Connecting with Others
In addition to support groups listed in another section of this website, there are other ways that caregivers of those with an FASD can connect. It is important to find the kind of connection that works for you and that may be a combination of what is available. Those with these connections find hope, strength, strategies, and support that often are not available from those who do not walk the path caregivers are taking with their loved ones.
There is an annual outstanding conference regarding FASD in Vancouver, British Columbia. This conference alternates between the International Research Conference on Adolescents and Adults with FASD (even years) and the International Research Conference on FASD. The Adolescents and Adults Conference in Vancouver is not only rich in information about FASD, but also provides an outstanding opportunity to network with other caregivers over a period of days, which often results in ongoing support from others who “get it” via email and phone. Adolescents and adults attend the Vancouver conference (no fee as of 2018) and have a separate track of programs for those with an FASD; they also participate, if they so desire, in the closing ceremony.
There are other conferences focusing on FASD in the United States. As those occur in North Carolina, our newsletter will highlight these. Also, here are two scholarships available to residents of North Carolina that may cover some of the expenses.
- Bonnie Schell Scholarship Information
Connecting with others electronically
Facebook pages specific to FASD abound. Some are for caregivers only, some for those with an FASD only, others for caregivers of certain ages, etc. Explore the options through the search function on Facebook.
- One FB page was started by adults with an FASD: “Flying with Broken Wings.”
- Another, “Shifting the Paradigm” focuses on the neuro-behavioral approach to FASD, which is highly recommended in living with and helping a person with an FASD.
- FASD Caregiver Success Support Group with Jeff Noble is very popular. He also offers webinars and speaks around the US.
- Fetal Alcohol Resource Program post information that we can use every day.
The Virtual Support Group through A Renewed Mind Double ARC Center for FASD Services is ideal if you do not have a support group in your area or if you want another dose of support on a monthly basis. This offering is one of many services offered by this nationally recognized leader in FASD which has been in existence over 25 years.
Craig Peterson writes an insightful blog entitled “Adopting Faith: A Father’s Unconditional Love”
Email List Servs
- FASlink (for individuals, parents, professionals who deal with FASD) : http://www.faslink.org/faslink.htm
Other Resources for Parents
Sex and FASD
- Fetal Alcohol and the Rule for Sex
- Tips: Dating and Sexuality
- Tip Sheet: Relationships and Sexuality
- Sexual Education Resources
- Elevatus Training
- FASD: Trying Differently Rather than Harder (Diane Malbin)
- Moment to Moment: Perspectives on FASD in Adolescents (ed. Ira J.Chasnoff)
- Guided Growth:Educational Interventions for Children with Fetal Alcohol Spectrum Disorders
- Our FAScinating Journey (Jodee Kulp)
- The Best I Can Be (Liz Kulp)
- Braided Cord (Liz Kulp and my 12 strand crew)
- Fantastic Antoine Grows Up (ed. Judith Kleinfeld)
Selected Resources to Utilize with Children with FASD
- Fetal Alcohol Spectrum Disorder (Ellen Rodger and Rosie Gowsell) (recommended for teens)
Please help us spread the word by sending our brochure to practitioners and parents or printing and distributing in your area. We appreciate your help in getting the word out.
The adoption coordinator walked through the Kirov orphanage drawing room doors with a 7 pound, 4 ounce swaddled baby girl who was just over 4 months old. Alexandra, as she had been named by her biological mother, would become the daughter that “grew in my heart, not in my tummy.” Thus we began, in August 1994, an unbelievable journey of love, bewilderment, delight, concern, happiness, frustration….the gamut of emotions.
I knew that I should be concerned about fetal alcohol exposure; after all, we were in Russia, a country with a high alcoholism rate and a place that seemed to have a vodka kiosk on every corner. But she did not have the facial anomalies that were said to be the trademark of a child so exposed. What was most evident for many, many years was that due to her prematurity (born a full 3 months early at 2.4 pounds) her developmental delays needed to be addressed aggressively and relentlessly, but even then it seemed that she did not “catch up.” The words of our family practitioner kept resonating in my head: “I have delivered lots of preemies; they catch up by the time they are 2.” What was wrong? He said she would catch up.
The alphabet soup diagnoses and a vocabulary new to me came along with a host of specialists: cardiologist; child development specialist; functional vision specialist; gastroenterologist (2); nutritionist; geneticist; neurologists(4); ophthalmologist; psychiatrists (4); psychologist (2); neuropsychologist; occupational therapists; movement therapists; speech therapists; social workers; adaptive physical education teachers; special ed teachers. To each one I said: I believe she has Fetal Alcohol. They either shrugged their shoulders or looked at me like they did not know what I was talking about. They didn’t!
