Respecting Differences in Those With FASD

blog_differentBy SB

“It’s OK to be different.” We say it without thinking, repeat it reflexively.  In a family with a child with special needs, it becomes a mantra.

But, do we really mean it?

I have been thinking about this a lot lately.  Our kids used to love the book by that title by Todd Parr.  It’s a great book, so colourful and accepting – all about the very many differences there can be in the people all around us.  I loved the book until the day our older son asked if it would be okay to have mac and cheese in the bath, like it says in the book.  Parental dilemma.  And yes, I swore under my breath many a time at the author’s folly – wondering why he had to include that page in this book.  To my credit, I didn’t say no.  But it took me months to serve up mac and cheese in the bath.  I guess, it’s okay to be different up until that point it when it battles against some deep fundamental hidden ‘norm’.   Yes, I eventually spoon-fed mac and cheese to both my kids in the bath. Miracle of miracles, they didn’t die in a swamp of germs.  It turns out I didn’t need to be so closed to the idea.

“It’s OK to be different.” Sure.  It is.…until that day when you discover your child is the one who didn’t get an invite to the party that everyone else in the class got invited to.

“It’s OK to be different.”  Yes.  It is.…until it’s your kid who is bottoming out on the standardized test scales and who can’t keep up with the homework other kids breeze through.

“It’s OK to be different.”  Absolutely.  It is.…until you are in the store and it’s your child having a meltdown because that toy or that candy you can’t afford/don’t want to buy/believe would be unhelpful for him is right there and he really, really wants it.  Now.

“It’s OK to be different.”  100%.  It is.…until you realise that whatever it is your child wants to wear that day out there in The Real World makes you cringe because you know it might draw attention to their usually ‘hidden’ vulnerability and people might disapprove. Or worse.

“It’s OK to be different.”  Yep.  No question.…until the specialist with degrees dripping off his wall stands there and tells you in even tones that your kid has irreversible brain injury and will need support for the rest of his days.

And then what?

What do you do when you hit your own internal prejudices and presumptions day after day after day as you try to parent a child who is, well, different?

That’s when you really begin to think hard about just how okay it is to be different in today’s society.  Because, different has a whole lot of levels.  And this big wide world is not always kind.  And life happens fast and furious and we don’t get a time-out to wrap our heads around all of this.  Pressures are intense.  It gets hard.  And then harder.

But the reality remains.  People with FASD are different.  Their brains are wired differently.  The communication between different parts of the brain is altered.  There is no amount of wishing or wanting or correcting or punishing or ignoring that is going to change the fact that a person whose brain was injured by prenatal exposure to alcohol processes information differently than someone with a so-called ‘neuro-typical’ brain.   This is fact.

“It’s OK to be different.”

➤So, when you have an appointment that you have waited months for, and your child simply cannot cope with the added stress, with being rushed out the door and starts screaming…what do you do?

➤When you just made that meal because you know all the foods on the plate are ones that your child likes, and they say they can’t eat it because someone breathed on it….what do you do?

➤When your child wants to show you for what seems like the 50th time that day a YouTube video that you have already seen 100 times….what do you do?

➤When your child is shouting obscenities at you, maybe throwing things, dysregulated because something went wrong at school and you still can’t figure out what it is….what do you do?

➤When you know your child must brush his teeth because the dentist said he is getting cavities, but he reacts like nails are being scratched on a blackboard…what do you do?

➤When you stare at another broken screen and you know he just couldn’t control the impulse to smash it out of frustration but you cannot believe this just happened again….what do you do?

➤When you go to reach for that treat in the back of the cupboard that you were saving for a special day, and you see little hands have been at it already or when you realise someone has squirrelled away that scarf you really like under his bed…what do you do?

➤When you are tired and lonely and at the end of your rope and your child does something for the umpteenth time that you have told them not to do and you are really irritated….what do you do?

➤When you just finished cleaning, and you turn around and see flour all over the counter from yet another science experiment and the eggs are all gone, having been smashed in the garden…what do you do?

