Airing Dirty Laundry

DirtyLaundry

By SB_FASD

I know I’m weird. I have never really minded doing the laundry. I was taught early and well to take great satisfaction from jobs with clear results. It starts off dirty. A few steps and voila! It’s clean. I can see the proof that I accomplished something. In fact, few things are more satisfying than seeing clean-smelling, neatly folded, bright and tidy clothes tucked into drawers, everything crisp and orderly – proof of course that I am a Good Mum.

I know you can see where this is going.

In our house, thanks in large part to FASD (though, to be fair, not entirely due to FASD), laundry is not that simple.

First, there is the volume. A sensory-seeker who loves mud and slime, who might chew on clothing when under stress, who spits out foods that his body rejects and who might not be able to contain the need to wipe a runny nose until finding a tissue naturally generates massive amounts of laundry. There are up to four changes a day due to continence problems that arise from food allergies and other issues around digestion/food, generating laundry that needs to be addressed daily and urgently and without shaming or blaming.  There are of course also favourite stretchy tops and soft trousers that need to be nearly always available.

I try to keep a smile, even as my heart sinks watching the stack(s) of laundry grow.

Attacking this gets complicated.

Our son has some autistic-type traits directly related to his FASD – damage caused to his brain by exposure to alcohol in the womb. He has always had a very special and intense focus on washing machines. I get it, I really do. What’s not to like? The whirring and spinning, bubbles and sounds can be soothing and captivating. Our guy used to sleep in a pushchair parked in front of washing machines (which in England are front-loading and have glass windows).

His interest has deepened. He has become an expert of sorts by watching endless hours of YouTube videos and playing with his armada of toy washing machines which he has begun taking apart and putting back together again with varying success. When he goes to one of his favourite destinations – Currys – he discusses the technical specifications of most top brands with the staff. Armed with that kind of knowledge, he gets nervous and anxious when our ancient washing machine at home rattles a bit in the spin cycle. He worries it is ‘unbalanced’. If he sees a ‘suds lock’, his anxieties erupt if we don’t shut down the machine. He pleads with us to buy a new one. He knows which will fit the space we have.

Once upon a time I might have thought I needed to help him ‘get over it’ – to push on with my own schedule and just do the laundry despite his anxiety.  But we are the ones who had to learn. FASD is brain-based. To make it more likely that he can cope with even seemingly mundane things, we have to adapt the environment. In the FASD community this is a bit of a mantra, deriving from the ‘neurobehavioural’ approach made popular by Diane Malbin.

So this raises logistical issues related to timing – if we do laundry when our guy is slightly dysregulated, overly tired or anxious it may lead to a meltdown (although the line is never exactly clear, as sometimes watching the machine can help soothe him).

Then there are practical issues – we need to hang the laundry to dry. Given England’s usual wet skies, that means this laundry is hanging on drying racks in our dining room – making the spaces more chaotic than they already are, which is not ideal for someone with FASD. It also limits the number of loads we can do on a given day (our dryer, never overly cooperative, has died.) On a given day you are likely to see half of our dining table covered in folded laundry.

Which leads us then to the storage issue. Our guy cannot organise himself. His most used clothes are in plastic crates so he can see them and access them. When he looks for something, it all gets jumbled. I could be angry about this, but there’s no point.

Others might think I am enabling ‘bad habits’ by not forcing him to clean his room himself. But while he may be 13, like many children with FASD he has a social/emotion level of about half his age. No, I have no intention that our son will always have a room that looks like this. But in a world where getting him to school and keeping his anxieties down are the top priorities, I have learned over time to priortise my own goals. Of course, the tidiness of his room matters because it helps him to be in a calm and orderly space. We do try to keep it somewhat manageable for that reason and I take lead responsibility on this, but not so I can fulfill my maternal dreams of nicely stacked, sweet-smelling laundry. I do it for him.

But in the end, who cares about our laundry? Why am I writing this?

I believe that alternative parenting needs to be better understood.

People need to know there are layers upon layers of complexities to parenting in houses affected by FASD.

It’s important to look a bit deeper when someone is parenting in a way you find so outside of your box that you are tempted to criticise. You might just see some magic happening.

