FASD and the Family

FASD presents complex and dynamic challenges for families. Sometimes these are hard to manage or treat. It is not uncommon for some people to misunderstand the unique problems that children and families who live with these challenges encounter.

The thing I'm learning most from the stories told of families living with a child with an FASD is there is a lot of unpredictability. We will face situations we did not expect and have to figure out what to do. I call it the 'eggshell effect' (as in I'm always feeling a little like I'm walking on them!)..."
—Mother of son with FASD. Posted originally here

According to the National Organization on Fetal Alcohol Syndrome (NOFAS), "Children diagnosed with FAS or those affected by FASD often come from unstable families and may be at greater risk for physical abuse, sexual abuse and neglect. Perhaps as many as 85 percent of children with FAS are being raised not by their birth parents, but by grandparents or other relatives, foster parents or adoptive parents. Many of these children have life-long learning and behavioral problems caused by organic brain damage. This is extremely stressful and can be overwhelming for any parent or caregiver. These children may require a range of specialized social, educational and legal services in addition to medical services in neurology or other specialties."

This section provides information and links to several of the issues faced by families and caregivers who love one or more persons affected by FASD. Click a sub-page link below to review these pages.

Extended Family

Types of Issues

Parents of children affected with FASD often mention experiencing stress or conflict with members of their extended families. These issues are similar to those faced by many families of a person affected by a serious (and hard to understand) disability, such as autism, ADHD, or mental illness. Most criticisms are motivated by sadness and disappointment that the real person does not fit the ideal of what the grandparent, aunt, uncle or other relative expected of the child, teen or adult.

In general, parents say that unsolicited advice or opinions seem to be the largest problem. Comments such as "If you would do 'this', then this problem would just take care of itself."

Criticism of treatments that the parents seek for their child is another problem. This is usually aimed at a parent who has chosen an experimental or controversial therapy, such as a nutritional approach or a psychiatric drug treatment which the relative doesn't trust.

Accusations that are thinly veiled, which are interpreted (and sometimes intended) as accusations of near child abuse are an issue as well. Parents who elect to not vaccinate their FASD child are often the targets of these comments.

The "adoption attack" is one card that may be played by a grandparent of an FASD child. This person usually was not in favor of the marriage or of adoption to begin with, and approaching the disabled child scenario is only too happy to be able to finally say an "I told you so." This exhibits itself in the blaming of FASD on the person that married into the family.

The attempt to take over and assert control of the family by an in-law is an extreme manifestation of the problem. Any in-law can do this, and by disempowering the parents of the FASD child, the entire family unit becomes at risk.

Resolving Issues

Don't preach or lecture. Ask your in-laws questions that lead the conversation in the direction you need it to go. Don't let them off on a tangent, if they try to take over at this point. Gently redirect the conversation, as you need it to go.

In-laws who feel powerless want to help. The problems result when the method of their help and your decisions clash. Rechanneling this is a way to keep them involved, help them regain some control over a loss they are unsure of how to cope with. In the process, it will help you.

Analyze how you can enlist your family's help. Babysitting, researching, interacting with your FASD child to enhance some therapies you have started are some options. If the in-law who has been a problem begins to feel useful and instrumental in a child's progress, you have made an adversary into an ally.

When you deal with your extended family and you sense that their dreams for your child's place in the family are shattered, reach out to them. Remember, you aren't the only one grieving, and they most likely have no support among their own friends. If grandma and grandpa had planned on taking their grandchild every summer on fishing trips, and you know this isn't going to happen, not only do you have to redo some goals and plans, but so do they. They have a grief process too. Talk about it, openly, honestly, and with sensitivity. Invite them to your support group, to visit your child's school or to an IEP meeting with you, or to accompany you to an appointment with your child's doctor.

With grandparents in particular, you may have to expend a great deal of energy in educating them. It is only natural they would think that if you would just do "thus and so" this problem (FASD-related behavior) would go away. FASD was not talked about when they raised children, and probably unheard of when they were kids. Help yourself by giving them books and by printing material from Web sites you have found helpful. Don't give them or email everything all at once, but over time teach them what you know, and show them why you do what you do.

