On FASD Day, I’d like to share an important lesson I continue to learn as a special needs parent.
FASD Day is observed annually on September 9 and has grown into a month-long event: FASD Month in September.
FASD stands for fetal alcohol spectrum disorder, a lifelong disability that affects the brain and body of people exposed to alcohol in the womb.
Our son T, now 6 whom we adopted at 14 months old, has confirmed prenatal alcohol exposure and currently has a prognosis of at-risk FASD.
He has yet to receive a formal diagnosis, when he’s a bit older, but we can see tell-tale signs manifested through behaviour challenges such as hyperactivity, emotional disregulation, and difficulty with focus and transitions.
Longtime readers of my blog know that T is a bright, funny, caring, determined and curious kid with a lot of potential – but he also faces day-to-day challenges that neurotypical kids often don’t.
We’ve been blessed with an amazing summer. Interestingly, September 9 is also the first day of school for T.
The coincidence with FASD Day feels somewhat symbolic. As he enters Grade 1, I am filled with a mixture of hope, optimism and anxiety.
It is a huge leap from kindergarten with a more formal learning setting and expectations. I worry how the new routines will clash with his challenges, along with gaps that may have resulted with virtual learning.
I’m choosing to stay positive. We have good supports in place and I have to remind myself about taking it one day at a time.
What’s contributing to my anxieties is the last few weeks, since the return from our wonderful roadtrip, we’ve had challenges in the mornings and evenings with routines that should be straightforward by now.
Getting him ready in the morning for daycare – getting teeth brushed, dressed – were challenging, with tantrums, battles and meltdowns. Similar situations in the evening with getting him to bed.
Even the hubby, who is normally way more patient and calm than me, lost his cool a few times.
And of course, when either one of us lose it, T enters into his fight and flight mode, and we’ve officially entered into a meltdown situation.
These explosive moments don’t feel good as a parent. You feel like you’ve let your child down and you feel guilty about how you could’ve handled the situation better.
Two years ago, I bought and read a book called “Trying Differently Rather Than Harder” by Diana Malbin.
It is a book written in concise plain language for caregivers of individuals with FASD and is considered a seminal text of wisdom. I encourage all parents on similar journeys to pick it up.
I won’t pretend to be an expert but it did teach me to reframe how I view T’s invisible disability.
First, it is to recognize that it is brain not behaviour. This is such a hard one to internalize, because we do not see the alcohol-based brain injury, we only see the behaviour.
Second, parents are encouraged to reframe a child’s difficult behaviours as “a child won’t” to “a child can’t.” I’m not sure I completely agree with this. So I like to reframe this for myself as “a child can’t… yet.”
Third, when we start viewing a child’s challenges as they are experiencing a struggle or difficulty rather than they are misbehaving, then we can reframe our response more positively as a child needs accommodation and support rather than punishment and discipline.
I know what you’re thinking. I’ve thought it too: these are such common sense and obvious advice. Let me add: it’s so obvious… in writing, that is.
Applying them is an entirely other beast. I know, because I speak from personal experience of wanting to do better and to try differently rather than harder.
But there are days when logic and determination go out the window, because we’re all human, and we often react with emotion rather than logic.
But T is my inspiration and T deserves his parents to truly try differently rather than harder.
Every day is a new opportunity to do better.
I recently put a renewed focus on my physical fitness routine. It’s been a month in and I’m feeling great and recharged.
I reflected to myself that it wasn’t easy at first, and there are evenings when I really don’t feel like driving to the gym to do 30 minutes of cardio, but I have to put in the work.
In a way, it’s like parenting. Trying differently requires you to build a new set of muscles to flex and to do so, you gotta put in the effort.
Earlier this week, determined to break the cycle of tantrum-filled mornings, I decided to try something different.
The breaking point for T is when we usually transition from getting him off the dining room table straight to the bathroom for teeth brushing.
I told T we were going to run around and play chase for 5 minutes. He loves being chased.
And so we did. He was laughing and smiling the whole time.
Then when 5 minutes ended, he went straight up to the bathroom with me – zero fuss and then afterwards, dressed himself in record time.
We repeated a similar approach during the evening, in between his tablet time and bath time, to positive results.
I certainly didn’t feel like I expended that much more effort by running around with him. It certainly felt far less taxing than losing my patience or riding out a tantrum or meltdown.
So yes, trying differently rather than harder. I love this phrase. It’s gonna be a tagline for me.
I’m gonna stumble with this repeatedly in my parenting life, but I’m sure gonna keep trying. Because it sure is easier to try differently rather than harder.
PS. I’d like to share a terrific documentary called The FASD Project. It is a short but informative and important work that helps advocate and reduce the stigma around FASD. Worth a watch.