Crunch Time – Beyond Broken Doors and Dreams

 

This piece also appeared in the Huffington Post under the title: “The Moment You Reach Breaking Point As A Parent“

By SB_FASD

There is a certain sound when something hollow gives way in the face of force. A crunch and a silence that leaves us a bit stunned for a moment. We sit there, frozen, as the knowledge sinks in that there’s no going back. There’s only forward from this spot.

Parents with children with Foetal Alcohol Spectrum Disorders and other disabilities are often familiar with this sound. Doors, walls, toys, electronics. Spirits. Dreams. Hopes. Things cave in when under enough pressure – whether it’s quick and impulsive or constant and unrelenting.

We are faced with big and small moments where realities compress down into one critical instant. And we are left with a choice of what do to when we realise something has broken – around us, within us.

I was standing in that space last night. It has been a difficult few days. It’s a school holiday. It’s never easy when we go off-schedule, especially when combined with other family and work pressures. Resilience is low.

England’s relentless gloomy weather lifted for just a while. We were trying to be outside, active. Maybe we tried too much. It doesn’t matter how we got there, it happened. It will happen again.

I had a choice. I said something unkind. I could lay out the reasons – how after hours and hours of our son teetering on dysregulation my own tensions had ratcheted up to the point where I lost my filter. I think you’d understand. It even involved a dog with digestive issues. A certain person with sensory issues trod through the results and spread it across two floors and onto his bed. It ended up with the duvet being thrown down stairs, panic from too many bubbles in a bath and my inability when personally exhausted to handle multiple crises on multiple levels in one moment. It was fairly spectacular in retrospect.

I don’t even know for certain that my son registered my unkind comment. We certainly were back on solid ground not long after, once the dog was outside, the bubbles were tamed and the bedding changed. The floors cleaned. But that is not the point. I know what I said.

Maybe others have those things they have said in those moments. Words we cannot recover. There is no going back, only going forward.

So much is written about children with ‘violent’ behaviours. Our schools and our culture focus on stamping out ‘rudeness’ and ‘aggression.’ There is a great pressure on parents to raise children who conform, who ‘fit in.’ But some children don’t conform to societal rules because they cannot due to the way their brains are wired – at least not unless significant accommodations are made. It’s not because they are naughty.

I am pretty on top of this ‘alternative parenting’ concept and yet I still feel the weight of that external pressure every single day. Someone gives a funny look when we are out and our son – who is trying his hardest but is struggling – might use choice language. Someone frowns in disgust when they see our guy on a path, wearing some pink lipstick that was a give-away on a pop magazine, ignoring his joy while projecting her disdain. A relative who otherwise gets it writes in capital letters on Facebook that it’s time to cut our son’s hair that he has proudly been growing for a year. We watch TV shows full of happy families, see pictures in social media of friends on idyllic family holidays. Never mind exotic beaches, we can’t manage a meal out without a server having to bring us five extra forks because the ones at the table were all ‘bent’ – and by then it’s too late as our son is just not going to eat the sausage and mash we just paid for, no matter how hard the parents at the adjacent table stare at us. Yes, that was all part of our yesterday. Pressure comes at us from every direction as parents of a child who is different. Teflon skin apparently has its breaking point too.

Once something has given way under such pressure, there is no going back. You can sometimes patch things up, but not everything can be ‘fixed.’

It doesn’t always happen with an explosive jolt – like a kick landing on an already damaged bedroom door, snapping off its lower hinge yet again (that was two days ago).  It doesn’t always happen with a swift snap – as when a new beloved hairdressing doll gets shattered when thrown down the stairs after a pretty amazing attempt at a fishtail braid gets muddled at the end (also two days ago). Sometimes the pressure just builds and builds outside us – like a diver going deeper and deeper. Even when they surface they just can’t breathe. The body has dealt with so much pressure for so long, they need help to function again in the ’normal’ (whatever that is).

I picture that tiny defenseless developing embryo or foetus, doing its best to grow in all its complexity, day by magical day in utero, being pressured by alcohol pushing and pulsing where it should never have been. I think of the billions of neural connections starting to fire away, being washed repeatedly in the womb by a torrent of teratogenic ethanol delivered straight across that placenta into the space meant to be safest of all. I imagine that alcohol sitting there for days, with mum not knowing that long after the sweetness or relief has left her lips, it continues to press its mark on a new person’s future, dissolving unknown potential, collapsing the full range of that little being’s abilities though thankfully unable to alter its magnificent soul.

Yes. There are pressures and forces outside us, within us that sometimes we cannot control.

Yes. There is no going back, only going forward.

We each have a choice. What do we do when ‘perfect’ is no longer attainable?  The door is broken. The words were said. The alcohol did its damage. We are here, now. Where do we go next?

A friend who is an adult with FASD has the answer for those who are lost, confused, who don’t know what to do when the big emotions flow. Where there are no textbook answers for what to do next, she says, “Ask yourself what would love do?”*

Love would forgive – others, ourselves, society. Love would hold close and not push away. Love would embrace and find peace. Love would forget about perfection and revel in the joy that can be found in the here and now.

There is always a way forward. In that space after something has broken, there is always a choice. Accept the reality. Breathe deeply in that pause. And then? Choose love.

 

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*With thanks as always to Savanna Pietrantonio, Hamilton (Ontario, Canada) FASD Parent & Caregiver Support Group and FASD: Flying with Broken Wings Facebook Support Group.

 

 

 

 

 

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Our Nine Million Moments of Marriage

This post also appeared in the Huffington Post UK.

By SB_FASD

Wedding anniversaries are bittersweet.  We look back at the pictures of joyful abandon. Younger, shinier – our faces full of love driving us toward a future we had just bought into publicly, standing before all those we cared most about in this world. It was one big whomping affirmation that yes, we were in this together now, forever.

A magic day. We felt uplifted. Friends and family literally sang us to the altar. Loved ones shared in the ceremony that made us a family unit as we waited for the children we knew we wanted. We ran on the beach, popped the champagne, danced and sang until dawn.

We said we did.

And we are.

But it’s not easy.

Life gets in the way. In families affected by Foetal Alcohol Spectrum Disorders, the pace of life can get so altered that before you know it, the whole rhythm is chaotic, off beat. And even very strong marriages can be tested and stretched beyond recognition.

It’s not because the love dies. It’s not because there are any regrets. It’s not to say that what has grown isn’t more real and more beautiful than what was there before. It’s just unrecognizable from those early heady days of skipping through the sunshine.  My sadness is that I wish our children knew those two more optimistic people. I wish I could find ways for them to know the light-heartedness and giggles that were such a part of the birth of this family.

Eighteen years later, here we are. We’re still standing.

But some days are so heavy that all I can do is put my head on a pillow and wait for a new one to come.

Moments can fly so fast and furious that I scream out too (all too often at my husband), when my calm is needed most.

We put out fires.

A sea of paperwork and logistics floods our weeks, leaving only a few weary hours when we should try to find fun but instead we retreat, as we let it all sink in.

Laughter gets muted as we try to avoid highs and lows and just keep things even rather than rocking the boat.

We are constantly trying to calm the seas.

Spices and new flavours fall off the menu. Soggy oven fries rule.

We speak less, play less, joke less, adventure into the world less. We become isolated – not just from all those cheering family and friends who gathered at our wedding but also from each other. That person we ran toward on our wedding day becomes the only solid partner we have in this struggle, the one who is in it, truly in it. So rather than holding them up, we knock at them when we want to yell, when we can’t hold it together any longer. When we need someone to blame. Some very rare couples are able to rise above this. Others fall apart due to the stresses. The rest of us muddle through, taking short cuts based on a whole lot of reserves of good will. It’s messy and disappointing at times. But it’s real. And rarely discussed.

We put on that happy face as we turn toward the world when really all we want is time alone again to reconnect, a babysitter so we can go out to a meal alone for no reason – or at least to celebrate our anniversary. We just want to watch a tv show and snuggle without worrying about wasting time that should be spent reviewing EHCPs or coordinating work schedules with medical appointments, without worrying about the 1,000 home improvements and tasks that should have been done but that we couldn’t get to due to some urgent something that had to be attended to. Without second guessing those moments that we wish we could do over.

We were easier as a couple to be around when all we had were our dreams and our love that we wore on our sleeves. I feel the weight of our family story when I sit with friends on those very rare occasions when we are out. Our tensions are very real and they are not going away. But this is us. It’s not always pretty.

