him, he seems to have a prohibition against happiness. He takes somewhat typical life experiences and threads them like little millstones around his neck.  He knows every one of them intimately and when things are going well, he picks one out, dusts it off and then gets caught up in the injustice and injury he felt at the time. He appears unable to interpret these little life lessons constructively.  

Seth is thirty now and his innocence has gone. He no longer seems to have dreams for himself outside of drugs and money. The excitement I used to see in his eyes has been replaced by frustration and a dull low-level anger which needs only a light poke to ignite. As I write this in early 2015, he is a stranger to us and we are no longer allowed, or able, to help him unless it is by giving him money. This has been the pattern of our lives since he was thirteen. We had to give him money otherwise he would punch a hole in the wall, steal from us or make my life miserable. Giving him money seemed the line of least resistance. Now that we are no longer aiding this behaviour, our lives are quieter and more predictable, but I wait for the day the police knock on the door with news of him, even as I hope and pray that day will never come.

When I first saw the words Fetal Alcohol Syndrome, I wondered if I could deny that Seth had FASD. If alcoholism is the only disease that tells you that you don’t have a disease, then as an alcoholic I could easily have told myself that Seth didn’t have FASD. Thankfully, the thought matured. If I was going to cope with this, I would do it on my own terms. I would acknowledge responsibility and contend with it that way or not at all. I would not deny it or rationalise it or attribute it to symptoms of ADHD, mental illness or drug psychosis. This was my responsibility and I would actively work with Seth and Mick so they could be the best they can be.

At times, he has been the best he can be and he has had happy experiences; sometimes he has even been happy for longer than a day. Unfortunately, any positive, happy or disability-defying experiences have not been sustainable. Clearly now, Seth’s future is not bright, and although I hesitate to say that it is a fait accompli, there is nothing in the past which would cause me to expect it is going to be different. At this time in his life his misfiring synapses[1] and damaged neurons[2] have created a pathway for him with considerably more speed bumps than the average person.

On the other hand, while Mick must manage epilepsy and migraines, short stature and a sunken chest, he does not have the behavioural problems that have plagued Seth. He has a positive outlook, and if he does have little millstones around his neck, he has either hidden them well or forgotten about them completely. It is possible there are IQ points he doesn’t have as it was always clear he would be working in semi-skilled jobs rather than taking the academic route and going to university. As a result, he has missed opportunities for education that could have given him many rich financial and personal rewards.

Nevertheless he has worked hard and is now earning good money as an operator in the coal mines. When he was young he saved a dog from being sucked through a storm drain. At twenty-six, he saved several people from drowning in Bali. Now he is again risking his life to save others as a member of one of the mine’s rescue teams. On the whole, he appears to have everything he needs and wants. Most encouraging of all, he says he is happy and in fact, he doesn’t think he has ever been depressed. Mick has always been FASD ‘success’ and is the example of the spectrum about which we rarely hear. Whether it was genetics or accident, I am grateful that he has grown up to be one of the most considerate, content and respectful people I know. He is a wonderful example to all parents who may fear for the future of their children after a positive diagnosis.

When my children were born, I felt blessed and very, very frightened. I had never before allowed myself to be so completely exposed and defenseless. I knew that if anything untoward happened to my children, anything at all, then I would die. When I found out about FASD, part of me did. Fortunately, the best of me is still here helping my boys and their families whenever I can and raising awareness of FASD.

Mick and Seth were conceived to be individuals with hopes and dreams and the potential for good. They were cherished with a love so pure it was, like infinity, almost impossible for me to comprehend. I thought my love for them was the most, the best, the purest, love possible from a mother until I realised that was what being a mother felt like. Now I love my grandchildren with the same pure love and devotion.

Learning about FASD and the potential problems our family might be required to face was daunting. The pathway down which countless families living with FASD must travel can be harsh and unforgiving. Knowing that some have met these challenges head-on with their children eventually able to live productive and happy lives gives us all hope.

Even if people with FASD can’t always be accountable, parents can. We only have to tell one person who may not have known that alcohol is a teratogen – and we have helped shift the balance.

