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.

—-
See also Prenatal Alcohol Exposure Damages Bones Too

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Slime, Enchantment and FASD

Blog Slime

By SB_FASD

Once upon a time, and twice a week since then, a little boy would make a mess.  Shampoo.  Toothpaste.  Bubble bath.  Washing up liquid. Laundry detergent.  Perfume.  Powder.  Spray deodorant. Mouthwash.  Flour.  Butter.  Bicarbonate of soda.  Food colouring.  Vanilla extract. Broth cubes.  Salt.  Corn flour.  Sugar.  Fabric softener.  Conditioner.  Bath gel.  Even – in a time long, long ago – some cleaning fluids.  Nothing was safe.

This little boy made messes big and small, smelly and sweet.  Sticky and staining.  Hidden and brazen.

For years his parents chastised and chided.  Hid things and redirected.  Monitored consumption and kept to the script of what we are supposed to do with such things.  Teaching, they thought, that it’s not good to waste, that we don’t play with food, less is better than a lot.

But still the messes continued.  In fact, one window may be forever fogged in the corners from some unknown combination that was once sprayed and congealed.

This little boy grew to be a googler.  He became adept at finding Kids Choice awards, and played over and over and over again the scenes where famous stars are covered in slime.  He found YouTube channels full of people doing challenges where they sit in bath tubs full of cheerios and jelly.

Maybe he had tried over the years to tell his parents where all of this was going.  If he did, his parents didn’t hear.  They just occasionally grew angry when the shampoo was gone, when the bath had to be rinsed yet again from whatever-mix-that-was-this-time.

Meanwhile his parents had been googling and learning themselves.  Doctors helped.  Diagnoses opened minds.  The parents began to see this through new eyes, and began to rethink his relentless ignoring of warning after warning.  They began to see he wasn’t being ‘naughty’ – they finally grasped the behavior as a symptom of a need that he could not express. But knowing that wasn’t enough.  They had to change their approach.  Create a different environment.

So they started to buy cheap items for sensory play: foaming soaps, oozy liquids, cheap whisks and plastic bowls.  To the consternation of some, they enabled the mess but fulfilled a need.

Meanwhile, the happier boy kept googling. He watched hundreds of videos.  He turned his attention to a single focus.  Slime.

It wasn’t pretty.  The house became filled with randomly found containers of soapy smelly stickiness.  But this time the parents didn’t fight it.  This time they planned fun trips to the store with the boy so he could pick the ingredients rather than help himself to Dad’s favourite shaving gel.  They googled to try to find UK replacements for Elmer’s Glue and Borax (the holy grail of slime making), knowing how frustrating and abstract this was for their son to understand that some ingredients were not to be had on these British Isles.

They set up some spill trays and gave smaller bowls to limit the quantities for experimentation.  They lined up saline solution and salt, cheap shampoo and hand soap.  And day after day after day, the boy tried.  And he tried.  And he tried.  He just couldn’t understand why it wasn’t working.  He wasn’t so keen to follow the recipes exactly, he insisted a dash of this or a bit more of that was what he needed.  But though it was not ‘successful,’ he was absorbing and learning using his senses.  He was focused.

The household was under a spell.  There were mixtures in the freezer, in the refrigerator, on the counter, and on window sills.  And still he googled and still he tried.  The boy was happiest when mum was sitting by him, watching the videos and listening to the fake American accent he adopted as he mimicked the kids on the videos.

Day after day.  Powder and flour clouds occasionally rose over the sticky concoctions.

Never did the parents say a negative about the mess this time.  They stayed close and helped clean.  They supported, not critiqued.

And then, after maybe 10,000 mixtures, there it was.

The boy made slime.

Good slime.  Slimy slime.  Goopy slime.  They kind of slime you need to put in a leak-proof container and bring to school to show people kind of slime.  The kind you ask mum to stand next to you, with her own little bowl and spoon, so you can show her your special recipe kind of slime.  And yea, though it was remarkably close to the one she was trying to show him weeks ago, it was so much better because the boy made it himself.

He had to learn this his way.  And low and behold, he did.

On this magical night when proper slime finally was created, as the mum was walking out of the room after the high fives and well-dones, she heard it.

The boy’s voice.  Quiet, clear, and confident.

“I AM a scientist!”

He said it to himself.  It wasn’t bravado.  It was fact.

The words hung there in the night.

And suddenly, the parents knew that all of it was worthwhile.  And they were pleased that though their patience had been tested again and again, this time, they knew they had helped their boy on a remarkable journey of self-discovery.

