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Photo made and donated by Samuel Nothstine
Photo made and donated by Samuel Nothstine

Birth Parents

Birth Mothers Have a Story

Any pregnant woman* who consumes alcohol can have a child with an FASD.  Drinking patterns in the U.S. for women* in their childbearing years today are more often in a ‘binge’ (or high dose) pattern and this level of alcohol exposure is known to be more harmful for a pregnancy.  While binges are more common, there is a wide range of drinking behaviors from very little to excessive amounts due to an Alcohol Use Disorder (AUD).  Women* who are drinking heavily often have a trauma or family alcohol misuse history and we do not judge them.  We encourage treatment when indicated and support and mentoring is available. One example is the NOFAS Circle of Hope which is an online community of birth mothers* in recovery. The Warrior Mom logo represents the fearlessness and courage of each of the Circle members. In addition, a new app called Step Away is an approach that helps a person with an alcohol use problem to manage their drinking privately and effectively.

*Gender-specific language

The Alaska Center for FASD acknowledges that not every person who can become pregnant identifies as a woman. Although we try to use gender-neutral language as often as possible, much of the current research available currently refers only to “women” when discussing the ability to become pregnant. When citing research, we refer to the language used in the study. In these cases, “woman” refers to someone who was assigned female at birth.

Alcohol exposure even before pregnancy recognition can be enough to cause permanent harm. Drinking alcohol at any time during pregnancy is a risk because the blood alcohol content for the baby is the same as the mother’s* and there are many variables that can influence how a particular mother/baby pair is affected.  Variables can include mothers’* genetics, epigenetics, amount & timing of the alcohol use, nutritional status, age, presence of other health conditions, use of other substances or medications and baby’s genetics).  Most women* stop drinking once they realize they are pregnant. But this realization may not happen for several weeks into the pregnancy so it is possible some harm may have happened. We encourage honesty with health care providers about any alcohol exposure during the pregnancy as the providers have a role in identifying what risks might be present for a pregnancy and for following a baby/child with those risks in mind over time. It is important for a child to have the correct diagnoses so that they can receive the correct treatments and interventions. If the alcohol story is not known this makes it very hard to provide the best care. Contact us for help and support if you are having concerns about your child and are not sure how to go about sharing the alcohol story with a provider.

Are you a birth mom who is stable in your recovery? The Circle of Hope network has a speakers’ bureau that has been trained to do public presentations and is comfortable in “telling their stories.”  Contact Kathy Mitchell to learn more AND consider contacting us to discuss being a co-presenter for the Center.

WAIT- DON’T STOP…  continue reading below for more important General Parenting for a Child Who Experiences an FASD information.

Birth Fathers Matter Too

We have worked with families in which the birth mother may be absent while struggling with addiction and the birth father is raising the child/children.  We acknowledge this effort on the part of the father and know that he also needs support. Raising a child with a potential brain-based difference like an FASD is not easy for any parent and we know that the skills, patience, and resources to do so well may not always be available. Several of the resources noted in the Birth Mother section above can be helpful to fathers as well.  Emerging research in the field of epigenetics is indicating that heavy alcohol use on the part of the father around the time of conception can also play a role in the child’s development and that ‘FASD-like’ symptoms are being seen in some children. Therefore, it is important for men* to consider how they use alcohol as well. Birth dads in recovery may also like the Step Away app to support their sobriety as it helps a person with an alcohol use problem to manage their drinking privately and effectively.

General Parenting for a Child Who Experiences an FASD

Parenting is one of life’s great growth opportunities for those who are lucky to do so but for those who are parenting a child or youth who experiences brain-based differences (like an FASD) the growth opportunity may seem overwhelming some days.  The combination of parenting skill trials, navigating sibling relationships, having to be the child/youths’ best advocate with schools, agencies, and activities they engage in, and needing to be the ‘constant learner’ regarding any new behaviors or challenges that may present for the child/youth is exhausting. Living with a child/youth with special needs can also be difficult for siblings who are not impacted by special needs. In the case of FASD, this SAMHSA resource booklet doc   can be helpful in explaining an FASD to a typically developing sibling in the home.

If your child/youth spent time in foster or other kinds of out-of-biological-parent home care, they may have symptoms of trauma which may compound any symptoms that are the result of the brain-based differences seen as a result of the prenatal alcohol (often combined with substance) exposure. The Alaska Center for Resource Families is the ‘go to’ agency supporting these families and among many fine trainings, we like the Trauma Informed Caregiving and Strengthening Families Series (each is a 6 part series) as healing from traumatic experiences will improve their functional status.    