A woman does not set out to harm her unborn child. If it occurs the reasons are multifaceted and complex. When doctors do not fully inform pregnant women about the dangers of alcohol and pregnancy, they are effectively sacrificing the child’s health and wellbeing for the sake of the mother’s stress and anxiety levels. There is no way the stress and anxiety can be avoided but there is a way that the child’s health and wellbeing can be improved. The sooner a pregnant woman stops drinking the healthier her baby will be.

My experience with FASD tells me that when your affected child yells at you, it’s through frustration and being overwhelmed with too many choices or problems, even though they are choices that are very easily made by you or me. They need you to know that when they persist about something it’s because they cannot change their mind, not because they choose not to. They want you to be there for them regardless of how much they annoy you or how often you have to bail them out of some crisis in which they have become unintentionally involved. They also need you to help them obtain medication and other items and services that will improve their quality of life. Above all, they need you to keep coming back to them no matter how many times they tell you to leave them alone.

Then again, if they show behaviours that are dangerous to themselves or to others that’s when they need you to be particularly strong. You must do whatever you have to do to ensure the safety, health and wellbeing of everyone including yourself.  Not being able to cope with your child is not an indictment of your ability as a parent or as someone who loves your child, - it’s a matter of survival. Because occasionally, the damage is so severe that there is very little help outside of an institution. Now and then, no matter what you do or how many services you access, nothing will stop them from destroying themselves.  For the moment, I think Seth is an example of the latter.  

This is the point at which I decided on the title of this book. Being educated about this condition while pregnant is a disturbing experience. There is no way to do it without disturbing those women who have already consumed alcohol. Nevertheless it’s a responsible disturbance. Something must happen or we will be lost. In 2010, the Australian National Drug Strategy Household Survey found that 48 percent of Australian women continue to drink while pregnant.

I frequently wonder how different Seth’s life would have been if I had not been one of those 48 percent or if Mick had been diagnosed with FASD in 1981 when the paediatrician thought he showed signs of ‘retardation’.

Diagnosis is prevention so − Seth would not have FASD.

What would he would be like now? If only I could take just one glimpse of him without FAS – just one tiny peek would be enough to sustain me for the rest of my life. If only I could see him with friends, respected at work, loved by his wife, treasured by his children, proud of himself … but none of those little vignettes will ever be seen − not yet anyway – if ever. These ‘if onlys’ can be so seductive that just one fleeting thought can stop me dead. I try very hard to stay in the present. Looking into the future can be destructive. Nevertheless, it’s very easy to become entranced by the possibility that in some other dimension or replica world, Seth is living the way he was meant to live – free from a preventable disability. It is a most beautiful dream and one I would give absolutely anything to be real. My life would be the most effortless exchange imaginable − but this is not the way the Universe works.

There are also advantages of being a birth mother. It allows me to more readily connect with certain people where other trainers or presenters may not. That connection is critical. Presenting on FASD almost every day is a weighty thing when you are a birth mother. Continually being reminded of the complexity of the damage and the possibility of multigenerational epigenetic changes is heartbreaking. Nevertheless, I’m not the only one suffering. I think particularly of those people who come to a presentation for work-related professional development only to be broadsided by a personal connection they hadn’t known was there.

There are many wild rides with this condition. I have felt every emotion of which a human being is capable and I’m grateful. The lows make the highs higher. Without the grief and anxiety, the times of contentment would not be as significant.

I remember feeling excited and happy when Seth answered the phone once with an ‘oy oy oy’ after weeks of moody, broody silence. It wasn’t last week or last month, or even last year. It was around ten years ago and I will never forget the joy of hearing his buoyant voice. I could not have felt that level of happiness had I not experienced despair. If everyone was joyful all the time, what would it mean? Wouldn’t you want to feel something other than joy? Some other emotion? Wouldn’t worry or concern be almost seductive? I think it would. I also think we should be grateful for the difficult times we have as parents of children with FASD, because without them, we wouldn’t experience the opposite − overwhelming love and devotion.

Not all the problems we birth mothers experience are related to grief and loss or the behaviours of our children. Some of our difficulties result from contact with service providers and medical professionals. Some will say they understand the condition and then proceed to make life more challenging by demonstrating they do not. Some ask me why I didn’t know that alcohol was dangerous. Others say with a smirk, ‘If what you say is true, everyone would have FASD’. Yet others ask why I am doing this to myself, failing to appreciate that I am there so they can help my son, not because I want or need absolution from them.