Whether or not I chastise my son for tossing his socks after he takes them off, whether or not I turn a blind eye to that smear on his sleeve, whether or not I allow a stack of soiled laundry to grow in the bathroom and wait until our son is asleep or out of the house to do the laundry – these are choices based on strategies that might not be apparent to the casual viewer. Of course I see these things and yes, despite the above, I still suppress guilt every day about it all. I do want to be a perfect mum. I do want my house to be perfect – or at least, non-toxic. I admit it, I want stacks of nicely folded sweet-smelling laundry to be IN every drawer in our home.

A little while ago, my son reminded me some clothes in the washer were done and needed to be hung to dry. The he asked if I had any laundry he might do. We agreed he could wash a sheet from his bed. After he loaded and started the machine, he came to me and expressed concern that there might be too many suds. I told him if that made him anxious he could go to his room and I would watch the machine for him. He did. He went and got himself changed and dressed (he was also making slime and has a cold, he realized his clothes needed changing). Most ended up in designated piles. He is content. We have had no meltdowns, no harsh words.

Perhaps to the outside world none of this is remarkable. But in that last paragraph there are many positive signs for the future. During my first week of university I met a man from a large family who had never used a washing machine before in his life. My son with a learning disability knows how to do this at the age of 13. He expressed to me his worries, we agreed a strategy for how to deal with them and avoided the worst outcome of a potentially spiraling situation. There can be glimmers of huge progress in the simplest of things, when we stop to see it.

We can’t change some things around here. But we can change how we react to them. We can adapt and learn how to support our son via his interests to become as independent as he can be. We have had to step right outside of that box of expectations that we had ingrained within us and we have allowed our concept of parenting to expand. We are learning to give it time and patience. We are trying to have more fun along the way.

It really doesn’t hurt anyone or anything to indulge our son in an extra spin cycle or two now and then. Who knew?

He did.

He’s been showing us all along what he needs.

 

 

 

 

 

 

 

 

 

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Take Care

Blog_TakeCare4

By MB_FASD (and a side note from SB_FASD)

And so, from hour to hour, we ripe and ripe.
And then, from hour to hour, we rot and rot;
And thereby hangs a tale.
(As You Like it, William Shakespeare)

I like a good Shakespeare quote, and this one fits the circumstances of the past couple of weeks, at least for me.

Parents and carers of kids with FASD are busy. So busy. There’s never enough time. There just isn’t. For us, when you aren’t dealing with the day to day, then there is the relationship with school to manage, or appointments at the doctor, a seemingly endless round of trips to one hospital or another, from therapist to counsellor, from consultant to nurse. Even the extra loads of washing take time.

The supervision of the day takes a huge amount of energy, and at almost any time, a meltdown can bring everything to halt for hours while we help our young man to re-regulate and things can get back to (FASD) normal.

When you combine all this with work, the rest of the family and everyday life, time is squeezed. There just aren’t enough hours in the day. So things slide. Sometimes important things. That’s what’s been happening to me. I let things go by that I should have been noticing, or I did notice but didn’t pay attention to. My wife worried at me to look after mysef, to get some checks done. And I brushed her advice off.

Sinking into the sofa exhausted at the end of the day, every day, had become my normal. Having a little afternoon nap had become normal. I got extremely thirsty all the time. I felt below par every day. This was my normal. And I wrote it off to the stress of living with a child with FASD (and another with chronic fatigue).

I did nothing.

But, it came back to haunt me. Just like the advice on the aeroplane, if the oxygen mask falls then put your own on before trying to assist others, I should have been taking care of myself.

A couple of weeks ago I went to the doctor complaining of a persistent cough, which had lasted since a virus knocked me flat in February and triggered my asthma. She asked a lot of questions, and sent me for blood tests and chest x-rays.

Fast forward a few days and the doctor’s surgery calls and tells me to come in that morning. An hour later she tells me I have Type 2 diabetes, and after discussion, I have probably been in an acute phase of the condition for at least 18 months. Looking at the blood sugar results she tells me it’s ‘a bloody miracle’ I’m not in a coma.

Later, with the diabetes nurse, she shows me how to use a blood sugar testing monitor. The result is too high for the machine to read – it just says “HI” on its little screen, meaning my blood sugar is over 33, when I’m aiming for 8! For good measure I need to get my cholestorol level down. And lose a bit of weight, although I’ve lost two stone since the doctor last weighed me as a result of the untreated diabetes.

