I am a strong woman, from a long line of women who don’t back down or shy away from hard times. But one thing has the power to bring me to my knees and that is fear for my children’s tomorrows.
The day we received the diagnosis* for our youngest son, my picture of the future imploded. I nearly suffocated with the news. We were swimming, uncertain what came next. We dove into Google where I soon kept coming across that one horrible image that is shared everywhere comparing the brain of a ‘normal’ child with that of a child with FASD…maybe you’ve seen it – that image where the folds of the brain seem all flat and shriveled, like the future I saw slipping away. That photo knocked the wind out of me. The post-diagnosis period was hard. It took a long time to get to solid ground.
It took way too long for me to learn that photo no more represents my child’s brain than a flat and two-dimensional landscape represents my child’s future. (While people share it with good intentions, the photo is an extreme case – a research photo that should perhaps never have escaped medical journals. No one can live with a brain that looks like that. It does show the damage alcohol can do when it does its worst, but I will not share the image in case it sets someone back like it set me back at a time when I needed to see forward.)
Fear of the future. It’s always there. We can put on a game face and we can meet the challenges head on. But in a world where even doctors refuse to diagnose and support people who face this life with brain damage due to prenatal alcohol exposure, this journey deflates even the most determined of us all.
It’s pretty darn hard to get up the gumption again and again to push for support and services when those pushing back have degrees dripping off their walls. The internal scream just builds and builds until my head is reverberating with the thought – this is so unfair! This is a medical issue. My son has Fetal Alcohol Syndrome, the leading cause of non-genetic intellectual disability in the Western world as noted in a report by the British Medical Association. It is one of the Fetal Alcohol Spectrum Disorders (FASD). FASD is real – it isn’t nothing, it’s not just ‘a label’ to excuse ‘bad parenting’ – it’s a lifelong brain-based disability known to have more than 400 co-occurring conditions. It leads to devastating secondary disabilities if the underlying needs aren’t met. And yet parents, carers and guardians are often asked time and again why they want a diagnosis by people who should know better – as if the diagnosis is some kind of optional add-on rather than central understanding needed for people to navigate their lives.
Why isn’t the medical field out there ahead on this, pushing prevention and early detection rather than making family after family feel inept, inadequate and undeserving of diagnosis, treatment and support? That’s a serious question, one I am still waiting for someone to answer for me with anything that doesn’t smack of stigma-laden prejudice, self-centered justification of a pub culture that can’t look itself in the eye, or a burdened bureaucracy prepared to sacrifice some of its most vulnerable in the name of saving some small bit of money now despite knowing it will cost more in the long-run at the expense of too many promising young lives.
Fear of the future? Heck yeah, when you are staring out at this world knowing at some point in the natural order of things you will die and your child will live on. Knowing he will live on in a world that doesn’t care to understand him or his disability, a world that seems more likely than not to throw him in jail rather than support him or make accommodations for his needs. Fear? Darn right I am fearful. I see the shadow in people’s eyes, as this sweet young boy turning toward adolescence is starting to lose his balance, getting swamped by the hormonal storms coming his way, not fitting in the boxes society has lined up for ‘good boys.’ Fear? Oh yes. I fear. I hear too many stories, feel the anguish of too many lost young adults and families when these young souls get caught up in the chaos of young adulthood, the challenges of being emotionally and socially unready in a world that wants them to grow up faster than they are able.
Frightened and fearful. Yes, that is me. More times than I may seem. But I refuse, downright refuse to let that fear stop me from doing everything I possibly can to create the best possible chance for my son to have the future he deserves. I will stare down anyone who gives him ‘the look.’ I will drown any professional who doubts his right to services with enough paper and proof to convince them to either deal with his FASD or refer him forward. If someone tells me he is ‘incapable of learning’ as did one educational psychologist early on (pre-diagnosis), that person sure as heck will never be within a mile of my son again. I will fight against this fear. And encourage any others I can to hold tough, stand tall, push forward. Because together, collectively, we can change this.
We are afraid of the future, yes, but we focus that fear to make us more powerful and stronger advocates, determined to learn what we can to create the best possible outcome for our son and the other children with FASD who deserves a chance.
But let’s be honest. It is lonely and scary to stand where we are on the near edge of the adolescent years. There is a way to bridge the wild waters of the coming teenage years. Even as I know the fall down can be hard and brutal, I know there is a way to make it across. I have the honour and privilege to know adults with FASD and their families who have made it to the other side. They are good people living good lives – contributing to society in all kinds of ways. They are loved and loving. Their lives may not be easy but they are profound. They have truths to tell and songs to sing. No, I can’t – I won’t – let the fear paralyse me now, or we will stumble, fall, slide. I will not get caught up in the trap of negativity.
I keep eyes forward.
I walk side by side with our son. Come what may.
He struggles against me, yearns for an independence he cannot yet handle.
Every step scares the heck out of me.
I hope (and yes, for him I even pray to whoever might be listening) that this walk across these teenage years will be gentle.
If he is in trouble, may he get help not judgement, compassion not intolerance.
If he strays into dangerous waters, may someone offer him a lifeline and not an anchor.
If he loses his way, finds himself drifting or spinning out of control, may someone ground him rather than send him further away from me.
May he not get tangled up in something that can drag him down.
If he calls for help but in a language others can’t hear, may someone see his shining soul and recognise his innocence and bring him home.
This boy had to fight for existence without love for the first 16 months of his life. The world has already proven once to him how cruel it can be – it left him speechless, untrusting, hungry for something more.
Please, let me suppress this fear long enough to get him to solid ground.
Help me help him.
[*If you are new to a diagnosis – please see this resource: Information for parents/carers following a diagnosis of FASD by Dr. Cassie Hunt, Highly Specialist Clinical Psychologist. You don’t need to flounder as much as we did.]