Over the years I have patiently advised a number of support workers that my son can not take responsibility for his actions and his life just because he has enthusiastically agreed to do so. In her arrogance and undeserved over-confidence, a newly degreed social worker takes me to task. I have been treating my sixteen year old like he was five. I told her he has a developmental disability. Perhaps his ability to communicate has led her to forget this important fact.

Since he speaks well and is polite and attractive, she tells me that I have to trust him otherwise he will never learn how to be a man. She tells him I should be allowing him more flexibility, permitting him to make his own mistakes but that if I do, he will have to accept the consequences. Shoe looks at him - does he think he can do that? She waits. I sigh. Eagerly he reports that’s all he really wants and he is willing to accept whatever happens as a result of his decisions. The problems in the relationship are clearly because Mum is unable or unwilling to let go.

As I walk out with my son politely holding the door open for me, my stress and blood pressure at levels incompatible with life, my son tells me if I won’t give him money for drugs he will kill himself. They watch us talking as we walk up the street and mark on the records they give to their funding body at the end of the financial year, ‘parenting advice − successful outcome’.

I am aware that I’m generalising and that I could just as easily use positive examples to make a different point. There are many where service providers, social workers, psychologists, medical professionals and others have gone out of their way to help patients or clients. Unfortunately, in Australia there are far more of the former than the latter.

Many people have told me their worker glossed over the dangers of alcohol, didn’t mention alcohol or said it was safe to drink alcohol while they were pregnant. If it had been over thirty years ago, like it was for me, it is understandable – devastating yet understandable − but last year?

This response from service providers shouldn’t be happening. It’s only a matter of education and the situations above would not occur. Parents and carers would have the support they need to obtain an early diagnosis and a management plan, both of which will help their child avoid secondary disabilities. This is the support they are legally required to have because they live in a country which is signatory to the Convention on the Rights of Persons with Disabilities which says in part:

 

 

When   parents tell children they have FASD

 

Sandra and Jessie:

I sat my 8 year old son   down yesterday, and told him about his diagnosis of FASD and how it came   about and why he struggles. It was all handled really well till he asked me   why did mum (my sister) do that to him? Didn’t she like him or want him and   why would someone do that their baby? I got a bit emotional over that but hid   it from him. I explained that some people just don't know what happens when   they drink alcohol with babies in their tummies, and how mums always love   their kids and would never hurt them on purpose. In his innocence he said   'I'm glad she gave me that ‘cause I love you being my mum'. I was speechless,   except to say, 'I love you too my son!'

Jennifer and Donna:

After much soul   searching my husband and I decided to tell our girl that she has a Fetal   Alcohol Spectrum Disorder. We felt we owed her the truth. Her actual   diagnosis is Static Encephalopathy - Sentinel physical findings and Neuro-behavioural   Disorder Prenatal alcohol exposed. Clearly this would be above her   understanding. She is chronologically 10, but emotionally and behaviorally 5.   I kept it simple by explaining that all the testing we did at the clinic   resulted in a diagnosis of FASD. She asked what that meant and I told her in   the same fashion. I explain everything to her; with complete honesty. I told   her that when mummies drink alcohol when the baby is in her tummy it causes   some problems with the babies brain wiring ... that FASD is the reason she   finds things hard or frustrating.

She sat for a minute   quietly. I could see in her eyes she was processing what I'd just told her   but my heart beat was all I could hear. She looked up at me with a small   frown on her face and I held my breath.

She asked, "Mummy,   if you had known, would you still of drank alcohol?"  I told her the truth. "Most definitely   not!"  

I asked if she felt   angry with me and if she did that would be ok too.

"No, of course not"   she said.

I guess I needed some   soothing myself as I heard myself quietly ask, "Do you still love   me?"

"Of course I do ....   Even if you killed the dog I would still love you!"

I cried with relief. I   held her close and soaked in the moment. I thanked God that I had this   precious beautiful girl as my daughter…. Just as she was
  

 



[1] A synapse is a junction between two nerve cells, consisting of a minute gap across which impulses pass by diffusion of a neurotransmitter.

[2] A neuron is a specialised cell transmitting nerve impulses; a nerve cell

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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