You might come yourself to this enchanted house.  You might still see the huge tray full of half-mixed concoctions. Yes, there are stains on carpets that are ignored, and you might rightly stare hard at the cups and spoons you are given which may or may not still have traces of the taste of glue clinging to them despite the parents’ best efforts.

But the family hopes that if you come through their doors you will see Progress.  This once dark and stormy house has become a happier, calmer place.  It’s far, far from Perfect Land, this much is certainly true.  But in SlimeVille there are pockets of joy and self-satisfaction.  There are bridges across Sensory and Cognitive Needs to Productive Lives.

And what was once a battle has been redrawn into a shared camaraderie, a past-time that opens doors for discussions between them rather than the flashpoint for shouts and frustrations.

The boy had been trying to say this for years.  Once again the parents were too slow to see what he was teaching them.

But they learned, and it helped.

 

 

Four Letter Words for Help – FASD

Blog_HearBeyondTheWords
By @MB_FASD

Adoption UK carried out a massive media blitz this week based on a survey that said 25% of adoptions risk breakdown because of a crisis fuelled by the trauma children suffered in early life. Trauma which leads to aggression and violence in the adoptive family. It is a picture that a lot of families with children with FASD recognise, although Adoption UK never mentioned FASD in their media work. While not all children with these issues have FASD, it certainly struck a chord with me.

F**k. B***h. S**. Again. And again. At 7.30 in the morning. Or 7.30 in the evening.

Most kids with FASD lack impulse control. That includes over language. Bad language.(There is some research that says language is stored in a different part of the brain to other language, so this may be related to brain wiring too.)

We have a lot of bad language in our house. A lot. And, following the advice of professionals, we ignore it. Most of the time. We have to. If we didn’t we’d be in constant opposition to our son, in constant conflict that would help none of us.

He doesn’t mean it. A very clever educational psychologist once asked us “Why do you assume intentionality?” when discussing some of our son’s seeming acts of defiance. That struck home. We had been assuming that our son was being deliberately naughty. Oppositional defiance disorder is a thing. Some kids with FASD have it. Our son doesn’t. He just can’t control his impulses while dysregulated or partially dysregulated. So a stream of insults fly.

In the mornings and in the evenings, around the edges of his medication, he is partly dysregulated. And at those times the language comes out.

It’s very difficult. We struggle with this in a big way. I do especially. Not because of the words, but it gets really hard as it’s tied up in his refusal to let me help him much of the time. It feels like a strong rejection. (My wife tells me I am not seeing just how often these same words are used in her direction.)

But when addressing me, he always wants Mum. At least, when Mum’s there that’s how it is. He calls for something. I go to his room, and get a string of expletives and what feels to me like rejection.

I bring him food, and he won’t even look at it because I breathed on it. Happened just recently, I made mini-cheeseburgers to eat but I breathed on the food. So it’s covered in germs. Sometimes the reaction is physical and can hurt, but the actual blows are the easiest to take, it’s the emotional ones that are harder to shake off.

It’s really hard not to take this as rejection. I know that many times I don’t do a good enough job of showing that I’m relaxed. That I’m not irritated. That the bad language washes over me. Which generally it does. But the constant pushing away his harder to deal with. At a certain level it hurts.

I know he doesn’t mean it because he often does let me do the foot rubs and the leg scratches. When Mum is away, or just out, then all of a sudden my attempts at cookery are suddenly acceptable, and my help with the latest project really needed.

Our son isn’t proud of these moments – he apologises after the fact, he comes back to build bridges.  He stays close.  (He once famously told a deputy headteacher that he had been dysregulated when he cursed at him, he couldn’t help it then but he was sorry – a pointer to the fact that, with self-awareness, change happens).

The ways in which aggression can manifest itself are complex.

In a drive to highlight a very problem, and look for government action to support adoption, Adoption UK risked leaving an extremely negative picture which will undoubtedly put many people off adopting. As an adopted person myself, I would have done it differently. I would have painted the picture as bleak as it needs to be, but then softened it with hope, and a perspective.  In our house we have elements of all of those things that were splashed across the media following the results of the survey.  It’s not that we don’t get it.  But because we know the reason for our son’s behaviour, we frame our approach accordingly.  Importantly, we have a diagnosis in place as we head into the coming teenage years, something the experts say is vital to chances of a successful transition to adulthood.