The bottom line with in-laws is really very simple: Figure out their motive for attacking you (or ignoring you) and then communicate to that motive.

Remember that communication is a two-way street. Be willing to listen. And always remember that you are in charge of your child and his or her treatments. You may find yourself biting your tongue a lot at first, but patience and persistence can go a long way in establishing a stronger and happier relationship with your extended family.


Useful Links

There are few web sites addressing extended family issues and FASD. Most of the links to external Internet sites here are targeted toward families with children with other kinds of special needs and behavioral challenges (whether caused by trauma -- such as environmental neglect -- or neurologically based) which can cause misunderstandings, miscommunications, or other kinds of difficulties between the child's family and the extended family.


Your Extended Family
When the Extended Family Doesn't Understand
Fair-Weather Families
Special Needs Children and Holidays with Extended Family Don't Always Mix
Extended Family Members' Emotions in Special Education
ASD and the Extended Family Autism Spectrum Disorders (ASD) and FASD are both often misunderstood by extended family members, and this site may have useful information.
Helping Parents of a Child with RAD (Reactive Attachment Disorder)
A Letter to Grandparents of Children with RAD Children with fetal alcohol damage are sometimes also diagnosed with RAD (Reactive Attachment Disorder, and symptoms may overlap.
Grandparents of Kids with Special Needs A support network for grandparents; not FASD-specific.
The Friendship Circle. A site devoted to families of children with special needs. Not FASD-specific, but full of brief articles on helpful topics.
A long-time caregiver writes an honest plea for help and support  Not FASD-specific, but an interesting piece about the "costs" of long-term caregiving.

Adoption & Fostering
The vast majority of parents of children with an FASD are adoptive or foster parents. Some knew about FASD when they welcomed their children into their family, while others did not. In either circumstance, information is the key to success in raising children with an FASD.

The foster or adoptive parent of a child with FASD assumes a responsibility far beyond that normally associated with parenting. The constellation of physical, intellectual, and behavioral characteristics that typifies many persons with FASD can create a very demanding situation for any family. The children often require constant supervision. Parents require an extraordinary amount of energy, love, and most of all, consistency. Therefore, these parents need support in their efforts. This support can often be provided by the social service network to help prevent the burnout that often accompanies high-stress parenting situations.

All adoptive or foster parents must have a realistic view of the child's functioning in order to develop reasonable expectations and plan appropriate interactions for the child in order to minimize management problems. Still, despite the many problems of patients with FASD, these individuals have a great capacity for love and contribution to family and community. The challenge of caregivers and service providers alike is to help these children harness their potential and find their place in the world.

Below are some types of services that may be available to assist adoptive or foster parents address the challenges of rearing a child affected by FASD.

Support Groups

Participating in a parent support group set up around the needs of those parenting disabled children can be an ideal vehicle for parents to share information, gain support, and overcome the feeling of being "the only one" experiencing problems.

Financial Assistance

Many caregivers of children with FASD will require some form of financial assistance as well. Adoption of children with FASD, as with other special needs children, can mean high costs and low subsidies for families. An advocacy-oriented caseworker can be an invaluable resource in helping potential foster and adoptive families identify available financial resources and negotiate their way through the maze of paperwork often required.

Respite Care

Many parents and foster parents of FASD children benefit from respite care. However,  they need to seek out existing programs which might serve them. The daily stress and demands generated by a child with many daily needs can easily trigger parental burnout. Once a parent support group is operative, a rotating system of informal, needs-based respite care can be arranged among participating families in some cases.

Advocacy

Children and parents dealing with the problems of FASD need strong advocates. Advocacy must come from both the parents and the professionals involved. Their different spheres of influence and different roles must combine to ensure that the needs of both parent and child are being met.