When a parent/child have found a mix of interventions that work for them it can bring great joy to both the parent and child.  Learning to accept the achievement of smaller more manageable goals, focusing on the strengths, and using strategies to shore up the challenge areas are all helpful ways to promote success and a life well-lived for the individual who experiences an FASD. The FASD Support Network of Saskatchewan Inc. has a nice summary document that provides twenty FASD TIPS for Parents and Caregivers.  Support also can be found at local family support or parenting or mental health care programs, Help Me Grow Alaska resources, local and online parent support groups, and online.  Ongoing research is being done to determine strategies that best help both parents and children as they move through the journey of growing up with FASD. A new app called Families Moving Forward Connect will be in a final phase of testing in early 2021 and is looking for study participants who want to try using the app.

Many families of children who experience an FASD learn that the professionals who are working with their child (such as speech language pathologist, occupational therapist, mental health therapist, etc.) can be viewed and are highly valued as part of their ‘team’ as they can help the parent do their own role more effectively.  Take advantage of their wisdom and expertise as they are there to help both your child/youth and you!

There will definitely be days that feel never-ending and frustrating and parental exhaustion is a common theme we hear from families we have worked with over the years. This can certainly play a role in the parents’ ability to be patient with a child (or adult) who experiences an FASD.   Try to be curious about their unmet environmental needs and the possible trauma and brain-based reasons behind some difficult behaviors like inflexibility when daily routines have to change, difficulty controlling emotions or body movements, ‘oppositional’ attitudes,  poor empathy skills, lack of understanding consequences, etc.  If we think of them as being in distress because they can’t do something rather than being willful, this can go a long way toward a more loving approach.  FASD into Action is one training that can help parents and other caregivers learn how to be observers of the behaviors from an environmental fit perspective. This training is offered periodically by Stone Soup Group in Anchorage and by Alaska Center for Children and Adults (ACCA) in Fairbanks.

We encourage caregivers to help the child and youth who experiences an FASD to explore and discover their passions as this has a huge impact on their self-esteem and skills development and can help them find a peer group. We know that many individuals who experience an FASD have excellent artistic, musical, and other talents. Click here for ideas on how to promote resiliency.

Taking time for doing self-care is not something many of us do routinely but it is especially important for parents and caregivers of children with special needs.  Taking even small measures to make sure to get enough rest, a balanced diet, some form of exercise (walking is fine), doing mindful practices like gardening, making art/crafts, meditation, yoga, or getting connected to a parent support group or Facebook support group can all help to remind us that we are not alone and that other experienced parents may have ‘pearls of wisdom’ to share with us when we may have hit a roadblock.

Recurring grief may be something that sneaks up on a parent of a child/youth who experiences an FASD because they may not be meeting developmental milestones, persists with immaturity, or lacks skills needed for independent living. It is not our expectation in American culture that our children will not ‘launch’ when they reach adulthood so when they struggle to do so, it can feel very challenging.  The grief response is to be expected and we recommend acknowledging it, talking about it with family/friends/counselor, or parents in special needs or FASD-related support groups.  Be gentle on yourself, do self-care as you can, and know that this will pass. One document that outlines supports needed in adulthood well is Supporting Success for Adults with FASD.

For ideas for additional resources see the Basics of FASD - Resources & Research: Strategies for Support & Intervention section of this website.

Finally, one parenting special issue that can be problematic for some youths is that their immaturity combined with sexual awakening may mean that they connect socially most easily with other youths who are much younger than them.  If this relationship becomes sexual, the youth may be at risk for legal consequences.  We recommend that parents begin working with the youth at a relatively early age (late elementary/early middle) to teach, reteach, reteach the ‘rules for sex’ with them.

Despite huge efforts on the part of parents, at some point, families may have to interface with the justice system on behalf of their youth or family member who experiences an FASD…

If a person who may have an FASD condition is involved with the justice system, there will be a need to educate the various professionals involved such as: attorneys, judges, probation officers, social workers and more. It is possible that each of these persons has little knowledge about FASD.

It is useful to approach this task with the assumption you are dealing with basically a good person whose job involves serving others, but who is faced with strong limits on the available time for each situation or client. Presenting them with credible information on FASD without wasted time is the best method.

Build a packet of any evaluations the justice-involved person has had. If the individual doesn’t have an evaluation for FASD, try to obtain one. Expect delays before a program can see you, so start right away.

National Council of Juvenile and Family Court Judges, Fetal Alcohol Spectrum Disorders: Implications for Juvenile and Family Court Judges (2015) doc. The publication is recent and from a very credible source for the justice system. It has great information on FASD, how it plays out in the justice system, and the strong need to respond appropriately. You will need a copy for your attorney and more copies for opposing attorney/judge/probation officer/social worker, etc.

For additional excellent resources go to FASD Basics-Resource and Research: Legal on this website.