Christmases Past, Present and Future: An FASD Story

Blog Christmas Past

By SB_FASD

One Christmas stands out in my memory. Dinner at a relative’s was running late, the turkey wasn’t yet done but the house was filled with the sights and smells of Christmas. Our guy was three years old, maybe four. The sparkling tree had these round glass balls that spun when he touched them, he was drawn to them. I couldn’t keep him away. I feared the whole night he would break them. Relatives were full of consternation. Or at least that’s what I felt. There were piles of presents he wasn’t allowed to touch. Everywhere he moved he was met with a ‘no.’  I remember taking him in my arms to the stairs. We sat halfway up, me holding his squirming, screaming body tight, like a pro wrestler. Hoping for that moment’s release of tension that often came after a deep bear hug. I couldn’t have told you then why he was in this state. I just knew I wanted to leave, to take him home. But we didn’t. Couldn’t. Wouldn’t. Even now, a decade later, that Christmas haunts me. It was nobody’s fault but he was miserable. I felt defeated.

Too many other past Christmases flash through my mind. My own trepidation. His distress. I felt unable to understand why these days were not fun and full of the magic I felt at Christmastime as a kid. This was my favourite time of the year. My mother made it all so special. I felt like I was failing as yet another toy was broken in nanoseconds on Christmas morning, as yet another moment spiralled out of control, as yet another Christmas day was endured rather than celebrated.

Don’t get me wrong, we did have moments of wonder. Visiting Father Christmas. Tracking his journey. Hanging stockings. Carrots for the reindeer. Making paper chain decorations.

Putting up decorations could descend into a horribly tense time. Chaos and confusion. Tears. That sinking feeling would start to grow in my stomach and not leave until the decorations were put away. I felt Scrooge-like.

We didn’t know then. We didn’t understand. It was years before our guy had a diagnosis of FASD. I had no clue the very many ways all this was confusing him, causing him to be overloaded with sensory and cognitive input. I didn’t know why this was happening.

Flash forward to this year, Christmas Present. While he was out of the house one morning, I quietly put up only about 1/3 of the decorations we have, focused mostly in just one room. I put lights on the tree but left one box of decorations in the living room, too tired to finish it all. Later, when I wasn’t home, our now 15-1/2 year old son decorated the tree quietly, on his own. My husband said he just started to do it, so he let him get on with it. This never would have been possible before. My heart swelled three times when I saw that tree trimmed. It felt like something major had happened because it had.

This year our son only produced a Christmas list on Christmas Eve for Santa. Luckily Father Christmas had known our youngest had been waiting for a DMX controller for his growing stage light collection. If you’ve never seen one, it is an intimidating looking board with slider controls and buttons to manage different lighting effects. (Last year his main Christmas present was a moving head light, so yes he’d been waiting a year for this.)  Father Christmas knew that DMX cables were needed. But things in the North Pole are a bit behind technologically and he didn’t know you also need a terminator to plug into the last light in a chain of lights that allows them to each be controlled independently. So, of course, these lights were not doing what our son had waited a year to be able to make them do. We discovered this before heading to his grandmother’s for Christmas dinner.

We arrived just as dinner was going onto the table. We have agreed this timing over years – so there is no more waiting around for hours, staring at presents. This year our guy didn’t want to sit with us to eat. He had a game to play in the hallway on his own. We occasionally put a little plate of food next to him (that he didn’t touch-he didn’t eat real food for 3 days over Christmas). No one commented. He joined us at the table for Christmas crackers. After the meal, our immediate family of four quickly gave and opened our own presents and left the rest of the extended family to open all of theirs while we were not there. Theirs is a whole-day event. We are only there for a few hours of it. His older brother ‘gets it’ and helped us identify when things were possibly starting to fall apart.

Back home, it became obvious our guy was now stretched to his limit. Even though we’d arrived late and left early, we had stayed too long. He was overtired. Overwrought. He was frustrated he couldn’t make the stage lights work as he wanted. He started swearing, saying they were rubbish and he wanted me to take them out. All of them. And the DMX control board. I started to use my calm voice, telling him he’s ok. But he kept insisting I take the lights and board out. He started to throw things. I stopped talking over him. I listened. I took out all the lights and the treasured DMX control board.