➤When the school calls yet again and tells you your child has been “poorly behaved” and you have to go to the school…what do you do?

➤When it’s the middle of the night and your kid banging around in their room has woken you up yet again…what do you do?

I would suggest, unless you are up for sainthood, you forget.  You forget “it’s OK to be different” and frustration surges inside you.  Sometimes it explodes out of your mouth.  Sometimes the aggravation crushes you, weariness blinds you.  You forget that we are supposed to celebrate our diversity, we are supposed to live what we preach.  You forget it is okay to be different.

But…not every time.  Sometimes you take off your tired hat, and you have on your superstar hat.  Sometimes you remember.  Somehow, eventually, you remember more times than you forget.  You retrain those parenting muscles.  You change your reflexes.

And most importantly, you begin to accept that ‘different’ can be more than just what someone is wearing or how someone talks.  ‘Different’ can also be the way someone thinks, the way someone experiences the world.  If it’s “OK to be different” then it really is okay if he or she can hear you say “we’re going in 5 minutes” and not understand what that implies for what they have to do in those five minutes.  If it’s “OK to be different,” it really is okay if they simply don’t have an internal timer to tell them the difference between five minutes or five hours.  If “it’s OK to be different” and we really mean it, then we will change our expectations of that person and accommodate them with clear signals, maybe visuals, about what we are doing, when we are doing it, maybe why we are doing it.  Every. Single. Time.  We will make that all explicit rather than assume they ‘get it’.  We will adjust our actions, rather than take shortcuts and get ticked off when they don’t respond as we assume they should.  Each. And. Every. Time.  Until it is our new norm.

If it’s really “OK to be different” then we will lose that resentment, that frustration we feel when confronted with those differences.  This is key.  This is the unspoken challenge, so very hard to achieve.

My husband and I figured out at one point that we were signaling to our son at least a hundred different ways in a day that his instincts were wrong, that his thoughts were not right.  Our language was full of “no-s” and “don’ts” and “stops”.  We were telling him in ways big and small that he wasn’t conforming, that he wasn’t ‘right’.  Nothing he tried to do, thought about doing, wanted to do – nothing was ‘right’.

It was a sobering day for me as a parent.  Heartbreaking.  We backed off.  We started to give him space to work through things in his way, a different way.  We started to listen more closely, to understand his way of thinking – rather than always expecting him to understand our way of thinking.

We began to trust that in his different way, he has wisdom that we can all benefit from.  We began to accept.

Yes, it also helped when he recently moved to a special needs school and the pressure to conform was lifted.  But it’s so much more than what school he goes to and whether or not he must wear a tie every day that he feels strangles him.

It’s about respect.  It’s about remembering everybody’s brain IS different.  And it’s about honouring that difference – not repeating phrases that we become numb to hearing.  If it IS okay to be different, that must mean we are equal even as we are different.  It doesn’t mean “my way is the right way, but I will tolerate his differences.”  It means “his way is just as valid as my way.”

I don’t pretend we are anywhere near perfect on this.  We slip into old habits and old patterns all the time.  We still want to shield our son’s differences from people we assume might be hostile.  We get frustrated way too quickly, even if he is trying to explain what he is doing, why he is doing it, or simply just enjoying his moment.  We don’t wait, give space to his version of things.  We don’t always accommodate his uniqueness.

And yet – somehow over time, it really is okay to eat in the bathtub, says the more relaxed mum, the weathered mum who just spoon-fed her 12-year old youngest son raspberry swirl ice cream in a shocking blue bath while he played messy play with foaming soap. The mum who owes the author, Todd Parr, both an apology for having sworn at him so often and a sincere thanks for the way he forced me to challenge my assumptions.

There is no longer any doubt in our house – mum will indeed feed you in the bath (or shower too) if you request it.

Different?  For sure.  And it’s okay.

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8 thoughts on “Respecting Differences in Those With FASD

  1. indulging a kid’s horrendous behaviour is certainly one approach — but kids have a habit of living up (or down) to expectations.

