Our Daughter Has Fetal Alcohol Spectrum Disorder — Here’s What It’s Like
By Paula Schuck
PHOTO © mindytingson/Twenty20
Feb 26, 2020
My youngest daughter has FASD (fetal alcohol spectrum disorder). It's a whole-body developmental disability sustained as a result of prenatal exposure to alcohol.
For years since we adopted her, we’ve been her translators. She wasn’t technically from a different country, and she had all kinds of words she could use, but for all intents and purposes she spoke a completely different language.
Understanding FASD, for us, has been like learning a new language.
FASD is one of the most common causes of developmental disabilities in North America, and is found in all cultures and levels of society. In fact, the latest research from CANFASD indicates the prevalence of FASD in Canada is 4 per cent, making it 2.5 times more common than autism and 28 times more common than Down syndrome.
People with this diagnosis each have unique challenges and strengths — FASD comes with as many as 400 physical and psychological symptoms. But this spectrum disorder is often an invisible disability, and it is preventable if you don’t drink alcohol while pregnant.
Read two teen sisters' firsthand accounts of living with FASD from CBC Kids News.
Sometimes FASD symptoms don’t show up until parents or teachers see learning gaps or behaviour at school. It might look like an inability to focus, aggression, hyperactivity. It might be issues with working memory, planning or boundaries. It might be emotional dysregulation and executive functioning deficits. Slower processing speeds, lateness and poor time management are also all common in this group.
"We adopted our daughter at about five months old. Prior to that, she was considered medically fragile and in a foster home."
People with FASD often exhibit dysmaturity. They can be 15 chronologically, but their developmental age is much younger. And this might fluctuate, even in the course of 24 hours. For instance, my daughter often seems like an average teen at school, but before her medicine in the morning, she acts much younger. There are days when she functions and acts 10 years old, or younger.
We adopted our daughter at about five months old. Prior to that, she was considered medically fragile and in a foster home.
She developed typically and hit many milestones, but still, curious behaviours surfaced. Her sleep pattern was chaos, she screamed often, was seemingly inconsolable and didn’t really like to be held. For a period of time when she was about two, she didn’t sleep more than two hours a night. That went on for over a year. Her sensory issues were significant. She startled at odd noises and she was hypervigilant. She was hyperactive. She scratched at her skin until it was bleeding. Eventually, we realized she was reacting to fragrance in laundry detergent. Those were just a few of the initial things we noticed.
When she started moving, she was always on the go, in a frantic flurry of activity, but without any normal trepidation or fear. Her fearlessness over the years has sometimes been part of her charm and other times it's also been terrifying as a parent.
"It took a team of support staff sometimes hours to get her into class."
At around three, we began adding more safety devices to our home because she had zero impulse control and would race out the front door or charge after strangers. I remember many scary minutes spent running after her when she bolted out of the blue and ran away. She often took off when overwhelmed, no matter where she was at the time. Once, at four or five years old, she ditched us at Disney, on my watch no less. My oldest girl was with my husband riding Pirates of the Caribbean and when they came back, we found her in a huge crowd of adults.
When it came to school, at the start it was a rough go, no matter how many transition meetings we had. It took a team of support staff sometimes hours to get her into class. Separation anxiety was a big factor and at school she lashed out or ran away overwhelmed. But she loved physical education and excelled at all sports.
Who should know about your child's diagnosis? Learn how to make that decision here.
Eventually, over time, we learned she had FASD, after I sought out more social history about her biological parents and grandparents from Children’s Aid. We found a doctor at a well-known children’s hospital in Ontario to help us make sense of symptoms. He made a few recommendations and clearly documented her symptoms, gave her a diagnosis and sent us on our way. There was no followup.
From our experience, here’s how we parent a teen with FASD on a daily basis — what works, what doesn’t and how we have found some limited supports recently.
- Connecting with other parents who are raising kids and youth with the same disability is vital. But also remember that just as you, the caregiver, need support and someone who gets it, so do they. Find another child with FASD at a similar age and stage they can connect with in a positive way.
- Providing a lot of opportunities for physical activity to channel the hyperactive side. She is super athletic, so giving our daughter multiple chances to do sports is a positive thing.
- Modifying the environment. Early on, we learned to keep her bedroom clear of clutter. That worked when she was a child, but as a teen clutter creeps in fast and we are all losing that battle. A white noise machine in the bedroom at night and blackout blinds have helped.
- Having a plan B. When my daughter was younger, we would often change our expectations. There were days when it was clear that even when my mother-in-law was at her sickest with cancer, my daughter couldn’t handle the drive an hour-and-a-half down the highway. So, we had to divide and conquer. One of us would stay home with her and the other would go to the hospital.
- Stacking the deck in her favour, where possible. At school, that might be her getting a group assignment where the other members of the group are specifically chosen to be supportive and tolerant. Or it could be a teacher who plays to her strength in drama and accepts a final assignment that is done verbally instead of on paper.
- Repetition. People with FASD have memory gaps and deficits. She forgets facts and skills she’s learned sometimes. It’s easy to fall into a challenging pattern where you wonder how on earth they forgot what they knew yesterday.
- Not taking it personally. Harder than it sounds. We are all working on this. When they act out or yell at you, it feels personal. But often it's her being overwhelmed, tired or hungry.
- Ignoring the small stuff. What works with a neurotypical child often doesn’t work with our kids, so sometimes we have to let it go. Is it life threatening, morally threatening or hurting someone? No? Then proceed as usual.
- Fighting the urge to correct. Best example I have of this is when my daughter was really young, she’d argue everything out of a need for control. She could argue for hours that the sky was green and the grass was blue. Sometimes, I tell her sister it has to be OK just knowing that you are right. You may never convince a kid with FASD that they are wrong and trying to can cause everyone more frustration.
These days, I see some progress both at home and in the FASD advocacy movement.
My daughter is learning to be her own translator and growing some advocacy skills, at least enough to occasionally be able to tell teachers when something is not working (using appropriate words instead of anger). And when my she was very small, I used to travel to Alberta and B.C. to uncover any shred of information possible, moving mountains to learn how to parent her. But this month, I received three different educational flyers for FASD speakers or events coming to London, Ontario.
I am clinging to the hope that this means more people will soon speak her language.
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