And then one morning you wake up and it’s your anniversary again and you have no plans to celebrate, no cards, no presents because the last several days have been long and hard and there hasn’t been time or you haven’t made time to think about this. Or some combination of the two. A sorry state of affairs for the jet-setting couple that married in a resort town by the beach so you could go there regularly for anniversaries. As if.

You find eighteen years later that like the world-weary Velveteen Rabbit your once shiny marriage is rugged, tattered and perhaps stretching at the seams but it’s still lovely and still loved. It’s not exciting. It’s not wild. It’s tired and worn. And full of “I wish I hadn’t done thats” or “said thats”. It’s neglected and definitely taken for granted.

But it’s there. And that’s not nothing. In fact, it’s a whole lot of something. It’s 6,570 days of ensuring we did not go to bed angry at each other. It’s 157,680 hours of commitment and belief that together we can build this family. It’s 9,460,800 minutes all strung together through some very, very challenging times proving our faith in each other and in love.

We knew we wanted children and we could not have had two more amazing young souls enter our lives. This is not about regrets. No way. Every step along the way our children have made us proud. They make us better people. This family unit is so much more than we thought it might be all those years ago. Better. Bigger. There’s more meaning in each day than we could have envisioned.

Yes, wedding anniversaries are bittersweet. We look back at those young besotted lovebirds and we want to whisper in their ears, “You have no idea what you are getting into. You have no idea how hard what you are doing will be. Enjoy these moments of frivolity. You have the most important work of your lives coming up. You will be tested in situations you never knew you could handle. You are entering one of the most demanding and sometimes bewildering experiences of your lives. You are absolutely clueless. But you can do it. You will be amazed and proud of what together you can accomplish – shedding expectations and forging a bond that might become unrecognizable to you now but which will be stronger than you can imagine. Go forward, sweet lovers, you are strong enough for the new worlds you will discover together. Just hold on tight. You can’t fix what can’t be fixed but your love, this love, is the foundation on which futures depend. You can do it. You will do it. Together.”

 

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And as a p.s. – to all those out there who are doing this as single parents or carers, you have my complete and utter respect. I don’t mean for a second to imply that marriage is the only way – there are many ways to walk this journey. In whatever form a home environment/support structure takes, great love is at the root of it all. Love matters most.

 

 

 

 

 

 

 

 

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FASD: Rethinking ‘Learned Helplessness’ & Empowerment

By SB_FASD

“Learned Helplessness” – this phrase was bounced around in a meeting with the school recently. I keep going over and over it in my mind. When I first saw it on a paper, I recoiled. When it was being discussed I felt defensiveness and anger bubbling up inside me. I had to keep looking to my husband to see how he was reacting. As a school governor, he knows how to wade through the lingo. But this one was new to both of us, and it did not sit well.

Here’s why.

There remains a prejudice – even in progressive places, even among the most supportive of people – against the idea of encouraging a person to acknowledge and seek support for tasks that others can manage. A look of horror shadows across someone’s face when we try to explain that FASD is a lifelong condition, that our son will always need scaffolding and support. The defensiveness I feel is that they are questioning me as a parent, thinking that I am ‘babying’ my growing teen, denying his independence, not preparing him for the hard, cruel world.

Oh, how wrong that is.

In seeking to help our son identify when he is overwhelmed, in giving our son the words to describe his need for people to break down their instructions, in providing our son technologies and strategies that allow him to remember and complete multi-step projects, in helping him understand those things that overwhelm him and in explaining why his brain finds certain things quite difficult, we are giving him the very tools he needs for his future independence.

Forcing him to write by hand something he can easily type is not overcoming learned helplessness. Giving him technology to unlock his thoughts is showing him how he can communicate all that is inside of him.

Giving him support to organise himself and what he needs to carry from lesson to lesson is not selling short his abilities, it is removing a needless stress – allowing him to focus on the other more important things rather than using all his mental energy for that purpose.

Helping him get dressed for school in the morning is not over-parenting him, it is creating an environment where he feels less anxiety allowing him to make the major transition of the day with as little stress as possible. (And no, don’t worry, I do not intend to be helping him to get dressed when he is 20.)

Yes, I do understand that water finds the path of least resistance and so do children. Sometimes. I do understand that making things too easy can become a self-fulfilling prophecy. No one is advocating under-estimating the considerable talents of my child, or any child.

In fact, I have sat in meeting room after meeting room in school after school and office after office doing exactly the opposite – showing teachers and professionals that they are the ones underestimating our incredible son’s abilities. Understanding how his brain works, suggesting the supports he needs to overcome the challenges he faces as a result of his brain wiring, this is not making excuses – this is providing insight and explanation for how to help him be all that he can be.

You may balk at the idea that a grown person will need to take motion breaks, to find some way to get deep proprioceptive impact regularly throughout the day to help himself stay self-regulated. You may think that ‘he has to get on in society,’ and that he has to ‘fit in’. That he needs to ‘learn’ to not need these sorts of breaks. But you would be wrong. There are ways as he grows older that he can meet this need without having to crawl into a ball pit. But if there is one available, and if he asks to go to it and is denied, then it is not me making him feel ‘less than’. Together we can find other ways for him to get this needed input as he grows. We have been teaching him since before he could talk to squeeze his fingers slowly, to squeeze my hand when we are in a crowd and I will squeeze it back (our secret signal, we squeeze out the syllables for ‘I love you’ in a way nobody notices). He will learn other ways as he grows older, but the answer is not for him to learn to just sit still. That will never be his answer. We have done star jumps in crowded hospital waiting rooms. Would you rather he sit there in distress until he can no longer handle the stress and have a meltdown? Who cares if this is not the ‘done’ thing. Maybe the world needs more ball pits and star jumps for us all.

This really isn’t about one school report. It’s not directed at any one individual. My strong negative reaction to seeing that phrase there in black and white is the result of a much, much wider frustration.

People out there need to understand that Foetal Alcohol Spectrum Disorders are lifelong. Practice and repetition helps. It is highly probable and desirable that with enough consistency some things that today need significant scaffolding might in a few years’ time be do-able by rote.  That is the goal, the vision. Strategies we practice and discuss time and time again will become second nature. We have already seen this happen, seeds of strategies planted years ago are starting to bloom. Every lesson is being processed inside that amazing and complex brain of his – but we all of us need to measure ‘success’ in a different way, on a different time scale.

And – this is essential – we should not remove those supports once he is doing well.  No,  that is just cruel. That is setting him up for failure. The supports, when they work, need to be there on a daily basis, consistently.  He’ll let us know when and if he can go to the next level.

Too often we get into a pattern of crisis, supports, end of crisis, removal of supports, crisis looms again.  That cycle is because those around him – despite lots of training in other conditions – still fundamentally do not understand FASD. This happens also in homes and other settings. Things start to improve so we lighten up a bit and voila, things unravel again. The supports are not temporary. They are needed permanently.

You would not remove a hearing aid just because the person started to hear better.

In reading definitions of learned helplessness while still chewing (choking?) on the phrase last night, it occurred to me those who think this is happening are getting it backwards.

“Learned helplessness” occurs when a person figures that there is no point trying to avoid or change something negative because efforts to change it have failed in the past.  The danger of our son learning helplessness comes when he asks for a sensory break and is denied.  When he starts to believe there is no point in telling the adults around him he is struggling because they won’t change the environment.  It comes when he gives up trying to find the words to explain why this project, that assignment, that topic or this particular journey is too difficult for him to wrap his head around in the way it is being presented, to hard to endure because of overwhelming sensory input.

People with FASD should not have to learn to ‘grin and bear it’. They should not have to spend all their emotional and cognitive energy trying to contain themselves, to perform one limited task. It should never be about writing one sentence when there are supports available to help them write in paragraphs. What’s the goal? We don’t want a child to use every ounce of their energy trying to remember their PE kit or trying to sit still for the next 30 minutes. We want them to contemplate the cosmos, to study the beauty, colour and rhythms in the world around them. We want them to open their thoughts to the magnificence of this mysterious planet, to learn about great lives and small wonders. We want to hear their voices, really, truly hear the songs their souls are singing. To do that, those of us supporting individuals with FASD need to think very carefully about what we are doing to unlock their potential and worry less about how to tame them to conform.

No, my child is not learning helplessness.