    My sisters were drug- and alcohol-exposed in uteri ans adopted at ages 7, 8 and nearly 17, from foster care, that they’d been in for 5+ years. All three are college-educated, gainfully employed and happily married 20+ years later. Indistinguishable from me, the much loved and wanted biological child of married parents with graduate degrees. (My eldest sister is my BFF from kindergarten, and my younger sisters are her biological baby sisters. I and my/our parents consider their parents family, my kids consider their parents grandparents and we’ve celebrated all holidays together for the 10+ years they’ve been sober).

    My parents had the exact same expectations for my sisters as they had for me… and they lived up to them. Prenatal alcohol exposure + neglect doesn’t always do as much damage as slacker parents seem to want to assign blame to.

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    1. Hi Kaylee – That’s a truly wonderful story. What you don’t mention is…did any of them have a diagnosis of a Fetal Alcohol Spectrum Disorder? Being exposed to alcohol doesn’t mean they have FASD. Sadly, your comment gets right to the heart of this. There is nothing ‘slack’ about parenting strategies that accommodate a child’s disability. Too often parents and carers raising kids with FASD are blamed when really it is society not understanding that just because you can’t see every disability doesn’t make it any less real. All good wishes to you.

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  2. Thank you for every single word! Unless you live it you have zero comprehension of how mentally exhausting it is 24/7.
    As a single mom God always meets me exactly where I’m about to break down…..
    He gives the best hugs ❤️️❣️

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    1. Thank you for your kind words…we are stronger than we realise… My hat is off to any single parent out there, especially those raising kids with FASD…glad that your faith gives you strength. It’s important to feed the soul. Be well.

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  3. I love, LOVE your blog!!!!! This hit too close to home for me. I want my kids to be accepted for who they are but when we are in public I push them to fit in. I think we often do this because we want them to feel included and not different. My 11 year old was just chatting with a friend. His friend knew a lot about animal classification. I heard my son speak up and say that he was smart too! It hurts so much when they feel like they don’t measure up. Thank you for your stories that help me believe that all the quirky things we do are ok, for us!!

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    1. Thank you so much for your kind words, it helps us too to know we are not alone – it’s hard for the kids – but there are so many ways to be ‘smart’ and kind, and all different kinds of ‘intelligence’. It’s just so hard when emotional ages are out of synch with chronological ages…it makes ‘fitting in’ so much harder. We keep hearing from adults with FASD that it seems to even out somehow in the mid-to-late 20s…Thank you for reaching out. All the best to you and yours.

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  4. As you know my son is not yet diagnosed FASD but all of the above hit home. Exactly why, when he didn’t quite fit into Autism, ADHD, SPD…Etc etc FASD was like a lightbulb moment.

    All of the behaviours apart from tooth brushing, describe my J. Lol Especially his very unique sense of dress which seems to be calming down as he gets older. But certainly the dysregulated behaviour after school, the food issue, the meltdowns in shops the interrupted night, allll very familiar.

    I definitely had to change my way of thinking to bring peace to my house and like you, I often find myself slipping back to traditional parenting. But when I have to explain to my youngest for the umpteenth time that his big brother, just has a different brain to him, same as mine is different to his and his is different to everyone elses, it really hits home how much J really does stand out from the crowd.

    Then I thought, ok, he’s outgoing, outspoken, behaves quite immaturely sometimes when in public. But what is he really doing that’s bad? Who is he really harming? He’s expressive, loving and wonderful. Others my get embarrassed around him, but I embrace his excentricity.

    As for the bad stuff, it comes, it goes, i try not to hang on to it. Each night the slate is wiped clean and the next day is a fresh start.

    Big love to you all. Being different is more than ok, it’s wonderful. 😊😊😊

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    1. Love love love this. Thanks for the comment, thanks for sharing the journey. Your little ones are learning resilience from you. That fresh start every day is so key. And so encouraging. xx

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