My favourite Maya Angelou quote goes something like this, “I did then what I knew how to do. Now that I know better, I do better.”
But I can’t help but feel sad at times for what might have been had I had more information, more insight, and more understanding into our son’s struggles at an earlier stage. I love the Facebook “memories” that pop up daily in my news feed. But this steady drip of what we were doing 3, 5 or 7 years ago stabs my conscience. Our son was adopted at 16 months. He was not diagnosed with Fetal Alcohol Syndrome until he was 10 (he’s now 12). He had lots of therapies over the years, don’t get me wrong, we were constantly in and out of every sort of appointment possible. But no one gave us the overall framework to understand our guy’s struggles – we were micromanaging various issues. No one said, “Your guy’s brain is wired differently.” No one gave us the lens to understand what we were seeing.
As a result, for too many years we just did not understand what he was showing us every day, in every way he possibly could. How absolutely devastatingly frustrating those years must have been for a child who was struggling so hard to find his voice, to find his place in this world.
In one photo, it’s his second birthday. We had just moved across the ocean – a huge world-shifting move for us all. Our little guy is in a high chair, some cake with lit candles is in front of him. He is beside himself crying, face red, I am down low at eye level – looking at him. My face is confused, concerned, bewildered. That photo most of all makes me want to cry. It says it all – the love, the confusion, the chasm of misunderstanding, his world crumbling – burdened with our good intentions.
There are photos of him holding our fingers and then bouncing and bouncing. We called it his ‘happy dance’ – since he was always happier after he did it. He was showing us that he needed deep impact to feed his proprioceptive senses – that it helped him feel more centred in this world.
There are photos over years with a constant bump on his forehead from where he would bang his head – either walking directly into walls, or banging the floor (he also used to poke his eyes). I now understand what one occupational therapist tried to explain about how when his system was so overwhelmed sometimes that a powerful pain signal would be reassuring, give his system something concrete to focus on. (Why oh why did they not tell us how to avoid him getting to that point? There are strategies, we know now, but didn’t know then….) There’s another photo of him, age 5, smelling daffodils. He looks more like a 2 or 3 year old, so tiny but we didn’t see that then – not just that his physical growth was lagging but also his social and emotional levels were so far behind other kids.
A video of him in a nativity play at school – perfectly in rhythm with the music, shaking some bells a wonderful teacher decided to give him so he had something concrete to do because he couldn’t stand still, couldn’t follow the story. So obviously inundated with sensory overload but valiantly there in the mix of the other kids. What were we thinking? How do you balance that triumph of his overcoming a moment with the desire to want to cuddle him and protect him from exposure to such an overwhelming environment? A video of him in a theatre group – perfectly in rhythm with the music from Grease, but so small, looking left and right to see if he is doing the right thing. (He was.) The remembering of moves was made easier because they were linked to movement and music. A sign of his need for multi-sensory learning.
Picture after picture of him in mud, playing with bubbles, in dress up clothes that swirl and provide sensory input, in pillow and blanket forts that give him the needed feeling of safety and comfort. Some photos of things gone wrong, moments of tensions that exploded. Holidays where you can see the strain on all of our faces. Tears at broken toys. One incredibly heartbreaking photo of him sobbing with distress on his brother’s birthday, unable to understand why he was not getting a present too. That time on holiday when he made a list of what we would do that day on a toy blackboard – showing us he needed structure we were not providing. We thought it was cute. We didn’t realise he was showing us how to stop him from drowning.
Photos over several years where we now see clearly the facial features of FAS and wonder why those medical and other professionals around us didn’t see it too. Suppressing the bitterness, feeling just maybe they let him down most of all.
I would have done so many, many things differently for the toddler, for the young child. I would not have forced him to sleep listening to music I chose, or in silence, or with a night light, or in pajamas that had feet in them. I would not have held him to stop his rocking. I would have better understood his aversion to some foods was sensory-based. I would have given him more structure, less input. I would have known that his brain was in danger of shutting down with too much input. Most importantly, I would have slowed down. Changed the environment. Turned off the background noise. I would never have taken him into those stores where he always had meltdowns. I remember my husband spinning a shopping cart with him in it as the only thing he could think of to try to calm our child in full meltdown in one store. I was mortified but I see now why that probably worked. (I also see we should never have been there in the first place.) I would have taught our son differently. I would have realized those times when we struggled to get him screaming into the car seat were times when we should have helped him calm, we should have reassured him, handled transitions more gently. I would have listened to him. I would never, never have put him into those time outs. (Thanks very much, tv nannies – your strategies actually do not work for all kids.)
It would have changed my world, his world, our world to know then that he was not having tantrums, but in those heartbreaking, adrenaline-infused moments he was incapable of doing what we were asking him to do and we were the ones…WE WERE THE ONES who needed to chill out.
I didn’t know then what I know now. This steady drip of pictures reminds me of that. And I struggle with that guilt that bubbles just below.
But then, I look harder. I also see hope in those photos. I see the exuberance of a lovely spirit that was not crushed. I see a child who felt empowered as a part of our family to keep trying to tell us what he needed in those ways he knew how. I see a strong-willed boy who has always had to battle for himself, to find his own way forward in the face of every external pressure we and the schools applied. I see a kid who has never given up, though the pressures of the world nearly crushed him last year.
I see a kid day after day, moment after moment seeking answers to why his world is so confusing. I see a kid who trusts us still, despite what he sometimes says when impulses run faster than social niceties. I see a fighter. I see someone who can make it in this world even when the powers that be don’t ‘get’ him. I see an amazingly brave and resilient soul who has so much to teach us all.
I can’t change the past. I can’t take back those days of not understanding. But I sure as heck can do better now. And I am learning. Constantly trying to better understand how to help guide our son into his future. I am sure years from now I will look back at these days and wonder why I didn’t know more. I’ll need to suppress my thoughts of inadequacy, ignore that simmering guilt, the fears that maybe I am not good enough for this job.
I guess all I can say is this: I’ll do what I know how to do, and when I know better – my dear son I can promise you this – I will do better.
In the meantime, keep shining. Keep showing us the way. And I will trust in you too.
Note: For every person with the facial features of Fetal Alcohol Syndrome, experts say there are 9 or 10 others on the Fetal Alcohol spectrum – and while diagnosis was hard enough for our son who when finally tested had 100% of the facial features, for others it is even more difficult – a ‘hidden disability’ that is way too often over looked.
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