 
Parenting
Parents of children -- young, adolescent, and adult  -- who have FASD have many challenges. It's difficult to create a short list of parenting issues. Here are some topics discussed in online support groups:
  • My child is so impulsive, and so naive! How do I keep my child safe from harm from others who would take advantage of him?
  • My child can't seem to do anything unless I stand over him and tell him what to do, how to do it, when to do it, and so on.
  • I can't get my child to take showers / brush her teeth / comb her hair / sleep through the night / eat regularly / do homework / take her meds!
  • My child's lying and stealing make it impossible for anyone in the family to trust him at all!
  • My child acts like an angel at school, but at home she's a holy terror!
  • How do I manage my child's temper tantrums, rages, or violent outbursts?
  • What do I do about my child and boys? She's not mature enough to date, but she wants to!
  • My child isn't impaired in the "I.Q. sense", and can be really clever and fun. But he lacks "common sense." Will he end up homeless, in jail, or worse?
  • Why does every day seem like the movie "Groundhog's Day" with my child? She keeps "screwing up" in the same ways over and over! Will she ever learn?
  • How do I get the services my child needs from the resources in the community that he needs? No one else seems to believe that he is "disabled enough" to qualify for help!
  • Who will be there for my child after I'm not able to any more? What will become of him if I become disabled, when I'm too old, or after I die?
  • My child needs more help than I or my family can give him right now. Is there someplace for him to go, like residential treatment or a group home?
  • People tell me I'm over-reacting about my child, and everything will work out. I love her so! Am I crazy to worry so much?
I look at our (FASD-affected) son as being like a music box that needs to be wound up…over and over. With something immediately motivating him or someone directly supervising him, he can do things seemingly without difficulty; but he can’t (or won’t) do those things with any less structure. I could agonize over “can’t” versus “won’t,” but the result is the same. So, we have to plan according to his general behavior patterns.
    

    Julie, to the OlderFAS email list, 2012

Use the links below, or see some of the other pages in the FASD and the Family section, to start getting some answers.


Useful Links

Fetal Alcohol Syndrome: Parental Experiences and the Role of Family Counselors
Developmental Overview of FAS/E Through the Eyes of Parents
Fetal Alcohol Syndrome: A Parents Guide to Caring for a Child Diagnosed with FAS
Use Structure to Help Children with FASD
Help Children and Teens with FASD Develop Routines
Help Children with FASD Make Decisions
Help Teens and Adults with FASD Make Decisions
Help Children with FASD Learn to Cope with their Senses
Help Your Child with FASD Make and Keep Friends
Help Children and Teens with FASD Learn to Handle Transition and Change
Help Children and Teens with FASD Learn about Ownership
Help a Child or Teen Understand Time
Help Your Child with FASD Figure Out Reality and Fantasy
Help Your Child or Teen with FASD Take Part in Sports and Activities
Help Teens with FASD Manage Money
Practical Guide to Raising Kids with FASD or Drug Exposure A radio podcast.
FASD Through the Lifespan
Primary Caregiver Issues
Two-Parent Family Issues
Sibling Issues
Extended Family Issues
Special FASD Issues
Tips and Tactics
The Four Pillars of FASD Success, at FASDforever.com
Adaptive Aids for Persons with FASD
Association of Regional Center Agencies (ARCA)
Beach Center on Disability
Cambridge Center for Behavioral Studies
Council for Exceptional Children
Comfort Connection
Best Buddies
Living with FASD A blog written by an American woman affected by FASD.
The Friendship Circle. A site devoted to families of children with special needs. Not FASD-specific, but full of brief articles on helpful topics.
 
Pets & Home

Many people with FASD are kind and gentle with animals, although they may need to be supervised, especially with young or small animals, or with animals whom the individual does not know well.

Petting and quietly watching a pet can make a high-energy person with FASD calmer. The animal's needs are predictable: scheduling feedings, exercise, bathing, grooming, and even training can help a person with FASD add structure to their environment. Pets serve as someone they can trust and count on, no matter what their circumstances are.  Animals are nonjudgmental, and children have been known to feel more comfortable around their pets than with other people.

Supervised time-outs with kids and pets and calming moments with animals are some of the ways that animal companions can be valuable family members and friends to persons with FASD. Some families are employing service (therapy) animals to help their FASD-affected loved one.

It is important to remember that pets can be vulnerable to an individual in a rage. If a person with FASD becomes enraged and out of control, any pets should be kept safely away until the episode passes.