He is becoming empowered.

Just watch this space.

You’ll see.

 

 

Nothing’s ‘Common’ About a Cold in this FASD Household

Available in audio format:

By SB_FASD

The germs are winning. Yes, I know that you’ve had a cold too. Everyone has. Most have even had it worse than we do. But there is no such thing as a ‘common’ cold in a home with a child with a Foetal Alcohol Spectrum Disorder (FASD) or other sensory issues. Our house becomes a streaming, swirling, hacking swamp of germs – Biohazard Level 4 with no defences and a germ-spreader who could give Typhoid Mary a run for the title. No, cold season is not for the weak-hearted or easily grossed-out.

We all hate the sensation of a runny or a stuffed-up nose. But our guy really, really hates it. He hates it so much he gouges at it until it bleeds. I recently changed a blood-soaked duvet cover. If it’s runny, he can’t wait long enough to find a tissue, he needs to immediately wipe it, and does, on whatever is handy at the moment. Despite years of showing how germs are spread, he simply cannot remember to wash his hands before touching whatever it is that is nearby. If you remind him, he becomes instantly defensive, potentially aggressive. And it’s really not fair. It’s not his fault. So we try not to harp at him while he is ill. Despite practically following him around with the Dettol spray, our house is one big petri dish incubating all kinds of germs.

It’s hard to suppress my own ‘yuck!’ when I see less than ideal habits, but I try, try to remember how hard this is for him, the child who cannot handle certain food textures or smells, to have his own internal sensory system compromised like this. I feel the mamma bear rise in me when I see that look of ‘ew’ on others’ faces when I know how hard my son is struggling even if he might not use the tissue I just offered. And yet I push him to go to school even when he reminds me (apparently remembering some of the lessons) that he will spread germs to others. It’s impossible for him with his challenges with abstract thinking to understand my shifting rules.

Thanks for the reminders, but getting him to swallow those healthy vitamin-C-laden foods that everyone helpfully recommends is simply Not. Going. To. Happen. Food is never an easy topic around here anyway, but when the throat is sore, everything becomes impossible. The child who already doesn’t like to swallow things that need a lot of chewing (except of course sweets), gets it into his head that his body ‘can’t handle’ anything else. He’s not allowed ice cream at the moment due to his cows’ milk protein allergy, so we buy ice lollies to help his throat. Rather than have WWIII around food (especially when ill), we only buy what we are OK with him eating in one go. That might include an entire box of ice lollies, one after the other. Gone. Mainlining that sugar straight into his already wonky system (and no, he won’t eat the ones with added Vitamin C, thanks). I get it that not everyone would allow this. We all make our own red lines.

For a child who already cannot tolerate the way certain fabrics feel on his skin, imagine the discomfort when he has a fever and feels uncomfortable all over but can’t name it. His system needs a certain level of movement and impact to calm itself, so our guy never (or hardly ever unless he is really, really bad) just curls up to watch TV when he is ill. (Though earlier this week, he spent two days in bed, so this ‘cold’ was more than a ‘cold.’)

No. His way of coping is to do flips on the bed. Literally. Or to make slime (though with even less tolerance when things go wonky with the ‘recipe’). Or gets involved in any number of activities that all leave him absolutely frustrated because he has even less reserves to pull on to control those impulses to toss, smash or crunch when it doesn’t go his way. He skirts the room looking for things on shelves, in corners-one of his classic signs of increasing dysregulation. It is very hard to break this concentration or redirect this when it is happening.

When a cold isn’t just a cold and the tummy gets involved, watch out, that is a whole other circle of Dante’s hell.  We’ll just leave that thought out there and move on.

Yes. We walk on eggshells when colds strike.

And of course it becomes an impossible loop because we inevitably get it too. When our heads are pounding and our own throats feel like they have knives in them and we desperately just want to sleep, we have nowhere near the parental patience that we know we need. We take shortcuts with each other, with him, with our older son (who by the way has ME/Chronic Fatigue Syndrome and when he gets a cold it sets him back in a heartbreaking way). We feel even less likely than usual to ask for help.

That’s a long way of saying yesterday was not a good day in our house.

We arguably pushed too hard. We took our guy to a new bouncy play area that was pretty amazing. He was able to act out his dream of being on Total Wipeout. This place had a rotating sweeper thing to jump over. Later, he eventually found a staff member in the dodgeball area that was so impressed by his skills that he let him flip and soar to his heart’s content in a corner.

We had done the mental calculations – letting him get the extra proprioceptive input, let him get his ya-yas out after nearly two weeks of not doing much of anything, let him go to an event with other adopted children in the area where at least these parents were smiling sympathetically and not judging regarding the ever-running-nose versus the fact we knew it might make him overtired.

We miscalculated.

In the first two minutes after the session ended, he was demanding water immediately – not able to wait until we got to the car where we had water. It became imminently clear we had deeply misjudged. Despite having repeatedly checked in with him as he was bouncing and flipping, he was not able to self-assess, to let us know he wasn’t really coping at all, that he was becoming over-stimulated, over-wrought, and physically wiped out.

We used every bit of parental skill to maneuver him home. The good news is there was no meltdown. The bad news is it took several hours of not very stellar interactions (his and ours – including some pretty poor interactions between us as a couple) until any of us could finally relax again. In retrospect, we should have listened to him that morning telling us that his nose was too stuffed up. We should have listened harder to his anxiety about going to a new place. We should not have talked over his concerns. (How many times will it take before we learn this lesson? It’s just hard because sometimes those anxieties are barriers that stop him from trying the ‘new’. So, yes, we do push. There is no instruction book to tell us when to do that and when not to. It’s hard.)

He is still sleeping as I write. I heard his music on at 3.00 am last night. He had a difficult night, my guess is that’s not unrelated. The night before he told me he had a dream about Voldemort. I should have known that was a sign. Instead of writing this, I should be disinfecting, but my own head isn’t great. My husband whose cough has become worse crawled back into bed. Our eldest whose nights and days had become inverted with his cold seems to be sleeping. I am taking this rare moment of mummy time to sort out why I feel so drained when – after all – it’s ‘just a cold.’

It helps me to remember that no, a cold in our house is not ‘common’. And while I know you too have felt rotten recently and I am sorry for that, unless you are close to someone who struggles with all these other sensory and executive functioning issues, you can’t really understand what I am saying. And for that I am glad. Just please, don’t think I am exaggerating. Don’t tell me ‘everyone has it.’ Just let me whine a bit. I will love you forever.

Now, please pardon me now while I attempt to fumigate. Don’t choke on the Dettol.
 

 

 

 

 

 

 

 

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FASD – Not All News is Good News: Speculation about the Florida Shooter is Divisive

By SB_FASD

Far from the media spotlight, in Facebook groups and living rooms around the world, people with Foetal Alcohol Spectrum Disorders and those who support them are debating a news report that speculated as to whether or not the Florida shooter might have undiagnosed FASD. A major news outlet used this raw moment to highlight the too-often overlooked effects of prenatal exposure to alcohol. Better understanding FASD is an important topic. Earlier this month a US study showed that more people have brain-based disabilities due to FASD than have autism. Days ago an Australian study showed that people with FASD are a disproportionate segment of the prison population.

But I have never subscribed to the idea that ‘all media is good media.’ Some articles play straight into the anti-disability prejudice and stigma that exists. Our colleagues in the autism community know this well and are feeling this backlash once again, since reports are also circulating that the shooter had an autism diagnosis. Linking any condition with violent acts in this way ignores society’s failures which are by far the more salient issue in such cases. It’s easier to identify the ‘other’ – someone not like us – as being ‘flawed’ and therefore prone to such heinous acts. Whatever condition this shooter may or may not have had is not the reason why he did what he did.

An adult with FASD summed up why it is harmful to link a condition so quickly to such an emotive news event: “I don’t want this to be the general public’s mental association to FASD. ‘Oh, you have FASD? Uh-wait; isn’t that what they said that school shooter in Florida had?’ YES because from now on NOT ONLY will I be seen as ‘stupid’ or ‘retarded’ now I get to be seen as having the potential to kill and EVERYTIME I get upset about ANYTHING I will be under heavy scrutiny because ‘They said this this and this about FASD.’  I don’t understand HOW this is REMOTELY a good thing! It makes me afraid to be open about it because I don’t want to frighten people; what people fear-they destroy.”

