We began this adoption journey much like the first two. Except, this time we were prepared, so I thought. We had all the right books and completed all the training, including TBRI with Karyn Purvis and Trauma Competent Care with Jayne Schooler. I would remember that there is meaning behind behavior. This time would be different. I would not call my husband at work and beg him to come home because her meltdown led to my meltdown!
To my dismay, four months into our new family, I knew something was very wrong. Thankfully, attachment and bonding seemed to be flourishing, but there were times when she was inconsolable. Screaming, throwing, and self-harming would throw her into exhaustion. Perhaps she missed interacting with 350 children every minute of every day. We thought enrolling her into public school and out of home education might be the key we were missing. It was not long, and I started dreading the cell phone vibrating. “Mrs. Schuiteman, this is Ms. Principal. Your daughter grabbed the teacher’s cell phone, chucked it down the hall, and has barricaded herself in the bathroom. Can you please come to school?” These calls became our new normal. In addition, she could not remember her classmates’ names and was failing to learn simple counting, even 1-10. There had to be something we were missing.
We knew her records from Eastern Europe revealed she had been prematurely born and extremely ill to an alcoholic mother. It was a fact that we glossed over because, subconsciously, we believed love (and previous training) could cover it. It was then that we began a two-year process with a group of specialists, the most important person being a pediatric geneticist, who would give us an official, documented diagnosis of Fetal Alcohol Syndrome. Thus, our journey began on becoming educated about FASD and learning how to parent a neurodivergent child.
What is FASD?
Fetal Alcohol Syndrome (FAS) is a medical diagnosis for physical and cognitive symptoms due to prenatal alcohol exposure. Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term of a broader diagnosis of people who have been affected by prenatal alcohol exposure but who may not have met full criteria for FAS. FASD is the leading cause of birth defects and developmental and learning disabilities worldwide. In the US, conservative figures state that one in twenty babies born are on the FASD spectrum. The prevalence of FASD in the foster care system is 17-19 times higher than the general population. It is reported that up to 80% of children with FASD do not stay with their birthparents due to their highly demanding needs. The life-expectancy of someone with FASD is 34 years old.
What are FASD characteristics?
Because FASD is a brain-based disease, it affects learning and retaining new information. This child may not remember what you said five minutes ago, and so the same question is repeated over and over. They get stuck or unusually fixated on a thought or action. When asked to complete three tasks, they will most likely remember only one. The frontal lobe of the brain is damaged which creates impulsivity and an inability to understand abstract concepts. It would be tempting to view this child as immature; however, a more accurate term is “dysmaturity.” This refers to developmental stage and not age. This child functions at a level younger that his/her chronological age which is why relationships with people younger are easier to navigate.
What are successful interventions?
Traditional parenting WILL NOT WORK. A paradigm shift is required. Things won’t change for our FASD child until we as caregivers shift our beliefs about their behavior. It’s not that they won’t; it’s that they can’t. It’s not that they don’t try; they are exhausted from trying.
Think brain! Move from a punishment-mindset to a support-mindset. What tools does your child need to be successful? Searching for support means you may need to subvertly and humbly educate your child’s teachers on FASD.
Acknowledge that poor short-term memory will require re-teaching or reminders. Be ok with giving gentle, one-word reminders often. Did I say “often?” The outcome will be better than having unmet expectations and suffering through a meltdown because the child’s executive functioning did not kick in.
Slow everything down. This includes verbal instructions and even your lifestyle. Don’t plan too many activities in one day. Less busy equals less confusion.
Be consistent and commit to a schedule which meets your child’s needs. If a rule is broken once, confusion enters the child’s mind, and a new rule has just been instituted.
Provide environmental adaptations. If children and adults with physical disabilities have glasses, crutches, and wheelchairs, why can’t children with FASD have adaptations too? Eliminate complexity in their lives whenever possible. Here are some examples:
~ Be mindful of transitions because transitions disrupt focus and activities.
~ Keep a routine for everything and every day.
~ They may not understand the physical effects of hunger and the need to sleep, so help them
monitor these needs.
~ Limit sensory overload. They are probably oversensitive to sensory stimuli.
Stay educated and be on a continual search for better understanding and new tools in order to parent well. God chose YOU to be this child’s parent; therefore, He will give you the wisdom and strength to persevere.
“Parents who have children with special needs also have special needs. They need to know more than the average parent. They need to do more than the average parent. They need more patience than the average parent … and so much more.” ~ from FASCETS
Resources:
www.fascets.org – Fetal Alcohol Spectrum Consultation Education and Training Services
www.justiceforohphansny.org/training/fasd
“FASD Hope” podcast with Becky Vecchione
“The Adoption & Foster Care Journey” podcast with Sandra Flach
“The FASD Success Show” podcast with Jeff Noble
Making Sense of the Madness written by Jeff Nobel & Tara Soucie
Trying Differently Rather Than Harder written by Diane Malbin