Useful Links

4 Paws for Ability FASD Service Dogs
Animal Assisted Therapy and Clients with FASD

Primary Caregivers
I work ... as a Parent Liaison for (the Minnesota Adoption Support and Preservation Department). Once I had a phone call from a lady who blurted out, “How long does God expect me to do this?” She went on to say that she did not like her adopted child (with FASD) and did not want to live with him anymore.

I explained to her that what she was feeling was common, and what her child needed was a correct diagnosis, services, and for her to be calm. What she needed was respite, hope, a support group, to be calm, knowledge about FASD and parenting techniques specific to FASD.

   
— John Hays, HaysKids.org 2009

Words to Live By

  • Create structure, routine and consistency.
  • Be positive; laugh whenever you can.
  • Argue with them less.
  • Engage them in activities that they enjoy.
  • Hug them and tell them you love them, even when you are upset or angry.
  • Crying is OK.
  • Monitor and regulate what they watch on television, video, computer, internet, etc.
  • Focus on positive decisions they make.
  • Set realistic expectations; do not ask too much of them.
  • Get enough sleep, good food, and exercise. They need you to be at your best to help them be their best.
  • Get support for yourself!
  • Never give up!!!!

"Mindfulness helps you go home to the present. And every time you go there and recognize a condition of happiness that you have, happiness comes." — Thich Nhat Hanh


Just having positive experiences, feelings, and thoughts is not enough. Due to the brain's "negativity bias", positive experiences pass through the brain like water through a sieve, while negative experiences are caught.

We need to engage positive experiences actively to weave them into the brain.
  • Look for positive facts and let them become positive experiences.

  • Savor the positive experience for 30 seconds, feel it in your body and emotions, intensify it.

  • Sense that the positive experience is soaking into your brain and body­ allow it to register deeply in your emotional memory.

  • Use an image - water soaking into a sponge, balm soaking into dry lips, placing jewels in a treasure chest in your heart.... Installing, downloading... find what works for you.
Kinds of positive experiences to take in:
  • The small pleasures of ordinary life

  • The satisfaction of attaining goals or recognizing accomplishments- especially small, every-day ones

  • Feeling grateful, contented, and fulfilled

  • Feeling included, cared about, liked, respected, and loved

  • Becoming aware of good feelings that come from being kind, fair, generous, loving, and forgiving

  • Recognizing that you are alright in this moment, there is no threat

  • Recognizing when you feel safe and strong

  • Recognizing your own positive character traits

  • Spiritual Realizations

Useful Links

For Caregivers, From Caregivers
How to Care for the Caregiver of Children and Youth with FASD
Twelve Parenting Goals for Parents and Caregivers
Caregiver Syndrome Is a Recognizable Medical Condition

Downloads

10 Tips For Primary Caregivers

Accessing Resources Tips for Using the Telephone

Four Pillars of FASD Success

Siblings
At about 3 yrs old the differences between 'alcohol affected' and 'non-alcohol affected' kids seems to become very pronounced and obvious to our other children. Lack of impulse control, extreme emotions, and a difficulty learning the basic rules of family interaction lead to the logical questions from older kids in our house. "What's wrong with my brother?"
— Talking About FAS With Siblings: Question From A Friend.....


Parents of a child affected by FASD often wonder how to explain FASD to his or her siblings. When the child with FASD has an uncontrolled outburst, or when he or she takes a toy or other valuable from their room without permission, or when the parent(s) treat the disabled child differently because of the FASD, the non-disabled ( "NT" or neurotypical) sibling(s) cannot help but be impacted by the condition.

With the time and energy needed to supervise and manage the ongoing needs of a child affected by FASD, it can be difficult for the adults in the family to carve out meaningful time to spend with the child or children in the family who do not have FASD. Parents are caught in the crossfire trying to emotionally absorb the anger and
resentment from all sides.