Myles Himmelreich wrote, “This is leading to a misunderstanding, judgement and incorrect information about FASD. I am a motivational speaker, FASD consultant and FASD trainer and as such I shake my head and say ‘we still have work ahead of us’ this shows a blanket statement and will continue to misguide people to believe individuals with FASD will automatically be violent, NOT TRUE. Oh and I’m also an individual with FASD and as such I say ‘please see me, know me, support me and join me in truly understand the struggles but also the success I face every day.’”

All around the world people with FASD live lives of courage and accomplish amazing things. There are many examples of FASD role models. Sadly, the media rarely takes the time to acknowledge the good work they and others like them are doing. Instead it wakes up when it can sensationalise a story. This comes at great cost.

The US National Organisation on Fetal Alcohol Syndrome issued a statement that said in part: “We see no good reason for FASD to be discussed at all in the context of this shooting. There is no evidence of any connection between FASD and violent behavior. In fact, individuals living with FASD are disproportionally likely to be victims of violent crime, not perpetrators.”

The Minnesota Organisation on Fetal Alcohol Syndrome also responded: “Many people with an FASD and their families find it upsetting, stigmatizing, and dehumanizing to read media stories linking FASD and violence. It’s worth noting that countries with similar, and even higher rates, of FASD do not have the same issues with mass shootings that we have in the United States. This strongly suggests FASD is not the issue.”
People with FASD can have more than 400 related conditions due to damage done to developing systems while in utero and secondary issues can kick in if their primary needs are unmet. It’s a complicated mix. While FASD does not equal violence, we also should not ignore the fact that some with FASD need help with channelling aggressive and impulsive behaviours that can sometimes become quite consuming.

Savanna Pietrantonio, an adult with FASD who co-chairs one of the longest-serving support groups in Canada and who helps run an international FASD online support group Flying With Broken Wings, thinks it’s important that we use this moment for developing a deeper understanding of FASD and the powerful impact that proper supports can have on someone’s life. She said, “We’ve been the less and the least and the left out for too long. It’s too bad not everyone and even most people don’t have the all the information from which to make this event into a meaningful conversation. We can overcome and cope with the trauma involved with having brain damage due to FASD when we have support. It makes all the difference with acceptance and unconditional love and someone who isn’t afraid of our brain or mistakes!”

She and others in Ontario are pushing Bill 191 to amend the Education Act to “promote awareness and understanding” of FASD and “best practices” to meet their needs to reinforce the tremendous responsibility schools have to provide awareness, understanding and support to meet these needs, rather than punishing, suspending or excluding troubled students. As Mark Courtepatte, co-chair of the Hamilton support group said, “For people with neurological disabilities, their actions are communication. Whatever his condition may be, the Florida shooter’s actions communicated that he was overwhelmed, his brain was not able to comprehend or deal with his environment of continuous non-support and not being understood. He ‘snapped.’” He noted that discussion about the culpability of Cruz’s school is missing from the media.

Raewyn Mutch, one of the researchers from the Australian study, is quoted as saying, “The longer you leave someone unrecognised with a neurocognitive impairment, the more frequently they experience negative repercussions from not having their impairment recognised…They experience more often punitive responses to their behaviours rather than reflective responses based on the fact that you understand they have a cognitive brain impairment.” In other words, it matters greatly that we recognise and address the needs of people with FASD.

FASD is as prevalent here in the UK as it is in other countries, if not more so due to having one of the highest rates of drinking alcohol during pregnancy. We have seen recent UK reports about many adoptive families experiencing child-on-parent violence. These stats may include undiagnosed cases of FASD. (In the aforementioned US study only 2 of the 222 cases of FASD found were previously diagnosed.)

The good news is research shows that using known strategies to support those with FASD can create brighter futures. This positive approach is the basis of the FASD UK Alliance which runs an online support group for more than 1,600 families. NOFAS-UK promotes FASD Wellbeing by working with those with FASD, families, policy makers and practitioners.

The bad news is there are parts of the UK where it is not possible to get a diagnosis for those on the FASD spectrum, where people are denied support by the NHS and schools despite the fact they have brain damage. If the person doesn’t have the dignity of a diagnosis, that all-important insight into the ‘why-s’ of their struggles, tools and strategies are not put in place: the support, the assessments, the Education and Health Care Plans they deserve, the benefits that are increasingly denied to those who need them most.

Here in the UK adults with FASD are seeking to create change. As Lee Harvey-Heath, Chair of the FASD Advisory Committee said on the launch of the committee last year, “It is vital that those affected by FASD have a voice. Individuals with FASD need to be heard in order to gain the support that they so desperately need and deserve.  My own undiagnosed FASD took me to a place that many neurotypical adults don’t come back from. That is what I want to prevent happening to anyone else affected by prenatal exposure to alcohol.”

How to prevent this from happening is the task for us all. It takes political will, prioritising a vulnerable and too-often overlooked segment of our society, and compassion not sensationalism. We must not stigmatise the very same people we are trying to help. We have to hear their voices too. We have to seek change together.

This is personal. I am American, though I have lived in the UK for nearly 12 years. I am mum to a teen with FASD. The reason why I would not move back to the USA has nothing to do with the fact that there are people there with FASD, just as I would not leave England because there are people here who have FASD. I would not move our family back to the USA because of the guns, the increasingly militarised and polarised society, the failing health system, the lack of safety nets for the vulnerable, the fact the sitting US president openly mocked disabled people. I most certainly do not fear people with FASD, nor should you. Fear – if you must – prejudice, stigma, and inaction. Those are the killers. Fear another generation bearing the weight of this hidden epidemic because our political leaders didn’t think we cared enough to make it a priority.

Food in an FASD Family

Also available in audio format:

By SB_FASD

Once upon a time, I imagined growing up and having a happy, bouncing home full of people who would love to sit around a table and share elbow-to-elbow in overflowing platters full of fragrant, mouth-wateringly good and abundant food.  In my mind’s eye, we’d help each other prepare the food, dip our spoons in and ‘taste test’ whatever was bubbling away on the stove, laughing, teasing, and reveling in food of all sorts, just as I did in some of the most wonderful memories of my youth.  We’d tease and cajole each other, dig in for seconds, and all help tidy up after the meal was over.  That was my dream.

HaHaHaHaHaHaHa.

As if.

Needless to say, that is NOT the life we lead today in the home I cherish despite its complete difference from the world I knew as a child.

It took years and years for me to ‘let it go.’  Years and years of slowly beginning to understand just how deep FASD reaches into my son’s very being, giving him a different window on this world.  Years and years of hanging onto that belief that one day we would somehow slide into my (previous picture of) ‘normality.’

Prenatal exposure to alcohol can damage the way a person’s brain develops. When it occurs, those intricate and as yet-to-be-fully understood neural connections are compromised, scrambled, damaged. Signals don’t go where they should go. No one really know exactly how or why, but they do know a person with FASD can have some very serious sensory issues, the damage can affect development of other organs and systems – throwing the whole body into imbalance. One part of this complex picture is that it can leave a person with FASD with a very complicated relationship with food. These issues can be compounded if there also was early trauma.

Feeding our youngest was never going to be easy – he was deprived of food early on. He had rickets when we adopted him. He had to learn at 16 months how to eat until he was full, not until his body literally threw it up (as infants learn much, much earlier). Despite his troubles, he is not even so very severely affected – we know of other children with feeding tubes, adults who have been hospitalized because of imbalances in their systems. Despite a slow start, our son is growing, doing okay-ish on the growth charts. Yet, these challenges, minor as they are in the FASD scheme of things, altered the way our entire family interacts with food, changing the way we celebrate holidays and altering daily routines to the point where our house no longer resembles the life I thought I would lead. I am not ‘blaming’ anyone here, just describing a new reality that we have accepted.

I know there are those out there who will be reading this and object to the idea that a family’s routines can be so altered. I know there are families who have managed nevertheless to convene all around a table multiple times each day.  I know it’s possible and I take my hat off to anyone who manages that. But it is not life in our household. Not now anyway.  When our guy was younger we kind of plowed on with it. We could force the issue a bit more. But as he has become more independent and more vocal about exactly what he can and cannot stomach, we have chosen not to have conflict around food in our house.  Well, we try not to have conflict around food.  But, of course, we do.

