Get informed, get support, and take it day to day.
These three strategies separate the FASD families that don’t make it from the ones who do, according to a 2016 study that examined the practices of eighty-four parents and caregivers who are raising a child with FASD. A team of Canadian researchers asked the question, “How have families adapted?” Their findings give us a blueprint for going forward.
After just a year with our son, I knew I was not thriving. In fact, I was barely surviving. I was baffled by him, and it felt awful. I couldn’t get over the fact that he looked away when I fed him, and that he screamed whenever I changed his diaper, as if I were hurting him. But I really couldn’t get over the fact that when I put my pinkie in his palm, he wouldn’t react to it. Every other baby I knew would grasp at my pinkie when I did that. My daughter held on for dear life. But my son acted like he didn’t feel it.
It felt like he just wasn’t into me as his mom. I took it personally. I thought he missed his birth mom. I was becoming convinced that our relationship was doomed.
But I am also a competitive athlete, and couldn’t shake the idea that some families seemed to do just fine with an FASD child while others, like mine, were not. I knew I wasn’t done trying, but I just wasn’t sure what to do next.
Thankfully, a team of researchers asked the same question, and what they found was simple but effective.
First, get informed and share that information with your child’s teachers and professionals.
Read about it, attend conferences, go to workshops and talk to the experts. Parents reported that doing so enabled them to understand their child’s behavior better, which led to altered parenting strategies, which in turn led to better behavior. It also enabled them to advocate for their child more successfully.
Second, find good social and professional support.
One cannot underestimate the value of a friend who “gets it.” Because this isn’t always possible, look around for FASD support groups and FASD experts who can work with your family. (Our family thrived once we got connected with an FASD expert in our insurance network.) It is also helpful to have friends and family who can provide respite care, as the parents can easily burn out.
Third, take it day to day.
Routine, consistency and repetition will help the situation, but try to accept that there are some days where it won’t be enough. “The only consistency is the inconsistency” our practitioner told us about eight dozen times. Not only that, but the lessons learned on a Monday might not have made it to Tuesday. Families that accepted this feature of the condition were more successful than those who fought it.
Finally, the researchers noted that a new worldview was helpful.
Essentially, this means seeing the gift in it, rather than just the loss. And I know, I know –this technically takes my list to four! But I have never been able to just decide to change my worldview, so it felt like an outcome, more than a choice. In my experience, my worldview can only change when the other strategies are working, as it can be hard to force myself to suddenly feel grateful for the very thing that has kept me up at night and made me feel insane.
Ultimately, these habits coincided with an improved outlook, one that transformed the FASD from tragedy to gift, and life from chaotic mess to adventurous.
I myself have found that seeking information and support was far easier than accepting the inconsistency of the disorder. I still find it relentlessly painful when a week of great days ends with a day when he acts like I am a stranger to him and acts like everyone is against him. It is hard to feel “grateful for the adventure” in those moments. But I find that if I go back to the strategies that do work, and I pour myself a glass of wine and phone a friend, that it’s a little easier to stop taking it personally.
Coons, Kelly D., et al. “Adaptation in Families Raising Children with Fetal Alcohol Spectrum Disorder. Part I: What Has Helped.” Journal of Intellectual & Developmental Disability, vol. 41, no. 2, June 2016, pp. 150-165. EBSCOhost, doi:10.3109/13668250.2016.1156659.