Common Sibling Issues

 
As in any family, positive and negative feelings may develop between siblings or because of siblings. Here are a few issues that siblings of a child affected by FASD may face:
  • Embarrassment of the sibling’s behavior or appearance.
  • Anger or jealousy over the amount of attention the child with the disability receives. This may lead to a desire to act out in negative ways, either to get the parents' attention and/or to dull the depth of their own conflicted feelings about their disabled brother or sister.
  • Isolation ("None of my friends have a sister with FASD!" "I can never have anyone over because of my brother's behavior!")
  • Pressure to achieve in order to “make-up” for the disabled brother or sister’s inabilities.

Balancing Parenting Between the Child with FASD and the NT Child

Parents describe their exhaustion which causes them to neglect the needs and activities of their normal children. Parents agonize over the unmet needs of all their children because the critical needs of the child with FASD monopolizes both their time and energy. Siblings feel angry and resentful toward their unavailable parents while at the same time they resent the child with FASD for embarrassing the family with outlandish behavior. Parents are not only exhausted physically from caring for a child with special 24-hour needs, but they are emotionally drained from the anger and bitterness they receive from everyone.

With a child with FASD and a child who is neurotypical (NT), parents usually must try to keep track of two sets of household rules:
  • Some rules favor siblings who need less supervision and consequently are allowed more freedom to be alone with their peers. The child with FASD who has a normal IQ will eventually recognize the unfair rules and can become very resentful and defiant toward their siblings and parents.
  • Other rules favor the child with FASD because the nature of the disability means the child with FASD often has a volatile temper, has great difficulty controlling impulses and can't stay focused on any task. Parents must handle discipline differently, lavishing praise on the child with FASD for the simplest task. Outraged, the NT siblings complain ("You'd never let me get away with that kind of behavior!").
This rules gap may become so severe during the teen years that out-of-home placement is seen as critical for everyone's safety.

When the Nondisabled Sibling Recognizes FASD as a Disability

Most siblings of a person with FASD eventually realize that their brother or sister is not deliberately tearing the family apart, but is disabled. This can lead to a person who is more caring, patient, and understanding of persons with special needs in general.

However, some siblings face other challenges with this realization:
  • Some siblings become overburdened by guilt, and then turn their anger inward on themselves. ("I'm such a terrible person for hating my brother.") Some siblings become depressed, and sometimes suicidal.
  • Sometimes destructive co-dependent relationships can develop between a nondisabled sibling and a child with FASD. Sexual assault and incestuous relationships have been reported
  • Some parents describe the intensity of the adrenal "rush" surrounding the tension associated with the child with FASD. This constant state of tension can become addictive, especially to siblings who may never have experienced life without the chaos of living with a child with the daily needs of many persons with FASD.

Effective Strategies

Here are a few ideas for parents in treating all of their children --disabled and "normal" -- in loving and fair ways:
  • Treat the child who does not have the disability as a child, not just as another caregiver.
  • Have "date" nights (or afternoons or mornings) with each child to give them the attention they crave. 
  • Make a standing ritual where the NT and the child with FASD child always does a particular activity (such as grocery shopping, shooting baskets in the driveway after dinner, walking the dogs, etc.) with the parent alone.
  • Have someone whom the child who has FASD take him or her into the community for a while (or even overnight or longer, if that is feasible), to give the parents and the other kids a "breather."
  • Make an effort to speak openly --and respectfully-- about disability and about the challenges faced by the brother or sister with FASD, in order to create an atmosphere where all the siblings feel it's okay to talk about it.  Answer their questions in terms they can understand. Take time to ask the sibling how they feel about things. Encourage them to express their feelings openly even if you don’t like what you hear.
  • Arrange for respite for the FASD-affected child, if possible, so the son(s) or daughter(s) without the condition feel comfortable inviting a friend over for a sleepover or a play date.

Sibling Issues in Adulthood

Many of these issues remain concerns for siblings even after they become adults. For example. siblings who do not have a disability may be concerned about the future of their sibling with FASD after the parents die, especially if the FASD-affected brother or sister still lives at home.
When the questions do come I usually ask the kids to tell me what they see as wrong and we work from there so that I don't overwhelm them with facts or details. It's not a secret - it's a reality, and in the long term (like after my husband and I die) these siblings are hopefully going to be strong advocates and supporters for our kids with FASD issues.
— Talking About FAS With Siblings: Question From A Friend.