I had realised he didn’t want to break them.

I was so proud of him in that moment.

Once these had been taken from the room and I left him alone, things calmed. In Christmases past this whole scene would have ended with a smashed-up room.

He has learned to tell me what he needs. I have learned to listen. Only perhaps 2 or 3 things had been impulsively thrown. The scene de-escalated quickly. Nothing was broken. In this entire month, it was the closest we had come to those old hard days. And within 10 minutes we came out of it without any major problem. A tech savvy friend came to our aid on Boxing Day, showed him some fundamentals about how the board works, and told us about the missing terminator thingy, which we have ordered and will arrive by New Year’s.

During Christmas Present I have felt more festive than I have in years. Why?

  • We have simplified these holidays.
  • We have learned to listen to our son as he tells us what he needs. He has been helped over years to identify what he needs.
  • We have stopped insisting he sit through long meals full of foods he doesn’t like.
  • We have helped extended family understand his brain works differently and over time they too have changed their expectations of how we will participate in the holiday festivities.
  • We have come to peace with the fact these holidays are different from what we used to have when we were kids.
  • We have opened up and slowly built a wider network of support around us, so we have a core group of friends who ‘get it’. People who can come to our rescue when needed as our friend did on Boxing Day. He knew.
  • (We also have taken out full insurance on every electronic item for years now, and that relieves great stress.)

I also feel more optimistic about Christmases Future than I have in a long while.

I wish we could go back in time. I would cuddle that confused and overwhelmed little one. I would take him to someplace quiet. I would have gone home when I knew he needed to leave. I would follow my mamma bear instincts and do so much different, even as we had to also ensure that the day was magical for our elder son. There were ways we could have done things so much better, had we known. But we didn’t know. He was undiagnosed. We thought he ‘had to learn.’ And I’m not saying this Christmas was perfect, I still needed a day basically in bed binge-watching sappy movies to allow myself space to recover. But I did. Because I know what I need now too.

I see in support groups so many parents have struggled and are still struggling this year. I get it. We have been there. There were too many Christmases that ended in tears, shouting, frustration. I am still there in some ways – still hypervigilant and expecting things to explode. But they didn’t this year, not really. And I have great hope for Christmases Future. I see the progress we are all making. Over time huge changes are possible with the right support, the right school, better tools, individualized targeted strategies, with insight that draws us back constantly to the fact that FASD is brain-based and these bewildering behaviours are not intentional. I am so pleased with the great strides we have made as a family. They are hard-earned and deserve to be celebrated.

I am so intensely proud of our son. The tree decorator. The DJ. The light master.

Despite it all, despite all the failings I still feel over Christmases Past, our young son’s continuing belief in the magic of Christmas inspires me to be a better mum, a better person. Progress is possible. And I believe with every ounce of my being that Christmases Future – indeed the entire future – can and will be even brighter.

****

P.S. – This isn’t all about mums, see also:  Father Christmas Finds it Hard (2017)

25 Years After My Mom Died

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By SB_FASD

It happens every so often that Mother’s Day in the USA coincides with the anniversary of my own mother’s death – May 12th. That time – I think it’s a quarter century ago now – is a blur to me. The years were traumatic, infused with much pain and suffering. My father and my mother had long-term horrific illnesses that wove throughout my early twenties. I don’t like looking back at those years, though I cherish the love. Life becomes very real when we stand with loved ones at the edge of death. If there’s any good from their early deaths, it’s that I gained some perspective I might not have had for decades.

I am forever grateful my mother was able to drift away on a spring breeze. She took her last breath at home right there in front of my eyes. I was holding her arm. I could feel the moment my heart kept beating when hers stopped. I shared that pulse in her womb and in her death. I have no doubt that it’s my job to carry her heartbeat into the future. Her strength. Her clarity.

I think of my own imperfect motherhood. I think of how we all, even the best mothers out there, are really just getting by without rulebooks, without much more than our love and our faith in brighter days to get us over those hills, out of those valleys. That certainly is true in this house affected by FASD.