Back home, my diet changes immediately. Gone are the carbs, salty and sugary items that made up a lot of my diet – and that includes the grapes and yogurts I was eating a lot of. Convenience eating is a thing of the past. Everything is measured, considered and prepared from scratch. My wife is delighted about this bit, and a Mediterranean Cooking for Diabetics book appears immediately. She gets to cook all sorts of things she loves!

Two weeks on (with the help of some meds) my blood sugar is low and relatively stable. I’m learning to live with diabetes and starting to feel better. I’m not getting up two or three times a night to pee. I’m feeling more rested from a night’s sleep. I’m less prone (I think, check in with my wife) to being irritable because of fatigue. Things are on the up.

This means more energy to deal with the things that life throws at you. More energy to look after our son. I’ve started taking care of myself, and it means I am in two short weeks, better able to take care of him.

And that, in a nutshell, is the moral of the story. Take the time to take care of yourself, so you can take care of the others in your life. And how necessary is that when you have a young one with FASD in the family. They need you to be at the top of your game. Every day.

Listen to your body. Act on the signals it sends. Try not to “rot and rot” as the bard put it.

Take care.

*********

A note from SB

I knew he was sick. He says I “worried” at him. It was more than that. I knew what I was seeing, my father had diabetes. Combined with high cholesterol and heart issues, diabetes took my dad’s foot and contributed to years of very bad health leading to an early death.
 
I was scared by what I was seeing.
 
And yet, the days and weeks and months and possibly years passed. I cannot tell you how guilty I felt when I realised not just that he has diabetes, but how serious it had become.
 
Because of FASD, we are faced every day with the kind of in-your-face urgent issues that cannot be ignored. Of course we are tired. Of course we are snappy with each other. Of course we feel down. Of course we take short cuts. Our interactions have been curt and far from the hours-long discussions we used to have about issues big and small. I felt he was being selfish by not looking after himself. I felt he was whinging. I grew up in a “if-your-cut-hand-is-not-falling-off-keep-playing” kind of large family. I had told him (repeatedly, and even in front of his mother a couple of times) what I thought was wrong. If he chose not to act on it, I was not going to nag. 

Except I didn’t grant him, my partner in this life, the same courtesy I grant to our child with FASD.  I never thought he was as badly affected as he is and that a medical condition might be underlying behaviours. I nearly cried when one of my sister-in-law’s friends who has diabetes said that she had never heard of anyone having readings as high as his and that this must be making it really hard for him to control mood swings. I didn’t for a second imagine his outbursts that threw me through the roof myself might actually be due to blood sugar swings. I didn’t think his behaviour might be a symptom too – and that is the mantra of FASD parenting. I should have trusted my lovely husband enough to see this for what it was.
 
I feel guilty.
 
Deep, deep guilt. 
 
I am surrounded by people who have medical conditions that are demanding. Diabetes. FASD. Chronic Fatigue Syndrome/ME. I am certain the stress we all live under is playing a negative role in all of this. I myself was in hospital a couple of years ago with neurological issues.

This life is not easy. There’s no outlet, no fun, no release. Or at least we don’t prioritise finding ways to lighten our load. I always feel there is more I should be doing. And now I need to learn about carbohydrates that convert from sugars and figure out how to integrate new foods into a home where one of us has major sensory issues related to food. I am a short order chef these days, making multiple foods. More pressure. (Yes, I bought the Mediterranean Cookbook for Diabetics, sure, but I have yet to read it.)

The pace is relentless. But if you are reading this, most likely you are familiar with it.

We are not alone. I know of too many individuals and families coping with FASD where the stresses drive peoples’ health into the ground, where relationships get torn to the point of no return, where depression takes hold. 

We have to do better. As my husband says above, we have to “take care”.  We have to take care of ourselves and we also have to take care of each other too…maybe a bit more aggressively than the British culture is comfortable with. Maybe we need to force those difficult conversations. Lives are at stake. This isn’t optional.

I am glad he caught this before worse harm was done. I am thankful it’s something we can manage. He didn’t mention above that they also were screening for cancer at the same time. There is a reason why we haven’t posted a blog post in a little while. It’s been quite a ride around here lately. 
 
…now, where is that reminder about the smear I was due for ages ago…?