Once you reinterpret the behaviours as a symptom of the condition, and learn strategies to address the underlying need, the sense of crisis diminishes.  A year ago we were in an intense period of crisis but things can turn around.

If you can’t change the child, then you have to change the environment around the child. You have to reduce reasons for anxiety. You have to adapt their environment so they can live as calmly as possible as much of the time as possible in that environment. You have to give them the time they need to adjust to change, whether that change is getting dressed for school or moving from one activity to another. We’ve changed his room, put in a quiet space and let him have disco lights that calm him. We let him dress how he wants to go out, not how we would like. We adapt because he can’t. And we’re lucky, friends and family have adapted too.

Things have got much better with time as we have learned to do this. He has learned as he gets older to begin to understand his triggers and to ask for help. He has been helped definitely by meds for ADHD.

No child is unchanging, nothing lasts forever. Situations change. And we have to change along with them. I have to do better at soaking up the bad language, and helping guide our son to a calmer place when dysregulated.

What’s the f***ing choice?

*******
P.S. – Support is available for families who are struggling.

Mothering Sunday

Mothering a child with FASD

By @FASD_Mum

It’s another “Mothering Sunday” here in England.  I am still unused to these earlier, colder March Mother’s Days, months before the day is celebrated in the USA’s May sunshine.  It’s less lilacs, pink roses and blooming azaleas, and more peeking crocuses and daring daffodils here.  My own mother died one May, amidst those blossoming blooming days, carried away on the breeze.

Maybe it’s a gift that this annual day devoted to thoughts of my own motherhood happens now for me in a different season.  I never had the chance to ask my mom about my own mothering.  There are about a million things I would love to ask her.  And yet, she spent just about every day of her life preparing me for what she considered the greatest role in life.

My mom never knew my husband.  She was not there for my scary ectopic miscarriage, when my mortality was suddenly there staring at me from an untried and still green doctor’s face.  She was not there for the birth of our first son, when I found myself strapped onto an operating table, not properly anesthetized, begging them to just cut anyway when I heard them all shouting the baby was in immediate distress. (Thankfully, they were able to put me under general anesthesia in time and the baby was more than okay, he was and is spectacular.)  She was not there when we picked ourselves up after we failed to conceive again, when we visited the IVF clinic and decided that route was not for us.  She was not there when we first saw a video of the young toddler in a Russian baby home, crawling commando style to get that toy he so desperately wanted, determined and reaching.

She wasn’t there at the airport with our family and friends as we brought the newest US citizen through the airport toward our future as a forever family.  She wasn’t there to see the distress of our eldest son when his new baby brother wasn’t wanting those cuddles.  She wasn’t there to see this overwhelmed toddler slam himself into walls and floors, a permanent bump on his forehead for years, to see his aversion to touching grass or his exhilaration at feeling a breeze. She wasn’t there appointment after appointment after appointment after appointment.  She was not there when finally at age 10 the news of his Fetal Alcohol Syndrome diagnosis smacked me down harder than I knew at the time, when “irreversible brain damage” became the new prism through which we began to understand our son’s condition.  She wasn’t there. It is a deep, deep ache.  My mother wasn’t there.

But she was.  She is.

My mom was salt of the earth.  She was one of nine kids of two Scottish immigrants. They struggled through the Great Depression, she told tales of stealing coal from railroad tracks, eating mustard sandwiches.  She couldn’t accept the scholarship she was awarded because she and her sisters shared clothes and she did not have one week’s worth of clothes to take to school.  She was headstrong, smart, and imperfect. She was a force of nature. She refused to allow the five of us to take ourselves too seriously.  She was relentless in her insistence that we stand tall (often said with a knuckle pressed between my two shoulder blades to get me to straighten up, prescient I guess of my current neck/spine issues).

So, how do these musings tie into a blog about a child with FASD?  I never knew it at the time, but she was preparing me all the while for this moment, this life.  Her quirky sayings play over and over and over and over in my head. They pop up sometimes at the strangest times, offering comfort and direction.

“Pick yourself up by your bootstraps.  Dust yourself off.”

Our son’s diagnosis hit me hard.  Suddenly all the sensory integration in the world was not going to fix this.  She would have recognized my depression sooner than I ever did.  She would have told me to get on with it.  She was insistent that everyone is capable of love, everyone can feel love and that is the most important thing of all.  She taught me to focus on the love, to look for the sparkle in his eye and to cherish it.  She trusted that eye to eye contact more than most.  I can’t tell you the number of times we have shown people who believed our son was autistic those pictures of our first meeting at that baby home, where our son is nose to nose with us, eyes gazing into our eyes and smiling. Even when the baby home offered us another child if we had any concerns about adopting this little boy, we trusted those moments looking into each other’s souls. We were never going to change course. This was meant to be.