My mom came from a big Scottish-American family that lived hard, played hard, loved hard and fell hard. My grandmother had 17 pregnancies – 9 children lived (8 girls, 1 boy). Alcohol and addiction flow through the generations.

I was just lucky, really. I don’t think in my young student and professional days I understood just what fire I was playing with when I was out binge drinking with my buddies.  It took me decades to shake off the habits I had learned about what defines ‘a good time.’ But I did. And I am proud of that.

I wonder what my mom would say knowing now what we know about alcohol, pregnancy and the impact it can have on lives. I wonder what she’d say about my career switch into this whole new issue area.

She and her sisters drank and partied through their pregnancies. Even so, I think she’d get it. She’d recognise those tell-tale behaviours, challenges, outcomes that we now know can arise where and when there are undiagnosed Foetal Alcohol Spectrum Disorders.  In every neighbourhood, every community we all know people who have struggled, spiralled, become addicted, lost jobs, had mental health issues, suicides. It’s heartbreaking and tragic that some of these may be due to FASD that went unrecognised.

One time when my mom was in hospital, I was with her as she rolled her chemo bag to the doctor’s smoking area. Some tired surgeon was there, having a cigarette after a long day. My mom took a long drag, blew out the smoke and then eyed this unsuspecting man directly. “I know what my excuse is,” she said, “but how the hell can you stand there and smoke that with all the education that you have?” I was used to my mother’s frankness, but even for her this was spectacular. I will never forget the truth of that moment. The doctor just locked eyes with her. He threw his cigarette on the ground without a word and went back to his work.

I think she would approach this whole issue of alcohol in pregnancy in the same way.

She’d want us to be straight up. You can’t look into the eyes of someone with FASD and be the same again.

Now that we know, no more excuses. Even if and where it hits close to home.

There is no point sugar-coating the facts:

  • Alcohol in pregnancy risks FASD.
  • FASD is lifelong.
  • No mother wants their child to face the kinds of permanent challenges that can arise when developing brains and bodies get seared by alcohol in the womb.
  • However, if a child has been exposed to alcohol in utero they must get diagnosis and appropriate support to help them grow into their potential.

On this US Mother’s Day, which I believe may be 25 years after my own imperfect but beautiful mother died (I can’t remember exactly), I am contemplating again how complex and yet how simple these issues can be at the same time.

The reasons why people drink during pregnancy, including genetic, social and cultural reasons, are long-standing and can be intergenerational. It’s not easy to break the cycles, to see the problems. Sometimes women need significant scaffolding and supportive programmes to help them – such programmes exist but are not nearly as available as they should be. But for many, they just see this as a ‘personal’ choice, a ‘right’. I know people who still question whether FASD exists.

Many, many of us have undiagnosed FASD in our extended families. Maybe in our own homes. After all, it’s a spectrum that experts believe affects more people than autism. Nobody wants this to be about them or their family or their classroom or their patients. But it is.

Stigma suffocates the discussion, fuels the misdiagnoses.

I am not a perfect mother. I did not have a perfect mother. But like her, I love hard. And I try hard. And I miss her. We all try each in our own way to do the best we can in the absence of a rulebook.

But on this issue the rules are now clear.

  • If you avoid alcohol in pregnancy or when trying to get pregnant, your child will not have FASD.
  • If you are drinking alcohol and having sex, you should use birth control. (You should be using it anyway, my feminist friends, unless you are planning a pregnancy.)

I just keep thinking about that question my mom asked that surgeon smoking a cigarette. “With all your education, what is your excuse?”

You can’t un-know something, though you may put your head in the sand.

We can do more to get the word out. But it’s got to be also an internal acceptance too. This isn’t about those ‘others’. It’s about all of us.

It’s about moving beyond shaming and blaming and accepting that it’s quite possible that we know more people than we think we do who are living with the impact of having been exposed to alcohol in the womb.

