Empathy is an important part of preventing Fetal Alcohol Spectrum Disorders. Illuminate Colorado reached out through our networks of families impacted by substance use to get more perspective to increase understanding and support for birth mothers and to strengthen recovery for women who drank during their pregnancies as well as to support their families.
Julene is a mother in recovery from her alcohol addiction for 22 years with a full time job as a special education teacher, plus raising her two children with FASD in their teens and early twenties. She regularly carves out time in her busy teaching schedule to talk with professionals about her family’s experiences to help strengthen support for other families.
One Mother Raising Two Children with FASD Shares Her Perspective
While Julene is open about the fact that she drank routinely during her two pregnancies in small groups, to protect her and her children’s anonymity, we decided together that the best way to share their story was in a written Q & A below.
Q. Why is it important to you to share your experiences as a birth mother of two children with FASD?
Addiction is a terrible cycle of events which can control one’s mind, body and spirit. If I can help one child, one mother, one family survive and thrive while living with an FASD, then I have met my purpose on this earth. My alcoholism has had life long term consequences for my biological children. I do not wear my addiction as an excuse, but rather an opportunity to demonstrate authentic living while learning from past misguided judgement.
Q. Describe the daily stresses of life today and how you are managing everything on your plate right now.
I have had to grieve the loss of the healthy child. I have had to reframe my expectations to meet the current reality. The grief comes in waves, as my son and I meet each of the milestones in life. Living life with an individual with an FASD takes love, patience, tolerance, and an open mind. In the meantime, I still have to address my own addiction tendencies, even though I have 22 years of sobriety. I have to take care of myself or else I have nothing to give my children. I go to 12 step meetings, I workout, I volunteer my time to give to others. Getting out of myself is often the best way to travel through my life’s challenges. I have friends that I can be honest with, and I have a therapist to guide my life. Balancing being a mother and a teacher means I need to have good time management.
Q. Thinking back to the earlier years of your life, during your pregnancies, is there anything more that others could have done differently?
When I first got onto birth control at age 20, that would have been the time for an OB/GYN to have a serious conversation about the value of mental health as a woman of child bearing age. Instead, I was never asked what my personal choices regarding drinking alcohol were until my first pregnancy at age 27. That is 7 years of lost time for an intervention. I had just been raped on my college campus and it was quite clear that I was underweight and had an eating disorder. Putting a bandaid on my mental health by providing me with contraception was a good start, but not the final solution to an intervention
Q. Thinking about the panel discussions you’ve been a part of in the past, what is one thing that people are surprised to learn?
Perhaps something that might surprise folks is that I came from a family of money and with both parents well educated. I graduated from a private University and I was married to a man with a PhD in mathematics. Our social economic status was good and the pregnancies were planned. The only thing that was not anticipated was that I would not be able to stop drinking while I was pregnant.
Q. What are some ways others support you in your recovery today? How has the support you needed changed throughout your time in recovery?
My ability to get and stay sober has been through in-patient treatment for my alcoholism, 12 step programs, and medication to support my depression and anxiety. I still attend 12 step meetings 5 days a week, and take prescribed medication for my long term mental health needs. I have a therapist and a sponsor.
Q. What is life like for your children and what do you hope the future holds for them? What support do they need to thrive into adulthood?
My first born was lucky that her outcomes have been very positive. Although she was prenatally exposed to alcohol, my alcoholism was not as severe as later in my disease. She grew up in an educationally rich household with a family who could meet and address her every need. She has graduated from a private University and is employed as a computer software engineer.
My second pregnancy was impacted at a significantly greater level of prenatal exposure to alcohol. My son, pictured here, has Fetal Alcohol Syndrome, and has significant cognitive and neurological deficits. He is 22 years old and I am both his legal guardian and primary caregiver. He lives with me, and he keeps me grounded on my purpose. My son requires constant companionship and assistance with daily functioning and executive functioning. My hopes for him include gaining job skills and the ability to volunteer in the community. I want him to find joy in the abundance of love he gives to others, and find a partner who will love him as he is.
You Can Help
Stigma associated with substance use of any kind is real and parent shaming is not only ineffective if your purpose is to strengthen families, it is hurtful and wrong. Please join us in sharing positive support this month by thanking this mother for her openness during #FASDMonth. #ThankYou
Our organization also leads the FASD Identification Work Group, comprised of family members and professionals meeting monthly to improve access and quality of resources for families impacted by FASD across the state. Throughout this year the work group held a series of FASD roadshow events to raise awareness of FASDs and solicit feedback on priority areas for change in Colorado. Look for a release of recommendations for strengthening families to prevent FASD from parents and caregivers impacted by FASD this week.
These recommendations from parents and caregivers impacted by FASD, as well as professionals dedicating their careers to children and families, will hopefully light the way for our work for years to come. Because even though FASDs are present in a child’s life forever, there ARE approaches that can help support individuals and families to thrive into adulthood.
If your family has been impacted by substance use and you would like to get more involved and share your experiences to strengthen families in Colorado, like Julene, please contact us.
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