Useful Links

What Do I Do? Helping Your Kids Understand Their Sibling's Fetal Alcohol Spectrum Disorder (FASD)

Two-Parent Family

The Challenge

Any couple who has a child with a disability like FASD will experience many challenges, including such as repeated physical and emotional crises, interactive family issues, ruined schedules, and additional expenses which can create financial burdens for a family. It may be during these times of physical and emotional stress that parents will take out their frustrations on each other, the other children, or even the child with the disability.

For the relationship to survive, the couple parenting a child with FASD needs to have a coping mechanism. By taking care of each other and your relationship you are not only working toward the future you really want, you are giving your children the benefit of a stable, loving home to grow up in.

Knowing how you should react to challenging situations at home is one thing, but being able to do it when your buttons are all being pushed is another. This is where both parents can and should help each other.

In many homes, when the "FASD" buttons are being pushed, one button pushes one parent more than the other. When that happens, if the (temporarily) calmer parent can respond, things go much better. When the stressed-out parent interacts with the ramped-up child, it rarely goes well.

Responding to the Challenge

Below are some effective strategies for coping with the everyday stresses that can strain even the strongest relationship when a child with the challenges of FASD draws so much time and energy from each day.

Take Care of Your Individual Selves

When your child has a FASD, your own needs as individuals and as a couple can get lost. But it never helps to lose focus on your relationship. As hard as it may sound at first, start to think about taking care of yourself and adding some fun and enjoyment into your life even though you might feel guilty about doing it.

Reach Out to Your Partner

When possible, share the responsibilities at home by working together on chores, childcare, and education. It’s helpful when both partners work to learn about FASD and any other conditions your child may have, when you both prepare for and attend care meetings, and so on. Both partners should get involved in the special needs community if possible – there’s so much to manage every day that reaching out to your partner, relatives or friends can help lessen the burden.

Communicate

When a person is in pain he or she may withdraw, or become frustrated and angry – after all, it can be hard to talk about something we have no power to change or fix. At times the reactions of each partner in a couple can become polarized or opposite; for example, one of you may notice problems in the child and tend to worry and feel negative, while the other holds hope and optimism that in time everything will be fine.

Try to consider all of your feelings toward your child - both positive and negative – and discuss issues in ways that will help both of you feel understood and find solutions to problems. In general, the way forward requires working through the painful feelings with your partner and arriving at some form of joint acceptance and effective co-parenting strategies.

Seek Outside Help

Professionals---social worker, psychologist, psychiatrist, counselor or family therapist-- can help you understand the needs of your children, yourself and your marriage. Some people are reluctant to take this step, but when it becomes hard to function from day to day, this kind of help may be in order.

Just as you’d consult more than one specialist for your child if necessary, do the same for yourself. If your partner isn’t interested, then start by yourself. Sometimes a change in one partner changes the chemistry of the situation for the better.

Find a Community of Kindred Parents

Getting together with other parents who have "been there" can be a lifesaver to helping couples get through the stressful life events that inevitably happen in a family rearing a child with FASD. Other parents who have children with special needs understand what you are going through in a way no one else can. The support is also mutual, so you don’t feel like you are just taking – we all help each other to cope.

Get Away

One thing many couples find essential is time away – both the briefer date night and once in a while a complete get away that involves having a respite care person or resource for the child with FASD. If you and your partner have not got that kind of thing set up yet, I urge you to get busy doing so. If you don’t have funding – look into family and friends, maybe it can be reciprocal. But in any case – do it. There is nothing so rejuvenating for a loving relationship as getting away from the stresses of daily life and stresses of parenting, to really invest some time and resources into the marriage.

Focus on the Partnership for the Long Haul

It is imperative that the two of you fully realize that you are on the same team. Though the child or children are not the enemy here – neither is your partner. You will disappoint each other and ourselves at times, but if we can keep the long view – that this person is here to help me, and I am here to help them, you both will be ahead of the game. If we can be forgiving and have a sense of humor, the whole family will benefit.