The medical guidance in the UK only changed three years ago. It’s not like anyone ever purposefully sets out to endanger a pregnancy. But we have to accept the risks are real. We have to accept that no matter what our income or education level, no matter if we drink pink gin, prosecco or cheap lager all alcohol is at the end of the day a potential poison to a developing embryo or foetus. We have to accept that in our communities thousands upon thousands of people are living with the effects of that exposure, undiagnosed, unsupported and struggling through their own lives. If we opened our eyes to that reality, we could put in place supports that can change their trajectories. It’s the understanding of the condition that can lead to brighter futures.

Unlike that surgeon who was smoking in the face of a woman dying of lung cancer, when a pregnant woman drinks alcohol it’s not just her own health that is at risk. She has to think forward and imagine looking into the eyes of an infant that might be inconsolable, a toddler who is delayed in learning to walk and talk, a student who can’t keep up, a teen who is overwhelmed and unable to cope, an adult struggling to hold a job. She has to understand the power of putting down that glass, to know that it’s always better to stop at whatever point in the pregnancy because the baby’s brain is developing throughout.

Paraphrasing Maya Angelou, when you know better, you do better.

It’s time now for us all to do better. You can’t un-know what you now know.

And that includes every single medical, educational and care professional, including those who resist getting themselves trained up on this issue, those who spread misinformation and deny people the diagnoses, help and support they need because deep down they too play into the stigma.

I’m asking for my mom, “What exactly is your excuse?”

A couple of days ago, there was a game-changer. An announcement from the Department of Health:

Department of Health and Social Care have got confirmation that NICE will be developing a Quality Standard on FASD based on the Scottish SIGN guidelines. NICE, working with key stakeholders will develop a work programme to help them deliver this over the coming months. This is welcome news as a step to help improve diagnostics and the clinical pathway in England on FASD.”

What this means is that the FASD-deniers will no longer will have any excuse. And that my friends, is huge. Change is coming.

The Run Up To Christmas is Difficult for Children with FASD

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By MB_FASD

Christmas is coming, the goose is getting fat …. And sadly the period of greatest potential for multiple meltdowns with it.

The run up to Christmas is a really difficult time of year for children with an FASD. Schools go off timetable, so routine vanishes. Excitement builds as the holiday approaches. Multiple events pile up, one after another, in a confusing and seemingly relentless fashion.

Kids just cannot cope. Their senses can be overwhelmed every time they go places with lights and music. Kids who find it difficult to assess time can struggle with the weeks and weeks of special events, wondering why Christmas hasn’t come yet.

Worse, children who struggle to comply with all that is required of them in school, whose symptoms are treated as bad behaviour at the best of times by those who fail sometimes to even recognise that they even have life-long organic brain damage, find themselves wondering if Santa understands they aren’t being naughty and whether they’ll get presents because so often they are told they are being bad. And bad kids don’t get Christmas presents.

So, even where our youngsters manage to hold things together outside the home, very often this time of year brings an increase in meltdowns, school refusal, tears, sometimes increased violence and angry words. Friday night this week brought a broken phone screen as frustration built up, with concern about spending next week off timetable a real factor.

Things become very fraught for all. It can have a horrible effect on families, and for extended families who don’t get FASD it can be completely inexplicable. Accusations of bad parenting can fly, which just increases tensions and perpetuates the cycle of misery.

So, how to avoid this so far as is possible?

Well, it isn’t easy. But there are ways to reduce tension, ease anxiety and make Christmas and the New Year easier to get through.

We start from the point that we know our son best, and from experience understand what we need to do to help him be able to get through each day. We listen to him, and this has got easier as he has got older and is able – at least sometimes – to tell us what he needs in words to be calm and happy.

We build Christmas and the New Year around him. We do everything we can to lessen the sensory burden. We do everything possible to reduce stimuli and anxiety. We recognise our son’s disability and the needs this means he has. We give priority to meeting those needs.

This means we miss out on things. If he can go to the pre-Christmas carol singalong, then we go. He does enjoy it (he loves singing) when capable of accessing a crowded public event.

We do decoration to the extent he can cope with without becoming agitated, and when he can manage it. Sometimes that means lots of decorations, sometimes relatively few. A couple of years ago he wanted to keep the Christmas tree in the living room all year long. So it stayed (he was right, it was kind of pretty). We had already bought an artificial one as he became extremely anxious as time went by and needles started to drop.