“A mother is only as happy as her saddest child.”

She would have known this fear, this terror that hits at times, the deep aching that must be suppressed because if I start crying it will not stop.  The knowledge that through no fault of his own our son is going to walk through his life with a disability that few will understand.  He will face time and again the confusion and disappointment that comes from being misunderstood and pushed aside by those who don’t take the time to see him in his entirety.  She would know the full message of my hugs, which seek to swathe this lovely child in a surety stronger than the world’s pressures: your mother knows you, she sees you, she loves you for all that you are, as you are.  You are enough.  You are everything. You are perfect, because you are you.

“Here’s to you, as good as you are and here’s to me as bad as I am.  As good as you are and as bad as I am, I’m as good as you are as bad as I am.”

This was my mother’s favorite toast.  She hated hubris.  She ended up at tables and in forums where some Very Important People would be, and she rarely held back.  She knew she was imperfect.  She always said that with an education she would have been dangerous.  But she taught us to respect people not for their titles, fame or money.  She saw straight through that, to the core of a person.  I know she would have taught this toast to our son as well, staring into his eyes, teaching him to dare others to think they were any better than he is, no matter what.  “We all bleed,” she would say.  “Everyone uses the toilet.”  None of us are inherently any better or worse than another.  This is a message I seek to instill in our sons, both of them.  It is a message of self-confidence that our youngest will need to draw on time and time again as others may think they are better than him just because he is wired differently.

“You’ll get by in a crowd with someone pushing you.”

My mother refused to let me stare into mirrors.  She prided herself on getting dressed in five minutes and laughed that it took my dad longer than it took her to primp and prepare for a dinner out.  If I ever felt self-conscious, she would say, “Who the hell is going to be looking at you anyway?”  It sounds cruel, but it wasn’t.  The point was to realize that none of that matters.  We all have insecurities, and in a room full of others with their own insecurities, ours will not stand out.  We should walk confidently, no matter what our own imperfections.  We should walk tall no matter our differences.  I want our son to know he is as good as anyone else.  Anyone.

“It doesn’t matter if you are a garbage collector.  Just be the best garbage collector you can be.”

As kids we were encouraged by our parents to push ourselves, to stretch and to challenge ourselves outside of our comfort zones.  The goal was not fame or fortune, though let’s be honest, those were not to be dismissed if possible. But we were taught to find something we could do well, and do that.  Walk tall, be yourself, but work at it, hard.  Laziness was not tolerated in a house where by 7.00 am vacuums were out by and coffee was being served to foremen of the various building jobs.  Just be the best you can be.  We seek every day to help our son with FASD to find and celebrate his strengths, to build on those things he is naturally good at, his music, his gymnastics, his joy, his determination, his strength.

“Who don’t like shouldn’t look.”

Mom taught us not to care what others thought.  As long as we were walking tall, pulling ourselves up when we fell down, so long as we were true to ourselves and trying our hardest, it did not matter what others thought.  As we sat yesterday on a London underground train, this phrase came to me as I stared at the man staring at our son’s beloved Egyptian pharaoh headdress.  “Who don’t like, shouldn’t look.”  Buzz off, man.  “Go pound salt,” she would have said.  You do not know what you are seeing.  This child is braving a world of loud noises, confusion, changing scenery, not fully understanding where he is going but he is here, and doing pretty damn well.  If you don’t like his headdress, don’t look.  If his silliness bothers you, it’s not his problem.

“Look for the silver lining.”

I remember many a car ride when my mother would burst into song when she would see the silver lining over a storm cloud.  We were taught to look actively for them, to make a wish on them.  The silver linings are precious.

And this brings me to this morning, to yesterday, to the first day of the adoption, to the tomorrows I know are coming.

My mother would have loved our sons.  Both of them.  Equally.  For who they are and for who they will be.  She gave me the strength I need.  She taught me how to celebrate the potential we all have to be the best we can be.  She never defined success narrowly.  She knew that what counted was the effort to be the best we can be, each of us, in our own way.  She always understood we all get by with the help of others.  She would have loved to see how we pull together now to help each other achieve.  She would have loved to see our family, community, friends all join to help clear a path for our son to soar along at his own speed.

“Life is not fair.”

