T is wearing red shoes to day camp today in honour of FASD Awareness Day.
Commemorated annually on September 9, to symbolize the ninth month of pregnancy, this day serves to raise awareness about Fetal Alcohol Spectrum Disorder, specifically about the plights of drinking during pregnancy and about the struggles of individuals with FASD.
Wearing red shoes on this day was an idea began by RJ Formanek, an individual with FASD, to help start conversations about FASD.
Our five-year-old has a prognosis of at-risk FASD, because his birth mother has stated that she drank during the first three months of pregnancy, when she was unaware that she was pregnant.
FASD is a spectrum and the effect on each individual will differ.
For T, and for us as his parents, the biggest challenge to date has been around behaviour.
He struggles with hyperactivity, difficulty with focusing on a task, emotional regulation and impulsivity.
These are foundational skills that can influence how he experiences the world – such as school and friendships in the immediate future.
FASD is a brain-based injury and is a little understood condition. It is an invisible disability and it often leads to people thinking children like T are badly behaved – when in fact, the behaviours are symptoms of his condition.
One of the most painful moments in our parenting journey to date was when T’s Montesorri pre-school program booted him out after a parent complained anonymously – cowardly, if you ask me – to the owners about T.
While FASD is a lifetime condition, it does not have to be a life sentence.
With the right supports, individuals with FASD can have positive lives and thrive.
I will say this loud and proud, our T is bright, caring, tenacious, funny, curious, creative, and a storyteller.
He has benefited tremendously from early intervention services – such as speech therapy (the kid won’t shut up these days), occupational therapy and behaviour therapy.
One of the most important lessons I’ve learned in this humbling parenting journey is that you don’t need to lower your expectations but rather you need to adjust your expectations and to accommodate your child’s needs to maximize their success.
T does not have an FASD diagnosis, because his developmental pediatrician wants to wait until he’s older because he has been doing well at his check ins.
He did recently get a diagnosis of ADHD and we started him on medication this summer.
With that said, the hubby and I are operating under the worst case scenario – and assuming he has this diagnosis based on exhibited behaviors – as it’s allowing us to give him the scaffolding he needs at home and at school.
Advocacy, such as FASD Awareness Day, are so important to helping spread the word to reduce stigma.
In Canada, it is estimated that 4% of the population are affected by FASD. That’s over 1.5 million people. And yet, so little awareness and understanding about this condition exist.
FASD has long held a negative stigma. Labels are so wrong, but it is how society tends to operate and function – myself included until parenting changed my view of what special needs means.
T doesn’t know about his condition. But I know and I can tell that he is aware of his actions and their effect. He gets upset, for instance, when a kid doesn’t want to play with him at the park because of his rowdy behaviour.
Talking about his challenges, whether as a diagnosis or in the context of pre-natal alcohol exposure, will be a conversation for when he is older. It will be difficult.
But honesty is the best policy. T is a bright and determined kid. I am hopeful that he will embrace it and channel it into something positive and to build his resilience.
I’ve written quite openly about the highs and lows of parenting a child with great potential and challenging needs.
It is the most rewarding thing I have ever done in my life – and the most challenging thing.
T pushes the hubby and I like no other thing in our lives have ever done before and on some days, I really just want to scream at how hard raising this kid is.
But it all comes back to us in spades – through love, exhilaration and joy.
And that is the message I want to share on FASD Awareness Day: there is so much love in and from children like T. That is what I choose to focus on as we look and move forward with cautious optimism and pragmatic positivity.