Presents only appear on Christmas morning. Temptation would be too much if they sat under the tree for longer. Which means we stay up very late to make sure the kids are asleep as we await Santa’s arrival. One Christmas a sleepy older neuro-typical son appeared at 1.30am, just as Father Christmas was finishing. Luckily he was so tired he could be guided back to bed or we might well have had presents in the middle of the night. After all, Santa had called.

Christmas is for kids. In this case, we build Christmas Day around our son. Presents early. The kids can stay in pyjamas and play with toys and games. No pressures at all. Food and drink can be eaten where they play.

We do go for lunch and family presents with family. We’ve learned over the years that we need to keep this shorter than we otherwise would. And if our son needs to be in another room listening to music or playing on his phone, then that’s where he is. He can’t manage to sit in a crowded room for a long time, or stay still for so long. It’s better for everyone when we accommodate his needs.

In the end, it’s simple. Do what you know your kid needs to get through the holidays happily. Cut everything else out.

And while this is about children with FASD, it’s much the same for adults with FASD – they too need accommodation, support and understanding. Inclusion is more than just inviting someone along. It means helping to ensure all are able to access and enjoy the fun.

Wishing everyone happy holidays and a wonderful 2019.

****

For some great advice, see this video, “Hark, the Holidays Approacheth! (Preparing for and Avoiding Behaviors During Holidays)” from Oregon Behavior Consultation.

Our Nine Million Moments of Marriage

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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.”

 


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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Food in an FASD Family

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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.

Raising a Child With FASD Has Made Us A Stronger Couple

Blog_BirthdayCard
By SB_FASD

Today is my husband’s birthday. He bought his own presents.  He didn’t wake up to coffee in bed. There was nothing – I didn’t even manage to wrap the presents he had sent to himself via Amazon.  Really, it doesn’t get more pathetic than this.  But I have my excuses.  We were at the school yesterday for a couple of hours.  Our son has been home half days because he is struggling in this post-operative week.  As a result, we have been juggling work commitments, balancing the needs of our elder son (who has Chronic Fatigue Syndrome/ME), and – I kid you not – a dog with a concerning cough.  Life is – as usual – happening fast and furious. We are as ever facing our days left-footed.

I explained to my husband yesterday that I needed more time to wrap things, that I hadn’t actually managed to do anything to make his day special.  He smiled at me and gave me a hug.

That’s when the thought struck me – this FASD journey affects our expectations of each other too.  We have all had to change the way we look at this world.  It is not just about changing how we interact with our son with FASD.  It is also how we interact with each other.

FASD has been brutal on our marriage.  The unpredictable flare ups.  The chaos.  The what-on-earth-do-we-do-now moments.  The concern.  The defensiveness. The tiredness.  The stresses. The depression.  The alternating moments of determination and fatigue.  The feeling that whatever we do is never quite good enough.

The times when we have entirely different instincts on how to handle a situation.  The times when we hit a wall and need to shout, and rather than yelling at a little one, we aim those words at each other because that’s the ‘best’ option in a horrid situation.

Yes, FASD can tear at relationships.  Like water dripping on solid rock, each of these tense moments leaves its mark even on the strongest of relationships.

And yet, here we are.  We’re still standing.  Somehow.  And we are better than we were before.  Perhaps not as obviously shiny and happy as we once were in those days when we were courting.  We were an older couple to start with.  Maybe because we weren’t kids ourselves, we have always been grounded.  Though once upon a time we were carefree enough to hop on airplanes with the blink of an eye to meet each other, to visit others.  We had flexibility and funds.  We were living the life.

Children were a precondition.  I remember standing on a bridge early in our romance, laying it out – saying although it was awkward – that I had to know if he saw children in his future.  I was in my mid-30s.  I was confident enough not to delude myself that this was a question that could wait.  I will never forget the feeling of elation I had when I realized he too wanted children, a family.  We were engaged soon after.  We even talked about adoption at that point (before we had trouble conceiving our first child, including a horrible possible ectopic pregnancy/miscarriage, before the frustrating infertility when it came time to try for our second).  My husband is adopted.  I always said I would adopt one child for every child I gave birth to.  It seemed natural for us to complete our family via adoption.

