Old Photos and the FASD We Didn’t See

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By SB_FASD

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.

For parenting resources, please be sure to check out the resource pages linked on the left-hand side of this blog.  Two favourites are here:

Information Leaflet for Parents and Carers of Children having Received a Diagnosis of FASD

FASD: Strategies Not Solutions

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10 thoughts on “Old Photos and the FASD We Didn’t See

  1. Wow a very powerful and emotional piece right from a deeply loving heart! My tears fell too when reading it for your son, you and you all as a family …….. if only we could turn clocks back and recognise and understand things at the time and not as so often happens in life …. in retrospect. But we can’t, and you sure were loving and caring for your child, top notch and brilliantly, and the power of your love for him even in those years where you didn’t know or have an informed understanding is so very very evident. As soon as you did know you have set about seeking a wealth of information and use a whole host of strategies to do your total upmost to help him now. Plus you are now heading up an organisation to help others too with all the information and guidance etc. You are now way ahead of many of us who are still floundering with the what and how of this unique way of understanding and parenting. Your blog was very poignant for me as well because I share your guilt as my son is now 11yrs and we have not even managed to access an assessment and possible diagnosis yet. Likewise, because of my own work specialties I have used numerous traditional parenting styles, which did not work and pushed us to the brink of adoption breakdown. I should have thought of and realized FASD, especially as I knew of birth mum’s drug and alcohol use, but I didn’t and blocked my mind with the SW’s preadoption opinion that he hadn’t been affected! I share your guilt feelings of having let my wonderful son down with 9 1/2 years of not thinking, knowing or understanding and so parenting in a completely wrong way. Thankfully our strength of love throughout for each other has kept use together and has gets us through as we would always reaffirm we cuddles and activities together after we have to get through the stormy times that will erupt during everyday. Should we be feeling all the guilt for having let our boys down? Probably not but as we love them so dearly and want to do our absolute best for them, we do. But why should we be holding all that guilt when actually the root of the failures is with the services that are diabolically lacking in understanding and providing assessment, diagnosis and support! Both SS and the NHS should surely be to blame more than us but ‘organisations’ don’t have feelings like a parent does so we have no choice but to feel and own them regardless of whether that’s right, fair or justified!

    Thank you for your openness, honesty and for sharing so deeply x

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    1. This made me tear up – thank you! It’s so obvious that you ‘get’ the complexity of these feelings. It’s not as easy as people saying ‘don’t feel guilty’ – because we do, even if we know intellectually we should not. But you are 1000% right that there are bigger systemic failings that leave those with FASD and their families/carers struggling for too long. And you are also so right that our love is what matters the most. Thanks for taking the time to share your story and your support. As they say, together we are stronger. xx

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      1. Yes I do ‘get it’ and it’s clear that we’re similarly battling with these emotional complexities! It so good to link with someone who understands. Thank you 😊

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  2. Beautiful written. Our daughter was diagnosed fairly early but we still struggle to remember and understand that her brain just works differently. Also the uphill battle of getting other important adults in her life to really understand. Every day we learn something new and try our best to do better. Our children are truly amazing.

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    1. Ah, yes, the challenge of trying get others to also understand … it can be overwhelming sometimes, there is so much to do. Truly amazing is so true! And so long as we continue to see how truly amazing people with FASD are, that is where the hope lies. Always looking forward. Thanks for your comment and all good wishes!

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  3. Wonderfully written , my oldest was 16 yrs old until we understood why he did the things he done , all that time being seen as behaviour problems , difficult , aggressive. All the time he was seeking safety , trying to get away from all the mad noise in the playground so walking out of school at 4 constantly. Hitting teachers in face when they came to close , he said he could read their expressions and they frighten him, head banging from 8mnths , I could write a very long list. This lack of understanding has caused secondary and tertiary characteristics after yrs of being told ” you are the problem ” “naughty” where my other child diagnosed younger was seen as “having a problem” and was given lots of support. There have had completely different outcomes due to this. Thankfully I understand and can support them both now but it’s so crucial to have a early diagnosis and professionals that know how to recognise FASD. Saves years of heartache!

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  4. I am almost crying as I read this. My parents adopted me at 1 month old. They were in your shoes. I was diagnosed at 34 years old. My mom told the pediatric gemeticist…yes she was the only on e locally who could diagnose…my mom told her they just loved me. I had quirks but they thought it was genetics. Your story…your sons story is incredible. Amazing . I just told my story at the American Adoption Congress Conference last week. So many people were intigued. So many have to be educated. Don’t ever stop loving your son or telling your story. And I am going to tell you not to feel guilty. I know you will though because you are a mother. A good mither. That is what good moms do even when they shouldn’t. Do you know 95 percent of children with GAS who are successful in life is due to the environment they were brought up in? So you are doing a good job mommy. Hugs to you. Xoxo Rebecca

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    1. Rebecca – that means so much to me, thank you for your comment and for all you do to help others understand. You and other adults with FASD are the trailblazers – I feel so sad when I think of all those years of not being fully understood, but the strength and courage that proves you have is humbling and so very inspiring. You have my deep respect and solidarity. You are so right that loving our guy is the most important thing we can do. Thank you for reaching out and for your kind, generous words. xx

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  5. Thank you for this article. We have two kids that have FASD without full or any facial features. It is such a hard journey to diagnosis and now figuring out how to parent better.
    Blessings, Dawn

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