I was browsing Pinterest this morning looking for graphic inspiration to represent FASD (Fetal Alcohol Spectrum Disorder). I didn’t find anything that spoke to me, but it did lead me to the following chart, which shows what life may be like for an 18 year old with FASD.
FASD describes a range of lifelong disabilities resulting from prenatal alcohol exposure. When alcohol crosses the placenta the developing brain and body is altered. Ninety percent of children with FASD will have no visible traits. FASD is considered the leading cause of developmental and cognitive disabilities among children in Canada (Health Canada, 2006). It’s a physical, yet mostly invisible, disorder.
My daughter is one of these children. Outwardly she presents as a typical 15 year old. She loves music, clothes, boys and just wants to hang out with girlfriends. (Except she doesn’t have any friends). She has a low to average IQ – which means people assume she is capable of much more than she is. But once you get to know her, you will find that she is really younger than her age.
According to this chart, which appears in Diane Malbin’s book, Trying Differently Rather Than Harder, my daughter at 18 MAY have the comprehension and emotional maturity of a 6 year old, the social skills of a 7 year old, the money and time concepts of an 8 year old and the living skills of an 11 year old. Every person with FASD is different and this chart is a general guide based on studies – but I find it quite accurate for my daughter.
So when I wonder why I am so tired I remember that I’ve been raising a 4 – 8 year old for most of the last seven years … And that is unlikely to change for the next 10 years!
Did I know about all of this back in 2002 when I first started on this journey to adoption? No. One of the questions on the adoption form was – Would you rather adopt a child whose mother has consumed alcohol or crack cocaine while pregnant? I picked alcohol. Alcohol consumption and the related harm, while was known, was still in its infancy of knowledge in the medical community – never mind the general population. One of the social workers suggested I read some books about FASD. I couldn’t relate the child before me as one of the children in the books. I was wrong! It took a few years for the behaviours related to not appropriately accommodating her FASD to really present itself above the initial diagnosis of ADHD and ODD (many of the same behaviours cross-over).
Over time I will be sharing stories about our struggles, challenges, obstacles (as well as successes, great times, growth) but I will always come back to these four standards – or mantras – for supporting anyone with FASD. They can be used on anyone, but for my daughter they are critical. When something falls apart it can usually be traced to one of these supports not in place:
- Specificity – my daughter’s world is very specific, black and white and rule driven. She needs actual facts, few words, and directions in the precise order. In with this is her inability to generalize. She understands right from wrong but each instance is something different. She cannot apply a lesson learned one day in one situation to the next unless the exact same thing happens.
- Supervision – 24 hours a day / 7 days a week. She will always need what some refer to as an “external brain” – however as we move to first person language, simply put, she will need a person to support her with decision making and daily life. I am not with her all the time, but I make sure she is not by herself for very long. This year, she stayed home alone for 30 minutes, for the first time, without a panic attack. She will wander off and get distracted and this can put her in dangerous situations. She was brought home by the police a few weeks ago because she didn’t stay at school where her grandma was going to meet her after homework club. Instead of staying when she finished her work early, or calling, she wandered around town, got overwhelmed and thank goodness a store employee recognized her distress and called the police.
- Repetition – Short term memory problems mean over and over and over and over again. She may get it the first time and remember always. She may get it one day and not the next day. She may need it repeating 25, 50 or 100 times. She may never get it. She still does not know her multiplication tables – uses her fingers, paper or calculator. She is amazed when she asks me what 6 x 8 is and in a second I can tell her.
- Routine – Along with repetition, routine is so important. A structured day lowers anxiety, makes things predictable and makes her feel safe. And when the same thing happens, she will learn. Now we all know life is never predictable – but I have to make her life as predictable as possible. This is one reason I believe my daughter, like so many others, struggles at high school. Elementary school is very structured and routines are the norm. In high school it feels like a free for all, chaotic place.
Raising a child with FASD is exhausting. It is like having a child that never grows up. It is remembering that although they look, act and sound capable, they are not. It is remembering to stay calm, centred and focused. For most people 18 is the age when you graduate high school, get a job and move out or go to university. Looking at the developmental chart, my daughter may not be 18 developmentally at 18 years of age. And that’s okay. She will just take a little longer, and that is okay too.
It is no wonder I have come to understand why a mindful life is good for me. Appreciating every moment and being centred is so important for me to function as a strong advocate for my daughter. And sometimes I may only have a moment to breathe and find my centre, but sometimes that is enough to find my sacred breath.