Useful Links

Finding a Balance Between the Joy and the Sorrow: Parenting Children with Special Needs
Love, marriage and special needs
Tips for Sustaining a Healthy Marriage in Families with Children with Special Needs

FASD in Mate

This information is for the partners and sweethearts of men and women affected by FASD.

Why Didn't I See What Was Wrong?

FASD is often an invisible condition. This is especially true when the individual affected by prenatal alcohol exposure lacks the external (especially facial) characteristics associated with FAS, and there is no documented history of maternal alcohol use during pregnancy.

The fact is, most people who were prenatally exposed to alcohol look like people who were not. (In fact, most parents of children with FASD would claim that their children and teens with the condition are very good-looking!) They go to school, work, have friends, hobbies, etc., just like people who were not exposed to alcohol in the womb. And, they try very hard to hide any difficulties the FASD may cause them!

(Although I was a nurse and knew what FAS was, I thought everyone with it had a low IQ. My husband was very bright. So he couldn't have FAS.)... I went through our whole marriage lacking totally (any) understanding that Bob was so affected neurologically. He had no ability to change this behavior, but I believed rather there was a certain “meanness” on his part that he chose to hold onto... for some unknown reason to hurt (me) -- just as his sisters had believed him (even though they had told me that their mother was an alcoholic who was never sober during her entire pregnancy with Bob) as a child to simply be destructive and mean-spirited. 

STILL, I was married to him over 40 years, he was the father of my children... (and when he died, I grieved his loss).
     
— Karen L., widow of a man never officially diagnosed with FASD. Posted on the FASLink email list, 2012
 

When a person functions within the normal or above-normal range in many areas (academically, occupationally, athletically, etc.) of life, it's normal to believe that patterns of strange or unacceptable behavior are "personality quirks" (or lack of motivation or even of "moral fiber"); or that they are caused by environmental influences, or by other physical or psychological conditions, and not by prenatal brain damage.

Like all people, those with disabilities and those without, the individual with FASD was born with a unique genetic make-up and biology. He or she has strengths as well as weaknesses, and their biological and genetic make-up interacted dynamically with the environment they lived in -- then and now. This interaction shaped them every day as they grew up into the person you met and the person you know.

When you fell in love with someone with FASD, you fell for the whole person. And that person tried hard to show you the best of themselves.

If you have spent a long time with the person with FASD, you probably saw signs that something was different. For example, your spouse had trouble handling money (they forget to pay bills on time, or they spend their entire paycheck on "fun" things, instead of of taking care of food, rent, and other necessities first). Perhaps your boyfriend took things from you (or your family members) without permission. Perhaps your husband had trouble keeping a job; or he had trouble remembering how to do complex tasks unless he had done them many times. Maybe your girlfriend became "friends" with, or was easily fooled by people you suspected shouldn't be trusted. Your wife may have lied to you about things you knew to be lies. Your sweetheart may have gotten very angry very quickly, and then just as quickly calmed down. Maybe he or she lost important things over and over again, or gave valuable things away.

When your beloved did/does things that might be related to FASD, (such as problems with memory or problem-solving, or having a quick temper) which may get them into trouble, the common response of many persons with FASD is not to ask for help or to admit they don't understand. Instead, they claim that somebody else was at fault; or they get angry. Most experts agree that the FASD-affected person would rather be called "bad" than "stupid".

Why Didn't Anyone Tell Me that My Spouse/Sweetheart Has/Had FASD?

It could be because no one knew that he or she was prenatally alcohol-affected.

In many cultures, drinking alcohol has historically been a societal "norm". But drinking too much has generally been frowned upon, especially by women, and particularly by mothers. Therefore, in the United States and most other countries, it has never been unusual for women who drank while pregnant (or before they knew they were pregnant) to withhold information about their use of alcohol from their doctors and their families. Neither has it been rare for women to deny to themselves the effect of drinking alcohol while pregnant on their own health, and on the health of the developing baby.

And, if the baby appeared to be healthy and strong, the effect of alcohol on its development would not have been considered.