I wish we had started from the premise that there is ‘always a reason’ for certain behaviours. It might have saved us years of wrangling over food issues. I have said it before – our son has always shown us what he needs, we have just been too slow to pick up on what he is communicating to us. Even now when he is increasingly speaking his truth, we still sometimes don’t really ‘hear’ what he’s saying.

“My body can’t handle it.” As it turns out, this is true, though it took years to diagnose his cows’ milk protein allergy and more years to understand how this might affect so many of his digestive issues. Anything to do with burping, reflux, toileting, soiling, sore tummies or gas all cause great distress for someone with sensory issues. Imagine being a toddler and being unable to explain this. It’s hard enough for a 13-year old. We still don’t know if we know the whole picture, but we do know this one allergy can affect him profoundly.

“It smells.” We have come to realise that our son’s sense of smell is highly developed. Much of taste has to do with smell, so if something doesn’t smell right or good to him, there is no way it’s going down. What smells ‘good’ to him might be completely different than we might think through our more traditional programming. We have made this into a positive – we praise his sense of smell.

“It’s disgusting.” An adult with FASD in an online support group once vividly described his visceral reaction to certain foods or textures. This is graphic. He said when he is being forced to eat something that his body is rejecting it is like being forced to chew and swallow poo. He said there is no rhyme or reason to it. He can’t explain why. It just is. This is important to hear from an adult perspective because we tend to force our children even when they say such things. We have learned that there is no arguing when our son is rejecting food due to a sensory issue.  It also took us a while to understand that he actually enjoys strong flavours – vinegar and mustard and pickled onions and other tastes a child normally avoids, while something like milk chocolate somehow disturbs him. His brain is wired differently.

“Your germs are on it now.” Our son is learning rules for handling food at school. To him use-by dates are gospel. A flame a bit too high on the stove spells danger. Everything to do with cooking and serving food has its ability to send his anxieties through the roof – from the sound and feel of knives and forks on ceramic plates to whether or not someone ‘breathed’ on his food can signal the end of a meal, even before he gets to the point of tasting it.  Lately he has his own tiny (cocktail) forks and spoons, his own plastic and melamine plates and bowls, his own plastic cups. If one of us uses something of his, he won’t use it again. If we touch his food, he won’t eat it. Sometimes.

“I’m not hungry.” He cannot read his body’s signals. We know this from occupational therapists’ assessments. He doesn’t feel sensations in the same way most of us do. On top of that, he has medication for ADHD that actually suppresses his appetite. If he’s not hungry, there is nothing we can do or say to change that. We have found feeding him unusual breakfasts (burgers or salmon) and planning later substantial ‘snacks’ (fish fingers) at bedtime can help ensure he gets the nutrients he needs. This is especially important as we have been unable to get him to take a multivitamin for a while now. We are picking our battles with pills.

His body and mind fixates on things – this is also directly related to how his brain works and maybe even his nutritional needs. He craves foods. He can go days on end where all he wants are avocados or pepperami or salmon or…. If he knows something is in the house that he is craving, it is impossible to divert his attention from it. But these things shift from day to day, making it very frustrating when we stock up on something that is ‘in’ one day only to have it rejected again for months. The situation is not bad enough to lock up cupboards (though we understand that some need to). We just accept that whatever is in the house he may eat. If we have candy, then we only have as much as we are willing for him to eat in one day.

He is a hands on guy. We love it when we cook together. For years “I Can Cook” videos and recipe books played a huge role in our lives. We used to play a ‘Disgusting Menu’ game we made up where we would choose three things that would make the most disgusting food we could think of and then all yell together “Ew! DISGUSTING!!!” We have games about food shopping and food preparation.  He loves looking through cookbooks – we have some from around the world. His specialist school has a goal to teach all their students about 10 meals they can cook by the time they leave school, and he is becoming more confident about fixing food for himself. I have a plan in my head to start introducing him to recipe and food list apps as a way to help prepare him for adulthood.

He is learning about his body – we have Usborne lift the flap books that show the progress of food through the body, we have watched over the years the “Magic Schoolbus” episodes that help kids understand their anatomy. He has studied books about the food pyramid and knows he should ‘eat 5’ every day. He has memorised “Oliver” and he has a bowl that says “Please sir, I want some more” on it, a chopping board with the music script from “Food Glorious Food.” But none of that helps at that point where he simply cannot put that particular food into his mouth at that particular moment on that particular day.

So, we have changed our expectations about socialising over food.  Our best successes are always when we have a range of foods that he is free to choose from – a ‘smorgasbord’ where we always have at least one or two things we know he will eat and then we don’t comment if he avoids other foods. When we are in restaurants (sensory hell for him with all their confusion, noise, smells, anxieties) he is allowed to be on a phone or tablet. We limit holiday sit-down meals and we give him a place he can go to when he wants to leave the table. We have spent our fair share of time eating pub roasts outside so he can swing on play equipment while we eat quickly. If family and friends come over, we often do pizza or BBQs rather than the type of meals I would like to prepare, but which take my full attention – attention I am unlikely to be able to give to the stove when visitors can peak anxieties in many other ways. We let him eat quietly in his room for most meals – it seems to let him relax into it more when he doesn’t have the other anxieties of (for example) trying to figure out how long he needs to endure sitting at the table while others scratch their forks on their plates.

These issues are real. Research supports this. As one small study said, “children with PAE [prenatal alcohol exposure] may be at risk for nutritional deficiencies, which are influenced by inappropriate food preferences, disordered eating patterns, medication use, and the stressful dynamics surrounding food preparation and mealtime.” (Interestingly, I googled and found this quote AFTER I had written this blog post! There are many other studies as well.)

For someone with FASD food can become a trigger point in so many ways. It’s not fair to let this be a battle ground when the person with FASD is clearly struggling. ‘Dig deeper into the why-s of it’ and ‘let it go’ are the two main bits of advice which have helped us re-develop our family’s relationship with food. And yes, we allow ourselves still to giggle over ‘disgusting menus.’

Keeping the laughter and joy about food means a lot to me. Readjusting our relationship with food as a family affected by FASD does demand a lot more patience and creativity than I sometimes feel able to bring to the table, though we will never give up trying.

No Going Back

Audio file for those who prefer to listen:

By @SB_FASD

Things were sailing through the air again. How hard it was to wrap my head around that fact. I couldn’t stop my own frustration and disappointment from compounding what was actually happening. We were past all of this! “WTF,” I thought. (Sorry, but that is the thought I locked onto. My own shock and tiredness took over.) I picked up a smashed CD, with edges sharp as a knife. A phone charging cord was whipped in my direction. Fast. Furious. More powerful than I remember. He is growing after all.

Sadness. Deep sadness.  (Mine.)

Will he always have these cycles?

Will this always happen – when we think we have things sorted and then it gets up-ended?

Self-loathing.  (His.)

“I can’t be trusted with electronics!” He says this as he starts throwing them. I beg – totally off script. I beg for him to please, please, please just put things down, let me help him. I am oxygen to his inner fire.  I know I should not be here saying these things this way, but I am.

I am deflated. In that moment I am feeling beaten. I am ashamed. As I was defending myself from the flailing cords, I made open-palmed, light but definite contact with the top of his head. “I am sorry, I didn’t mean that.” His betrayed eyes deserved more. I said it: “I am afraid you are going to hurt me with those cords. You HAVE to stop this.” I am completely off script. He stared at me. Shocked, I think, that I said I was afraid. Why couldn’t I stop, regroup, do this right?

I did get it right – eventually. Once I found my footing again. We didn’t have any major breakage. He did find his way back to our agreed strategies. No electronics were sacrificed. No one was hurt. It was all over fairly quickly, at least when measured by the scales of days gone by – those times that were haunting me as this meltdown began.

It’s hard. Hard for me. Worse for him. He was disappointed. I was crushed. And so mad at myself. I felt I had let him down.

He’s been telling us for weeks that something is bugging him about school. Using every way he can think of to tell us. “It’s like it was in Year 8” (meaning before he transferred from mainstream and nearly had a breakdown). “My brain can’t handle it.” “I can’t do five days a week of this.” “It’s too much writing.” “I ask but they won’t let me have a sensory break.” “I told a lie to one of my friends.”

So much is piling up inside him, we are worried. We know the signs of a child not coping.  We know what might happen if this spirals further.

But this time, this time we are in a place with access to resources that can help. And we know now how to use them.