She prepared me for that day when my blind optimism was tested.  She did not believe that life owed us anything.  She was not one to let me wallow in self-pity.  She would tell us to just “put one foot in front of the other.”

My sons will never know my mother.  I will never know exactly what she would have said to our youngest.  How she might have instinctively tried to help him.  What she would have said to help me help him.

But I do know something.

I cannot sit here on this Mothering Sunday without honoring her, thanking her, reaching out to her across the years.  I used to think she had it all together.  I used to think there was a Plan, that my parents knew all.

I see now this improvisation we call parenting is much more trial and error than I realized it would be.  We are winging it almost every moment of every day.

I used to think Special Needs Parents were some sort of saints, some ‘other’ kind of parent.  I never knew that being a mother of a child with special needs just meant applying all those lessons we already know about parenting, about being good people, testing those maxims a little harder, stretching the truths a little further.

My mother loved the flowers of Mother’s Day season.  She immersed herself in the moment of their becoming.  Forever in my mind I will recognize her soul in that uplifting feeling that comes when you first see a spring blossom.

And here we are, in a different season, still celebrating the same things.  Our youngest son has always greeted every daffodil he sees with excitement, eagerness.  His spirit seems to leap when he sees them – he can spot a narcissi or daffodil from a hundred yards away and he runs toward it.  He has taught me that they have a lovely smell, but you have to really stick your nose into them, sometimes to the point of getting pollen on your nose.  His smiles and love of these cheery flowers is something that makes us all richer, happier, more fulfilled.

I think my mom would know exactly how to help this child to be the best that he can be.  I think she knew somehow that beyond all my wanna-bes, all my visions of changing the world, she knew that one day that being a mom would be my greatest role.

I asked her one time if she thought I would make a good mom.  I will forever wonder what flashed through her head in those long moments she stared hard at me.  I was expecting an immediate reply.  I was uncomfortable. She was gazing deep, looking at me from head to toe, inside and out.  That pause used to bother me, I played it over and over in my head. Insecure, wondering if she doubted me.  Now it comforts me, because I know this was not a reflexive answer, but a considered one from a woman I consider one of the greats, “Yes,” she said.  “Yes, you will.”

I hope so.  I am trying to be the best mother I can be.  I get by with all of those in this crazy, lovely, wonderful crowd who are pushing me, quite often when no one is watching.

And on days when this life seemed too much, too hard, too unfair, she would have said, “I wish you bluebirds.”

I never knew exactly what that one meant.  But it was somehow a kick in the ass to get out there and find the beauty, from a Frank Sinatra song about not being able to be with someone you love:

I wish you bluebirds in the spring, to give your heart a song to sing,
And then a kiss, but more than this, I wish you love.
And if you like lemonade to cool you in some lazy glade,
I wish you health, and more than wealth, I wish you love.

 

 

 

 

Some moments

We love a child with #FASD

By @FASD_Mum

Your child has snapped.  Suddenly, you are scanning the room to see what is breakable, what is heavy, what is sharp.  You are assessing where your other son is, where the dog is, where the windows are in relation to the likely path of that whatever-it-is-this-time that is in his hand.  You are swamped with feelings, frantic, fighting down your own instinct to yell, to over power.  You have read enough to know: You. Must. Be. Calm. Really. Calm. Now. But those books don’t tell you how to stem your own flood of emotions, the fear, the distress, the frustration, the why-are-you-doing-this-to-me-who-loves-you-most self-pity that does come (of course it comes).  He’s a banshee, screaming in your face all the words you have spent years avoiding, diverting, discussing, banning.  And he’s good at aiming them right at your weakness.  You just want it to end, but you don’t really know how.  You know you need to back away.  You know you need to stop adding more noise, more chaos.  You know you need to be reassuring.  You know you need your love to wash over him.  But right at this moment he is way too close to the sweet ceramic plate he made for you and you yourself are not yet calm in this storm.  You shout (yes, you know you should not).  You place yourself between those kicking feet and the dog.  You want someone to beam into the room and slow it all down.  Images flash through your head of a hundred things you did wrong as a parent this morning that led to this moment.  You yell at your husband, irrationally angry at him because he doesn’t know what to do either and because you can.  He will understand. You hope. In a flash you hope that bond is not getting too frayed in all this tugging and pulling and shredding of normalcy. But you can’t stop this.  It’s all happening anyway, despite the books, despite the hours, days, weeks of research, despite the strategies and supposed-to-s. And of course the added noise now of your own loss of control only ratchets things up.