We had already decided we could raise a child with disabilities when we refused the tests during my pregnancy, despite knowing we were in a high-risk category.  We didn’t shy away when we realized early on that our adopted son was likely to have developmental issues.  We knew, or thought we knew, what we were getting into even if it would take several years for our son to be diagnosed with FASD.

But did we know then how our social life would erode?  How those lovely meals out and trips to the movies, to the theatre would evaporate?  Did we know we would be so bone tired every night we could barely decide which TV show to put on, forget about long meals laughing over candle light like we used to?  Did we know that we would stop traveling together, that our health would deteriorate, that we would take such shortcuts with each other?

There was no way we could have known.

But I am not writing this as a downer.  I am writing this because of the beauty of the moment yesterday, when I told my husband I hadn’t managed to get him a card nor had I even wrapped the presents he bought for himself for his birthday.  That moment when he understood.  That closeness that we have that goes beyond the flirtations of a night out on the town.  That hug by the coffee pot this morning when he jokingly asked where his presents were.

We have always said that we will be great sitting in our old-age rocking chairs side by side, making snide remarks about the state of world affairs.  We are becoming people, through this journey, that we never knew we could be – deeper, more ‘real’, more compassionate, more questioning of ourselves and our expectations than we might ever have imagined.

We have been washed over by a love that is stronger than we could have envisioned – fierce in its protectiveness of our children.  We have learned as a couple to find sustenance in the awe that we share of our two amazing children who show us every day what courage is, what it means to face this world bravely and with dignity.

As a community we probably don’t talk enough about the toll that FASD can take on family relationships and on marriages in particular.  I am writing from the perspective of adoptive parents, but every single family relationship can be stretched – especially if FASD is not understood, if the strategies are not taken on board.

It isn’t easy, but we are better people together and individually because of this path we are walking.  Our marriage is stronger for this journey.  We make accommodations every day, not just for our son with FASD, but for each member of the family.  In learning that patience and compassion, hopefully we are growing into the kind of adults we always wished there might be in this world.

Happy birthday to my better half.  Maybe I didn’t get you a card, but here is a blog post instead.

A New Year’s Resolution on Parenting and FASD

New Year's Resolution rev

By @SB_FASD

I will view my child with love, understanding, and calm.

I will treasure each smile, each giggle, every moment of kindness.

I will hold onto his innocence and celebrate the beauty within him.

I will help him grow and learn—gently, creatively, perpetually.

I will help him better understand himself more fully—his brain and his heart.

I will feed his senses and help his neural networks make new connections.

I will give him space to be okay, to find himself.

I will hug him tightly, he will know the reassurance of my hand on his shoulder.

I will not intimidate, if I need to shout I will do it where he cannot hear my pain, fear, or confusion.

I will see the whole person, beyond the behaviours and defensiveness.

I will remember the joy of first holding him and I will look at him with love.

I will soothe his anxiety with my certainty.

I will know how much I matter to him, we matter, our love matters.

I will help him find his voice.

I will help others understand that his disability does not define him.

I will hold his hand, forever, and I will be there to catch his tears.

I will not give up.

I will look after myself so I can meet his needs.

I will build up others around us, not tear them down in my frustration.

I will understand that every family member has their own journey to walk.

I will find the fun.

I will play. I will blow bubbles and splash in mud puddles.

I will look every day to make sure those lovely eyes sparkle.

I will welcome each new day, each new moment.

I will not hold a grudge against him or against fate.

I will know his words don’t always come from his heart.  I will brush them off and refuse to let them create division between us.

No matter how bad the meltdown, I will be there when it passes, to reassure and to move forward.

I will grow too.

I will be patient.

He will teach me, and I will listen.

I will treasure the sweet moments and new beginnings.

I welcome this new year.

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Note: This post has been updated on 2 January 2019. NOFAS-UK created some affirmations graphics based on this post. They can be shared from Facebook here. A brief slideshow video of some of these graphics is available here.