We raise concerns with school and get immediate replies. They will look into things, do some assessments, remind him to access sensory support. We have a therapist who comes to our home every two weeks. We tell him. He will liaise with school. We agree two possible strategies and rate the things we identify as needing attention: 1) helping our son better understand relationships, and 2) helping him to recognise his anxiety and rehearse strategies. The therapist will break these down with the school. Devise ways to approach these issues. We will discuss this with other national-level therapists we will see in a few weeks’ time and feed back to local therapists. We have a quick response from the doctor regarding adjusting meds.

The various parts of his support network are all there, all onside. We trust them, they trust us. Thankfully they are not going away any time soon.

I begin to breathe again.

I let the realisation wash over me: we are not going back to that dark place.

We KNOW just how very lucky we are to have access to these people. (We know all too well too many families are struggling, denied access to such such services for no good reasons.) We are actually starting to talk now about how to help our son transition into adulthood.  I feel safety nets around him growing wider (though I know, know how fragile these are even for those adults with FASD who are doing extremely well). Friends near and far via various social media platforms extend support. Tips. Cyber hugs.

We have all grown.

We are all growing.

We are connected. We are not alone.

It was good to be reminded that fear of the future does still gnaw inside me. It’s why I haven’t written in a while. I didn’t know what I was thinking.

I faced that fear. I had to wrestle with it. Tame it. Again.

Pretending it’s not there only leaves us sucker punched when it catches us when we least expect it.

We are not in the same place we were as a family when the crisis hit a while ago. I can’t say what the future might bring, but I can breathe deep and recognise we are not in crisis now. We had a blip. We will have blips. Our son is – on the whole – doing extremely well.  He is growing, learning and yearning – a body full of hopes and dreams and desires and instincts and frustrations led by a brain that has yet to learn how to ride its waves with less chaos or pain.

But he will get there. He is getting there.

My husband heard him on the phone last night talking to a friend. The friend kept asking him, “Are you OK? What are you doing?!” Our little one replied, “Yes.  I’m OK.  I’m listening to my music.  It calms me.”

The kids are all right.

And (knock on wood) the parents are too.

Trusting Joy

By SB_FASD

Our family doesn’t do ‘easy.’ At times when I am tired and worn down I might rail against this, but when you get right down to it I don’t really expect life to be any other way.

A week before Christmas we brought home a puppy, a nearly 5-month-old mutt rescued from Bulgaria. This followed the unexpected death of our beloved, gentle Christmas dog Noel. The empty space in the lower 12-inches of this house was too great for our son with FASD to bear. We all were sad. So we moved quickly. Our idea was to bring in a dog different enough from Noel to avoid constant comparisons.

Enter Joy. (Yes, remarkably that was her name.) She is a beautiful, sweet being who had a complicated beginning. As a friend of ours, Savanna Pietrantonio, insightfully said, “We get the dog we need, not the dog we want.”

At the last minute we had to bring our son with us to pick up Joy from the kennel. We were worried that if the dog was unsettled on the long ride home it might be traumatic. On the contrary, Joy was silent the whole ride home and for the first couple of days. Our son comforted her the whole way home. They have a special bond as a result.

But welcoming Joy was and is complex. For the first time in many years I was thrown back to the days when we first brought home our son who had spent the first sixteen months of his life in a Russian orphanage. The effects of early institutionalization were familiar in a deeply saddening and worrying way.  Our little one too had been silent, not making any voluntary noises. He had been unfamiliar with any but the most limited of sights, smells, sounds, tastes, textures. His basic needs had been met but his soul was uninspired, dormant. He was withdrawn into himself, not trusting the world could meet his needs. He would retract his arms and legs into a onesie and rock himself because no one else did. He too flinched if I made a sudden movement.

Joy had lived her first five months with other puppies in what looked like a 3×3 corner of a concrete room. She was fed and warm but not able to explore, to grow, to socialize with humans. We hadn’t fully appreciated the impact this would have on her. The first morning she was here she was terrified by a garbage truck and the sound of rumbling bins being dragged along the pavement. She also had tentatively crept up behind my husband who stepped back and accidently trod on her. She was not hurt but freaked. She spent that entire day on the dog bed not moving, not eating. I was fearful, reliving Noel’s last days as I hand-fed her food and worried if maybe my husband had hurt her back, scared she could not move. But she was just shut down, uncertain. Later she growled and snapped at my husband and our elder son. She wouldn’t go through doorways. When she eventually found her voice, she barked at every sound – the heating, the trees, footsteps on the stairs. These sudden and unpredictable outbursts of course affected our son with FASD. We became alarmed that perhaps this might not work. Our house isn’t easy – and the last thing we need in our mix is an unpredictable and scarred dog.

But then I started to notice little moments.

Our son with FASD was giving me hugs, encouraging me. He saw Joy was upset. He was analyzing how she was reacting to me and he told me I was doing a ‘good job.’ He understood that she needed reassurance. He kept his voice modulated, withdrew to his room when it was too much for him. He understood that Joy was experiencing new sounds and sights that were overwhelming her, just like sometimes happens to him. Even after she snapped (though interestingly never at him) he understood that sometimes he too lashes out when he is dysregulated. He forgave her. He was using his experience to explain her needs to us. He thinks Joy sees him as her Daddy. This is the first time I have ever heard our son see himself in a paternal role, a sign of how he is maturing. Proof that while Noel was all about comfort and security, this dog is going to help him in different ways, taking him and our family to the next level.

The rest of us are having to seriously reexamine what type of energy we are projecting. Joy had an instant negative reaction to our stress. For years we have talked about our need to keep a calm environment to cognitively support our son, but Joy is forcing us to take this awareness to a whole new level. She responds instantly to negativity, showing us physically that even when we think we might be modulating our energy, the stress is still too high, still has an impact. It makes me think of all the pressure we place on our son, even when we don’t realise we are doing so, relying on him to be the one to change, to conform. Joy is showing us we are not as calm and collected as we think we are-this is an incredibly timely reminder to help us help our son as he enters these teenage years.

Joy has removed the focus from our son with FASD and has allowed us all to have a third-party discussion about sensory issues and strategies that brings our family to a whole new level of awareness. Suddenly our youngest son is not the only one in the house with needs in this area. Changing the focus is freeing for him in ways I had not anticipated.

After one particularly hyper and alarming moment, I took Joy onto my lap and I started to massage her as I have learned to do with our youngest, providing deep pressure to help self-regulation. I was discussing with our son as I was doing it that this is the same thing that helps him sometimes, he could see it working from a different perspective. Joy relaxed fully, like butter in my arms. It was humbling and encouraging. That was when I believed we could overcome her issues. We know how to help a traumatized soul. We just need patience. I also realized this would take time. So, while I regretted this happened just before Christmas, I began to welcome the timing for the gift it was. Over the holiday we have had the time to give. And I needed to slow down anyway. The immediacy of this forced me to step into the now.

This year, we simplified our Christmas celebrations. We put up fewer decorations. Everything on the tree is non-breakable just in case. We mostly stayed home and limited who was coming to the house. Those who did come came with an explicit request to be gentle and calm. As a result, despite the added chaos of a new puppy in our mix, we have had one of the calmest and most successful holidays yet.

Due to her enthusiasm at smelling human food, Joy has even succeeded in getting our family eating once again around a table. Bonus!

As our friend Savanna Pietrantonio said, “Everyone can come together for this little being who didn’t choose to be born but was chosen.” As an adult with FASD who has a ground-breaking FASD service dog, the first of the kind in her area, she has offered us a consistent stream of insight and advice on how to integrate this puppy into our lives. She said Joy will help our son become self-aware. “I really have to watch my voice and reactions now so not to scare [my dog]. I’ve become really aware of myself being myself. That’s a good thing for [your son].” She helped me to see the lesson in this for me as well. I was receiving a wide range of advice from corners near and far. But I felt this dog should not be pushed too fast, that there was healing that needed to be done first. She said, “You know instinctively how to do this. All the people around you make you doubt yourself and work against you. Just like FASD!!!!! People assume dogs are like us with FASD. We must be disciplined and obey and use logic and not spoil them! I say meet the child or dog child’s needs and they will have no needs.”

Joy is settling down, learning how to trust our pack. We have come to accept that nips are not always bites and her growls might come from fear that is diminishing with decreased anxiety and security.