Managing the appointments, services, and meetings was overwhelming, to say nothing of the feelings that went along with each. I felt like I was explaining something that no one heard. I was looking for an answer that no one seemed to have. We were all treating Sasha like a Gordian knot: trying to unravel it solely by manipulating it. It was frustrating…one step forward, 10 in place, and 1.5 backwards. I always had this gut reaction that we weren’t “quite getting it,” but the recognition of that reaction was hard to verbalize. I knew it, but didn’t really know what to do with the feeling. I got frustrated with different practitioners. I would recommend to teachers ways to help her learn, but I didn’t know why I was saying what I was saying. I kept thinking I could come up with the suggestions first because I knew her best because I was her mother, and secondly, the ideas came from my knowledge as a psychologist. Other times, I understood what was being tried wouldn’t work, but I didn’t know why. But the reality was I wasn’t getting it either.
With the advent of Google, I found a diagnostic clinic approximately eight miles from the major medical specialists she had seen. She was diagnosed with an FASD at age 10 ½ . Then I attended Diane Malbin’s training regarding the neurobehavioral approach. This three day intensive training changed the trajectory of her life. Sasha had brain damage: we needed to change the environment not change her. It sounds so simple that I often want to say “duh.” But it is easier said than done, even now that I can verbalize it. It’s hard to do because of who I am and what I have learned about what “works,” but doesn’t work for my daughter. For example: 1) Slow down….her processing is slow, so give her more time to respond. I am a fast paced person: walk fast, talk fast, process fast, react fast. It works for me but none of this works for her; 2) Fewer words are better….only about 30% of the words she hears are processed. But like most people, if someone doesn’t get something, I explain it more, over explain it. I feel like I am always retraining myself. I can’t just be who I am, I have to think: slow down; wait; use relevant words only. Over the years, before I really “got it,” I would make changes in the environment, but it was so hard to do. And the pace of life made it hard to make those changes part of the fabric of our lives. And it wasn’t necessarily successful for whatever amount of time we were able to keep the change in place, adding to the change’s demise.
With the specialized attention, she thrived, yet it became undeniable that many issues were not resolved; she does, after all, have brain damage. But that does not stop her. She has a spirit about her these days that is heartwarming. But we needed to create the environment for her to shine, to be who she is. After many years of hard work on her part and mine, and others supporting us, she is happy and fulfilling her dream of being more independent from me and doing activities and work she loves to do. She has friends. She has fun. She IS fun! And loving.
Hard work? Yes! Confusing? Yes! Frustrating? Yes!
But just think of what it is like her inside her head....my feelings to the nth degree. Amazingly, however, she gives more than she receives.
What a gift to my life.
FASD Toolkit (American Academy of Pediatrics)
For a comprehensive examination of aspects of FASD (description of FASD; identification, diagnosis, and referral; patient management; practice management; sample forms; training; resources), the Toolkit is an outstanding resource for all health care professionals and families.
Implementation Guide for Pediatric Primary Care Providers (American Academy of Pediatrics)
Those providing counseling for an individual with an FASD need to be aware that traditional interventions are not optimally effective since those strategies are based on executive functions, which are almost always impaired to some degree with exposure to alcohol in utero. A counselor needs a grounded understanding of FASD in order to work with the individual in therapy, as well as being flexible and adaptable to the individual's functioning level and needs. Relying exclusively on intelligence measures lends a distorted view of the individual's ability to operate in the world. Areas of adaptive functioning (the set of skills needed for daily living) must be evaluated and utilized to tailor treatment. Counseling is best utilized to focus on the development of life skills, social skills, self advocacy, and behavioral regulation.
It should be noted that DSM 5 now includes ND-PAE (neurodevelopmental disorder due to prenatal exposure to alcohol).
Excellent blog from a dad of several adults with FASD: Why talk therapy fails
TIP 58 is a treatment improvement protocol which addresses FASD. It was published by the Substance Abuse and Mental Health Services Administration (2014) and is available digitally by using the link provided. This manual includes many helpful suggestions about how to approach counseling, strategies, resources, and issues that may come up in the course of treatment, including suicidality. It is noted that a high percentage of individuals with an FASD have a co-occurring mental health diagnosis. Family involvement is strongly encouraged; and "family" should be seen as a broad term to include what might be considered the circle of support that the individual has. For those counselors who believe that DBT may be useful with certain individuals, Jodee Kulp has produced a set of modified DBT worksheets for person with neurodiversity, such as FASD.
As awareness of FASD grows, more and more articles and resources for mental health professionals have been published in the following journals:
Physical, occupational, and speech-language therapies
A growing body of literature exists that addresses working with individuals with an FASD through physical, occupational, and speech-language therapies exists; these scholarly articles also assist these practitioners identify individuals with potential exposure to alcohol in utero.
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