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Crunch Time – Beyond Broken Doors and Dreams

Blog_CrunchTime

 

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.

 

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

Blog_Cold

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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Food in an FASD Family

Blog_Food

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

Blog NoGoingBack

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

Blog TrustJoy2By 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

Blog Father Christmas loves a teen with FASD

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.

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.

Mother enough?

Blog Mum enoughBy SB_FASD

Am I mother enough for this day?  Have I strength enough, humour enough, patience enough, faith enough in those around me?  Today our little guy is going to have his hand operated on by one of the UK’s top plastic surgeons.  He is having a ‘web release’ and Flexor Digitorum Superficialis (FDS) Opponensplasty done on his right hand, the hand he cannot use because – as he says – ‘it’s rubbish’.  The hand with the thumb that doesn’t work properly because while he was in utero alcohol washed through his developing system and damaged the joint so badly that his thumb does not extend properly.  Every time he tries to open something, he has trouble.  Every time he tries to do a button, he has trouble.  Every time he tries to hold something with that hand, he has trouble.

They can’t do anything to the bones.  (We were told by an orthopaedic surgeon that he is in fact lucky to have any joint there at all, which may be true but it’s still less than okay.)  Since they can’t fix the irreparable damage to the bones, this plastic surgeon is going to move tendons and work her magic to (hopefully) give him more range of motion, more strength.

Our son is 13 years old now.  He woke up this morning hungry.  He can’t eat.  We have to somehow get him into London, to Great Ormond Street Hospital, without him losing his cool.  Anxious (freaked?), out of sorts, uncertain.  He asked if he would still have the bandage on when he goes back to school on Monday – time has never been something easy for him to wrap his head around.  We have explained repeatedly this means no gymnastics for three months, that he will have to do exercises after this for his fingers, that he will have a big bandage.  But right now, this moment, all he knows is he cannot eat.  And he keeps staring at his little thumb.  The thumb that is 1/3 the size of his left hand thumb.

Am I mum enough for the uncertainties of this day?  The child who we need to give advance notice for everything does not yet know (because they don’t yet know) if he will need to stay overnight tonight in a big London hospital or if he will be coming home.  He worries about his dog.  He worries about things he doesn’t tell us worry him.  Our bag is packed, but somehow, I am feeling uncertain.

Facebook just popped up a memory from years ago, another time he was being prepped for a surgery – a tonsillectomy.  The nurse that day asked me if we were missionaries and if that is why we adopted.  This system can be cruel.  Somehow when we are at our most vulnerable they think that is the time to start questioning adoption, demanding to see papers.  Raising this issue right in front of our child when he most needs security.  This time, I have the papers in my bag.

Am I mum enough?  I don’t know if this is ‘right’ to have this elective operation.  I know there are children out there having far more serious operations to save their lives.  He has managed for 13 years with this hand, are we being foolish in trying to address this issue?  What if it doesn’t work?  What if we have put him through this for no good reason.

Somewhere inside me is a scream.  Why does this poor child have to go through so much pain and why does he have to face hurdle after hurdle where others walk on a more gentle path?  We can’t do operations to fix the parts of his brain that were affected.  Just a few days ago he asked me again about FASD.  He said he wished he didn’t have it.  He said he was sad.  I said I wished he didn’t have it too, and I was sad too.

We are lucky to live in a place that has free healthcare.  We are lucky to live near one of the world’s leading children’s hospitals.  I think everyone this year will get a copy of Peter Pan for Christmas – the royalties from that book have funded Great Ormond Street with its magical waiting rooms and state of the art technology.

But still, here we are.  Getting ready to make a journey that is outside all of our comfort zones.  Trying to fix – or help at least – in one small way at least one of the physical effects of prenatal alcohol exposure.

I wish just one of the self-righteous women who proclaim it’s their right to drink alcohol while pregnant could make this journey with us today.  I’m not talking about the women who don’t know they are pregnant, the ones who are confused about guidance, or the ones who struggle with addiction, abuse.  I have sympathy for them.  I am aiming this at those who accuse us of policing pregnancies when we try to raise awareness of the risks of alcohol in pregnancy.  You can’t possibly know what you are risking.

Come with us today.  And then I dare you to take another sip of that self-indulgent glass of wine.

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See also Prenatal Alcohol Exposure Damages Bones Too