She stuns me at times with her nobility, her gentleness, her playfulness, her alertness. She is a bundle of energy, a hound whose senses are highly attuned. She likes to get wet and muddy. As we had hoped, she is so different from Noel that there is no comparison. Each of us is bonding with her in our own ways. It’s lovely.

The second time we let Joy into the garden, I witnessed something magnificent. Suddenly she overcame her fear of all the unknowns and let go. She ran for what I think was the first time in her life, bounding over low walls and steps. Soaring. She had found her legs. I felt like I had witnessed a birth. It was a freedom and a feeling she had never known. I hadn’t known I needed this dog too.

I was thrown back to the early days with our son who also had lived confined within walls all his early life. I remembered the first time he felt the wind on his face—he laughed with pure glee, blinking his eye lashes, completely enthralled. It took a while but he began to welcome and not fear those horizons that are wider than his early experiences led him to believe. To learn there can be hope beyond the walls that contain us.

This sums up the lessons of our FASD parenting journey. If we nurture our belief in what is good in this world and in those we love even through the dark times—maybe especially through the dark times—if we let go of expectations we can open our hearts and our lives to what’s new and different.

Going beyond our fears and trusting Joy is going to take us to the next level.

 

 

Father Christmas Finds It Hard

By MB_FASD
It’s hard being a Dad to a son with FASD at this time of year. You want him to be happy, but the run up to Christmas is stressful for him, and that makes it hard for us. How do you keep him going when the routine at at school is swept away, making him nervous every morning when he wakes up? How can I reassure him that his meltdowns, bad language and FASD-provoked behaviours don’t mean he’s on Father Christmas’ naughty list, with no chance of redemption., a constant fear he raises? I worry that his fears lead to a cycle of worsening anxiety and deteriorating behaviour. I have to do what I can to help reinforce the positive, help build up his confidence and self-esteem. But, oh my, the weeks before Christmas are not a good time.

This year, a whole number of new factors have been thrown into our volatile mix.

Back in late October our son had an operation on his right hand. He’s still recuperating from that. He can’t do gymnastics, or play in soft play areas, or go trampolining, or even go to a playground. He can’t do anything that risks putting pressure on the hand, or injuring it during this recovery period. These are his big physical outlets, things he does all the time. It makes life much harder when he can’t release his pent-up energy. He’s even too worried to go to swimming, I offered to take him last weekend and he wouldn’t go as “the Doctor has to say it’s ok”. He needs these activities to help him regulate his emotions and behaviour. I haven’t cracked this one. I hope as the hand heals his worries will pass and I’ll be able to get him in the pool again, most likely with one of his good friends who also swims like a dolphin.

Another thing we have had to be very engaged with is his school play. This isn’t an average school performance, his school has a performing arts speciality. The quality of their productions is fantastic. Everything is on a professional footing. His first one, last Spring, was a triumph for him and the school. He loved it. This time has been harder. He learned his lines, but wasn’t able to come out of himself to show what he could do in rehearsal. I read through lines with him a couple of times, but it didn’t help. He’s been reserved, silent, not responding properly to prompts. His anxiety is compounded by his voice changing as he goes through puberty. He’s finding it hard to hit the high notes. His voice sometimes cracks, and he hates that. He has perfect pitch, and is hyper-self-critical of anything that he perceives as less than his best. He hears imperfections we don’t hear. His self-confidence takes a hit when he thinks things aren’t right.

Worst of all, a shattering blow to the whole family, Sir Noel the Wonder Dog, our little Cavalier King Charles Spaniel collapsed and died of heart failure. I traumatised a young woman at the pet insurance firm by bursting into floods of tears when I rang to cancel the policy. Noel was the rescue dog who came to us a few Christmases ago. He was so much more than a pet. He was a physical comfort for our son at times of dysregulation and emotional disturbance or upset. He was a tool that our son used to regulate himself, projecting a voice onto Noel was a way for our son to tell himself to behave, to not be rude, to be nice at times when he was cursing or verging on meltdown. Losing his partner in struggles with FASD, one of his biggest comforts in life, was especially traumatic as it came at a time of year when he needed Noel more than ever. He’s still talking about Noel, asking questions, looking at pictures. Needing his Mum and I to provide answers we don’t have. Working his way through complicated issues like has Noel found my Dad in heaven? Are they going for walks together? Apparently, the answers are yes and yes. Noel is happy wherever he is. Our son found these answers for himself. I was a sounding board, nothing more, and his Mum did most of the work.

I have to keep in my head every day that these factors don’t stand alone. They compound to drive up levels of stress and anxiety until, facing overload, meltdowns become inevitable as sensory and mental processing is no longer possible. It’s my job, with the rest of the family, to keep all the stresses and strains to a minimum. To be there, a support, a facilitator.

The brain damage of FASD means that screaming, crying, hitting, throwing terrible meltdowns happen. When a child is overwhelmed by circumstance and simply can’t react rationally any more, meltdowns happen. Our son, in common with others, just gets overwhelmed. The flight and flight centre of the brain takes over. He can no longer control what he does. He needs absolute calm and a lot of time and space to let the thinking part of his brain take over once again. We have to give him that space, make sure he is safe, he knows we are there when he can reach out. Sometimes that is very difficult indeed, but it is what has be done.

At this time of year, these problems are his, our, norm. Those overwhelming moments come more often than not. In an average year the run-up to Christmas is enough to provoke meltdowns. This year it should have been so much worse.

But, it isn’t.

We haven’t escaped entirely. This afternoon dominos have been hurled across the room, and expletives have blistered the air. A few days ago I got in the way during another meltdown and got hurt. Repetitive swearing has been heard.

But these incidents have passed, and passed quite quickly. They haven’t led to big, all-encompassing and violent meltdowns that last hours. These episodes have subsided as quickly as they erupted. Calmness has returned, leg and foot rubs have been quickly accepted. Dysregulation has swiftly become self-regulation once again. Even with the distress at the loss of Noel the Loving, our son has been able to regain lost control. He’s been able to ask for support.

How is this possible? Well, partly he’s changing. He’s growing up. We have worked very, very hard at helping him recognise the symptoms of a coming meltdown. We have had help from experts for a couple of years in giving him tools to manage meltdowns. His aunt the actor helped him through difficulties and taught a technique to hit the high notes even though it’s hard. This made a huge difference when the nights of the play came around. What might have been a step too far just wasn’t. It was hard, right up to the last minute he was saying he couldn’t do it. But he did. Two duets were a triumph. And he spoke his words with feeling and expression. He was able to get to the point where he happily soaked in the applause at the end, even while he watched the snowflake lights spin around the hall.

Importantly, we have listened to the maxim that you can’t change the child, so you have to change their environment. We have changed what we do at home to be more responsive to his needs. We skip events if he can’t handle them (we missed carol singing as I wrote this). We give him space. We leave everything as calm as possible. We haven’t done nearly as much as we should – our house is still cluttered, but what we have done has worked. I have tried hard to modify my behaviour around him. I have tried to learn the techniques that work with him.

I’ve become a different Dad, the one he needs. At least, I’m getting there.

Perhaps most of all, he’s out of mainstream school and into a place that gets him. They help him thrive. The removal of mainstream school curriculum that he couldn’t cope with has decreased stress dramatically. And their marvellous support has helped him grow.  The teachers, and the aforementioned aunt, have built up his confidence so he could get to the end of the show and soak up the applause.

So, the takeaway from all this?

Life with a child with FASD is never easy. Being a Dad in these circumstances is a challenge. But things change, he changes, the world around him changes, and if it’s bad at the moment, it doesn’t always need to be that way.

And, even when the worst happens, there is hope. Or in this case Joy. Joy is a rescue puppy who will be joining us very soon. She won’t be Sir Noel the Brave, but she will come to be a support and a companion our son needs.

Things can very definitely get better.

RIP Sir Noel, The Christmas Dog – An FASD Love Story

By SB_FASD

[Note: this post also was featured in the Huffington Post UK]

Once in a while you encounter a being so pure that you simply have to believe.

Four years ago, our youngest son was struggling.  He was in Year 5. At great cost to himself he gave everything he had at school, at home, in clubs. But he walked every day in world that didn’t understand him. None of us understood yet that his behaviours were symptoms of undiagnosed brain damage caused by prenatal exposure to alcohol.

He asked and he asked for a dog. He wanted a friend. Someone who would be by his side. No questions asked.  No demands.  He needed one sure and faithful friend.

