As we welcome a new year, time is on my mind.
Abstract. Controlling. Forceful. Time marches on, they say. They are not wrong.
But in our house, we are in a time warp. Due to damage done to our son’s brain wiring before he ever saw the beautiful sunlight or felt the touch of another person’s hand, our son is weighted down by time.
For those who love a young person with FASD it can be validating to learn more about the brain-based issues behind the acronyms and terms tossed about by medical professionals (when we are lucky enough to find practitioners who knows about FASD). One of the phrases that helped us better understand what is happening in our own household is the saying that ‘young people with FASD often function at a social or emotional level half their actual chronological age’. Skills levels can vary quite unevenly, as is shown by a thoughtful graphic by Jodee Kulp that is widely shared. This can be an eye-opener.
But lately I have been thinking about all the biases that stop us from truly absorbing what this all means, even as we ‘know’ it.
Today, all teenagers seem to have to grow up too fast.
In our town, one day they are in small primary school classrooms, led through their day by one teacher and side-by-side with friends they have known most of their lives. The next day they are thrust into a 1000-person school with a dozen teachers in as many classrooms, suddenly having to merge into the educational highway. FASD families worldwide know all too well the devastation that can happen when our precious ones crash up against that kind of unforgiving system.
In a world where teenagers are somehow expected to swim fast or move aside, kids who are on a different curve don’t have much of a chance. And while politicians and educators in the UK begin to figure out that we are sacrificing our kids’ mental health to GCSEs, there are those ‘other’ kids, like our children with FASD, who are spinning in the wind. The lucky ones are still holding on. Some might be in specialist schools, protected for a few more years. But too many are loose out there, flailing. Falling.
Because while we say a teen with FASD might only have the social or emotional capabilities of half their age, we are not really digesting what that means, not making the adjustments that necessitates. Every day in a thousand ways we parents are bashing up against that mismatch and what it means for their lives. We feel frustration at socks scattered on floors, dinners uneaten, doors unhinged, rude words that hit their target because they are said in a voice that is deeper now. But those are just the ‘obvious’ signs.
It means dealing with the disappointment of a 14-year old who waited patiently for Father Christmas, convinced a MacBook and iPad would appear because they make them at the North Pole where they don’t need to worry about money. It means helping him bathe and get dressed, to struggle over tooth-brushing and hair combing and all the sensory challenges they involve. It means Legos and marble runs that consume a room he cannot keep tidy on his own. It means playing silly games and understanding that when he starts to use baby talk or make animal sounds he is overtired or on the road to dysregulation. It means bumping into friends from his old mainstream school whose lives are completely different than his. It means having no sense yet of what relationships entail, no understanding of what half that new and very ripe vocabulary means, being unable to predict in advance the possible impact of saying the wrong thing to the wrong person.
Mostly it means stepping back from others’ expectations. From our own expectations.
Time after time, it means deflecting those ‘looks’ from some family members and friends who believe we are creating this mismatch between a body that has clearly gone through puberty and a mind that is still exploring the world as a much younger person might. It means shouldering past the ‘tut-tuts’ of those who believe he ‘needs to get on in the world’ and we shouldn’t ‘baby’ him.
What it really means is isolation.
For him and for us.
That’s the part that is really hard.
Because even the most well-intentioned and even some who love him sincerely don’t really get it, can’t really ‘get’ this different timeline and different reality.
The holidays are brutal with their twinkling lights obscuring fiendish booby-traps everywhere. We jump aboard traditions when we can. Otherwise, home it is. The same four walls that protect us from the whirlwinds that can unearth him, equally press in on us. We try to be okay with that, but let’s be honest. Sometimes, it’s not so easy to feel so ‘different’ – even as parents we find that hard, we feel alienated from the other parents. How must it feel for him?
So yes, I have been thinking a lot lately about how slowly time unwinds on this alternate clock. And what that means as I myself age.
I fear losing patience, even as I know the ‘facts.’
Most of all, I fear society losing patience.
From the outside he looks grown up. He’s not far off from 16, from 18 – when society flips from compassion (to the extent it exists) to something else. Something harsher.
Sure, we know ‘all kids need to go through the developmental stages at their own pace.’ This is a mantra we all have recited for our children, as we waited for those first words, those first steps, that first two-wheeled bike ride. Somehow, even then, we couldn’t help comparing.
Really and truly letting go of what is ‘expected’ is hard. It shakes you to your core. No matter how ‘with it’ you think you are, it’s still extremely hard to face down that disapproval that is often just around the corner when someone is marching to a different beat. People like sharing those videos of kids dancing to their own rhythm – but every time I see those videos making the rounds I think, ‘Yeah, but do they think it’s cute in daily life?”
Adults with FASD say things seem to start even out for them in the mid-to-late 20s. There have not been adequate studies done about this yet. But I fully trust the wisdom they are sharing. People think I am joking when I say I am just trying to get us through the next decade in one piece.
There is no guidepost for the teenage years. These years pound down on our sweet children at times turning them bitter. At times, leaving them feeling defeated, self-medicating, influenced by those pressures to ‘grow up’ long before they can begin to understand the impact of their choices.
And I fear being guided by fear.
I want to be strong enough to tell the world to ‘back away!’ To let my sweet son grow and learn and explore at his own pace, in his own way. To let him wear what he wants to wear, play with a doll if that is what he wants to do. Let him immerse himself in ‘Gelli Baff’ and to play with slime.
I want to be strong enough to encourage enough social spaces to include him, to not always leave him out because he cannot cope with what ‘is’ – but to build something new that he will enjoy too. To show others that it can be equally fun to do things in a different way. These spaces and opportunities are few and far between (especially hard to find for worn down parents who are swimming hard to keep their own heads above water). How many soft play areas allow 14-year olds?
And when does it change? It seems like it is going to get more difficult before it gets better. If I have a 14-year old that functions at the level of a 7-year old at times, soon I will have a 15-year old or 16-year old who is functioning in some ways at the level of a typical 8-year old. Maybe an 18-year old with some qualities of a 9-year old. The goal cannot be traditional independence at 18, no matter what The System thinks might be possible.
And yet, though I know this, I reject some of the implications. This mismatch with age and maturity is still not yet the full picture.
It forgets the fact that he is unique. And that in that uniqueness is splendour.
Despite the rule of thumb about social/emotional age versus chronological age, he is NOT a 7-year old. He is a mix. A wonderful and original mix. And that’s the bit most people miss, even those who ‘get’ it.
He has some tremendous skills and talents – some even in advance of his chronological age. He is a delightful fusion of unconventional strengths, innocence, wonder and exploration combined with a lack of self-editing that can be truly revolutionary if we celebrate and recognise this rather than try to stamp out his individuality in the name of conformity. Some of the greats of our world have marched to their own rhythm. They saw and experienced this world differently and in doing so, they changed things. No, our society is not lesser because of that mismatch between my son’s age and maturity and skills – it is enriched by his differences. If we just allow him space to grow.
I guess my hope for this New Year is that we understand that time bends and moves differently for different people.
He deserves to be celebrated for all that he is, not merely tolerated.
I want this New Year to be full of exploration and wonder and mystery and love – for all of us. Each and every one of us, including those who walk this world with FASD. I want there always to be hope.