Today, research reports that FASD is often generational. That is, women with FASD are statistically more likely to drink during pregnancy and to give birth to babies with FASD. Therefore, If your sweetheart or spouse grew up in a family atmosphere where the adults (especially the birth mother) also were likely to have an FASD, his or her caregivers and others in the community may not have recognized or accepted that your mate's behavior was atypical for their age. They may have ignored or discounted concerns expressed by teachers or others this his or her performance at school, work, home or in the community wasn't up to societal expectations. Or, the adults may have attributed the individual's behavior to "the way we do things in our family"; or to other causes or influences.

Even when the individual and his or her family do know that your sweetheart was prenatally affected by alcohol exposure, knowing how or when — or even what —  to tell you about this condition and what it means to the person -- and to your relationship -- may have troubled your sweetheart so much that he or she dared not mention it. And this very likely put his or her family in an uncomfortable position, unless they were given permission to tell you!

I Love My Spouse/Sweetheart. What Do I Do Now, Knowing (or Suspecting) That He/She Has FASD?

First, remember that every person with FASD is unique. Below are two perspectives about being married to someone with FASD:

...my husband has FASD ... For him, it's most noticeable in his short term memory issues, his ability to predict consequences, and impulse control, most pronounced when it comes to money.

I realized before we were married that he had FASD. Heck, I realized it before he did! We discussed it after our marriage, and it made total sense to him. The things he built into his life, such as everything being recorded in his Day-timer, etc., all his ways of dealing with FASD.

He's one of the most amazing men I've ever known. — Blogger "Domestic Imp" posted on http://www.welltrainedmind.com/forums
 
It is very hard to live with someone who struggles to be able to empathize or even understand that what they are doing is hurtful to others. It may be hard for them to see that their actions are hurtful to anyone else. This does not mean they don’t care or even that they cannot care but that they are not able to “put themselves in your shoes.” They cannot generalize enough to do the “how would you feel if?"

The more we try to change the person’s environment to accommodate their abilities the greater the successes... The fact is that, at least while the FASD person is trying to learn what you want, they may never fully get it.
I have a dear friend whose husband has FASD. He cannot have access to their money, ever. He will gamble it away. When he hears how they are struggling financially he just knows he can take it and win enough to fix it all. Even though it has never, ever worked for him this makes a great deal of sense to him to keep trying. After all, he sees others on TV and other places winning and solving all of their issues. He never means to empty their bank account and is very shocked when he does but he continues to do it. He is a 40 year old man who has a lot of support. They have learned that the only way to keep him from doing this is to not allow him to have any access to their money.— Blogger FASDMom at http://fasdmom.com/2011/12/12/day-by-day-2/
 

Second, if the benefits of the relationship outweigh the drawbacks, work with your partner on ways to structure the environment to leverage their strengths and minimize their weaknesses.

Third, remember to care for yourself and your relationship, so you do not serve only as your partner's caregiver. That is, avoid acting as if you were his or her parent.


Useful Links

Note: There are no sites specifically addressing being a "neurotypical" (NT) partner of an adult with FASD. The links to Internet "relationship" sites here are targeted toward romantic partners of individuals with other kinds of neurologically-based conditions which can cause relationship challenges, misunderstandings, miscommunications, or other kinds of difficulties between committed partners.


About FASD
Characteristics of FASD in Adulthood
FASD Resources
Special FASD Issues
Frequently-Asked Questions about FASD
The Long Way to Simple
FASD:Knot Alone: Guest Editorial:Nathan Guimont (See page 6, Column 2 of the newsletter.)
10 Tips for Coping With a Bipolar Spouse (Living with a family member with a chronic mental illness has similarities to living with a person living with FASD.)
Asperger Spouses (Aspergers Syndrome is one of the conditions on the Autism spectrum.)
I Think My Husband Has Aspergers… 
A Word to the Wives: Survival strategies for the wives of ADHD men who seem to ignore, forget, and disregard... but maybe don't mean to (Individuals with fetal alcohol damage are sometimes also diagnosed with Attention Deficit disorders, and symptoms may overlap).
Husband with ADHD? Help!
Help! My Partner Doesn't Seem Motivated to Change
How Do You Cope with an ADHD Spouse?

Parenting children with FASD is mentally, emotionally, and physically draining.
John Hays
Founder, HaysKids.org
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