Unbeknownst to us (though it later filtered back), he asked Father Christmas for a dog at the school fete. He asked for a dog that wouldn’t “bark, whine or whinge.”  (No pressure there!) It was a difficult decision. If we got a dog and it didn’t work out, it could potentially have a devastating impact on him.

Father Christmas sent our son a special letter that arrived on our doorstep on Thanksgiving Day while our British-American home was full of guests. Father Christmas had found a dog he wanted our family to go meet.

The dog’s name, I kid you not, was Noel.

Our little one was barely able to contain himself when we met Noel, a five-year old Cavalier King Charles Spaniel.  Noel’s first action was to lay down to have his tummy rubbed. The grins of that day will stay with me forever.  Our eldest was “euphoric”.  (He was about to embark on a multi-year battle with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis but we did not yet know that then.  Noel would be near him on many a day when he was unable to get dressed and go to school, but that is getting ahead of our story.)

We are a family built by adoption (my husband was adopted and we adopted our youngest son). We knew without doubt we had found our newest family member.  He was ill.  He had been rescued from doggie death row in Ireland.  Like our son, he was traumatized by his experiences.  He was compliant, but not beaten.  His spirit was intact.

And … he was silent.  (Just as our son had been when we adopted him at sixteen months.)

Like some scene from Miracle on 34^th Street, Father Christmas somehow knew exactly the right dog to send to our home.  Maybe he knew that we were about to enter some very, very difficult days.  Years of them, actually.

Our youngest son was diagnosed with a Foetal Alcohol Spectrum Disorder (FASD) the following spring. We found out that our son not only had the sensory issues and learning delays that we knew came from his early traumatic experiences, but underlying all of this the connections between different parts of his brain had been damaged before he drew his first breath.  He will forever have problems with executive functioning, abstract thinking, impulse control, adaptive planning. What makes sense to others won’t always add up for our little one. Into Year Six and Year Seven his school life became increasingly torturous.  He kept himself together at school and then bam!  He would explode at home like a can of soda that had been shaken all day and was primed and ready to burst.

Our house was the scene over a couple of years of sometimes spectacular meltdowns.  When our youngest’s brain was overwhelmed the fight and flight instinct would become all-consuming and powerful. He was not coping.  Worse, as he entered puberty, his behaviours were escalating. He started refusing school.  Regressing. He was confused and cornered. It was a nightmarish time. Heart wrenching. He was starting to run away.  He had taken candy from shops. He was fixated on lighters.  When you live it, you don’t always see how these things can creep up over time.

When things would heat up at home, we learned our own little family ballet. Our eldest would put on headphones and block it out via computer games.  Noel would be put out in the garden or in the kitchen where patiently, he’d wait.  My husband and I would tag team, sometimes more successfully than others. These distressing moments would come crashing down around us.

When it was over, Noel would go up to our son, tail wagging, ready for the healing. The first apologies were always for Noel.  How many tears were cried onto that Blenheim coat.  How many hugs he had.

Sometimes our youngest would speak through Noel.  He’d say (in a Noel voice), “Don’t hit Mummy, she loves you.”  “Stop throwing things, they will break.”  “Don’t say mean things, it’s not nice.” “Go to your calm space.”  We are learning about the whole “theory of mind” thing. For sure, Noel helped our son see the world through different eyes.

Our whole family needed this little fur ball. The walks along the river, through the field. The cuddles on the couch.  The impromptu games of fetch in the garden. The big, uncomplicated brown eyes staring up into ours when we too needed a constant in a tumultuous world that could change moment to moment.

He was our shin-high reminder to slow down and just let the positives wash over us.  Our very own walking embodiment of mindfulness.  Noel was our regulator.

As a family, we grew.  We learned techniques and strategies to support our youngest. He learned words like ‘dysregulated’ and became conversant on stress toys and calm spots and neurons that have trouble talking to each other.  We built a support network in our area.  Now there is an FASD Club for other children just like him.  He is not so alone anymore, not so misunderstood.

Critically, one year ago he moved into a specialist school where he is cognitively supported and where they have lots of sensory outlets for him to help him self-regulate (including school dogs).  We have found the right medication to help him focus.  His meltdowns have almost entirely stopped.  We seem as a family to be entering a better place.  Our youngest is more even, calmer, more comfortable in his own skin – though of course we have the teenage years ahead.  Our eldest has come through the worst of his CFS/ME (knock on wood).  I changed from a very stressful job with lots of international travel to one where I now work full-time on raising awareness of and support for those with FASD. We are all of us hopeful that things are on a safer and more settled path.

Sir Noel, the Sweet One walked with us out of the darkness to this brighter place.

Earlier this month we started to notice Noel seemed to be out of sorts.  He had been coughing.  There were visits back and forth to the vets.  Fireworks season here in England in early November really affected him.  His heart never stop racing, his breathing became laboured.

Noel was staying closer to us all – visiting our eldest in his room more often.  He was curling up with my husband more persistently. He very uncharacteristically (once) protectively snarled at the door when the postman came.  I think I knew what I was seeing.  I let him sleep curled up behind my legs for weeks.  My dad had heart problems.  I think I knew.

And so we found ourselves a bit stretched out, concerned as we entered this holiday season – the same time of year when Noel first entered our lives. This year, our youngest and I bowed out of early Thanksgiving festivities and stayed home instead.  Noel spent that day by our son’s side, curled up peacefully for hours next to him on a furry blanket. Our little one had just had a complicated hand operation, trying to give more motion and strength to a hand that had also been damaged by prenatal alcohol exposure. They needed each other that day, those two.  I am so glad they had that time.  So proud that our family had learned enough to not force our son into a social situation that he was never going to manage well. Relieved we have the confidence now to structure our lives to help meet his needs, to change the environment around him to allow him to succeed.  To focus on the positives and not let the negatives consume his whole world as they were starting to do.

The next day Noel was having more trouble. He was quietly seeking sunshine and warmth and simply standing there.  I guess some might say he was moving into the light.  Eyes locked together, that last night I fed him bits of chicken by hand when he was having trouble eating, stayed up with him in the early hours.  Bleary-eyed I went off to a meeting in London the next morning while my husband brought Noel to the vets. He was going to be escorted to an animal hospital for tests personally by the vet, who loved him too.  He died 15 minutes after my husband left.  Noel needed to be alone to let us go.  Just like my dad.

I was in a room full of medical professionals who were discussing FASD at the Royal Society of Medicine when the urgent calls and texts came. These were some leading academic experts on intellectual disabilities, but the thought flashed through my mind, could they understand this? I greatly value their insights but there is no way a book could teach this – the unquantifiable, sometimes inexplicable reality of the ups and downs of life for those living on the FASD spectrum and their families. The tectonic plates had just shifted in our little one’s world. I had to get back before our boys came home from school.  I left the experts to their PowerPoints.

Oh, what a heartbreaking conversation as our little one’s world crumbled. As he locked himself in his room blasting “The First Noel” over and over and over again.  As he called on the genies to make the wind swirl backward in a reverse tornado to bring him back.  As he panicked about whether Father Christmas might be angry that the Christmas Dog had died.  When he alarmingly said he wanted to die and go to heaven to be with Noel.  When we realized he was blaming himself, thinking Noel’s stealing of a forbidden piece of toast with cheese that had been left down low a few days ago might have brought this on.

The next day he once again used a Noel voice to say it’s okay, he had found Grad in heaven, he wasn’t alone anymore and he wouldn’t leave his side.  That he had found a whole field of Greenies (his favourite treat).  Our son was thinking abstractly, and Noel was helping him still to find his way forward. But there is a hole, a huge gaping hole in our little one’s world. It’s one thing to say that love never dies, but another thing entirely to process it.

We are a family that believes in Christmas magic.  While initially we were thinking it would be better to wait before finding another four-legged companion, we realised that due to our son’s perseveration, the way he can sometimes fixate on things, this space needs to be filled.

And, wouldn’t you know it.  A sweet puppy named Joy (I am not making this up – I couldn’t make this up) is coming into our lives in a couple of weeks, right before Christmas. She is traveling to us from Bulgaria.  Another adoption. Father Christmas wasn’t mad at all.  He knew.

Yes, we needed a certain kind of dog to get us through these past four years, and we had the best.  Sir Noel, The Christmas Dog’s love for us and his faith in us was transformative.

But that isn’t the end of this story.

Joy will follow Noel.