These moments are fast, furious, and unpredictable.  They are bewildering, overwhelming, and the worst of the problems we have yet encountered with our son’s Fetal Alcohol Syndrome.  We can handle the rest of it, but this leaves us adrift. We spend our days analyzing the lead up to these moments, trying to avoid them, walking with the knowledge that one may be waiting around the next corner.  This moment now may be calm but we can never fully predict the next outburst.  Well, we can predict it, but not always avoid it.  We are thankful that so far these mostly only happen at home.  He is able to hold himself together in other situations.  We are proud of him for that.  It must take enormous effort. We are petrified what might happen some day in the future at the wrong place, wrong time.

We believe his side effects of stimulant medication are making this worse, much worse.  We try a couple of weeks off the medication, and he is ‘more crazy, less angry’ as our elder son describes it.  But he is like an engine revving too fast.  He cannot focus in that un-medicated state, at least not without us having more tools in our parental toolbox than we have at the moment.  So we try a new short-acting medication only for school with great success…at school, but with continued and perhaps increasing disintegration at home.

And then it’s half-term break and who the heck knows what to do now.  We don’t.  We don’t give the meds, he is all over the place.  First day of break he wears his aggression on his sleeve.  Unable to do that again, we do give the meds the next day, but it’s too late, the anger and agitation is already unleashed.  Now we try again a couple more days without the meds.  He is on a chemical rollercoaster that is not really fair to him. We know our home is not structured enough, it’s too messy.  We know that screens sometimes help – except when they don’t, and then they really don’t (where do you think he gets these ideas to ‘prank’ people, the ideas to have food ‘challenges,’ that particular way of spitting out that particular insult with such gusto?).  We know he needs to avoid sugar in mass quantity (learned that one the hard way), but then he finds a secret stash of Smarties that were purchased to put into cookies over the holidays.  So all hell breaks lose at 8.45 am when he is told that he must wait until after lunch for those.  Flailing, sailing, crashing chaos ensues.

Our son has always liked wigs, dress up clothes, and has been pining for sparkly heels for years.  Yesterday I finally relented and he has now a pair of shimmery gel shoe heels.  He loves them.  He has been dancing around wearing a wig and feeling particularly pleased.  But the heels are remarkably hard for so-called ‘gel’ and they hurt if they are aimed at one of us – intentionally or not.  The buckle is fiddly and he cannot do it on his own.  They are quickly becoming Public Enemy Number One in our house. The rules are he is allowed these clothes for dress up and performing at home, but then he wants to wear them on the dog walk.  You can guess for yourself where this is heading.

I do not and never have cared a whit whether someone choses to love a man or a woman.  I believe love in all its wonder is to be treasured.  I will love my kids whomever they love.  I respect and celebrate it when people push gender stereotypes and dress the way they want to dress.  I can handle it if my son prefers to sparkle and shine.

I like to think we are cool parents.  We have slowly over the years increased our son’s dress up basket to include skirts and sequins.  He absolutely loves dancing in costume.  He loves the feel of hair or silk around his face as he twirls.  He’s good, really good, at performing.  Who am I to say he might not be the next glam rock sensation (or pop-glam or just glam)?

But every bit of my self-perceived ‘coolness’ evaporates when it is tested by the thought of sending my vulnerable son out there wearing a wig and sparkly heels into a world that already doesn’t doesn’t understand him.  So we compromise and he has an Egyptian pharaoh headdress that is ok for outside, some blue half-glitter boys’ boots he can (but never does) wear on the scooter.  These are arbitrary distinctions totally lost on a child with FASD.  I know it, I get it, and we pay for this confusion nearly every day.

Perhaps I digress, but not really.  The point is our lives are arbitrary.  There is no rhyme or reason to some of these moments that cascade into chaos. You may read this and think you can spot ten different things that we are doing wrong (get all candy out of the house, don’t let him have screens, don’t bring the sparkly shoes into the house).  And you are probably right.

This is complex, interrelated.  Things tie into other things in ways you may not realize from afar.  For our son, it is dress up clothes, which way the windshield wipers go on a car, whether streetlights overhang or are straight up, if the spoon is touching the food when he sits down to eat.  The triggers are random and run deep and vary from kid to kid. One day something bothers him, other days it does not.  If something catches his eye at just the right moment, suddenly that can become the focus of intense desire or revulsion.

Our son has brain damage.  He cannot maneuver the world in the way a neurotypical person would.  I cannot fully explain or understand how the various connections are firing off or getting misdirected inside his head.  I just know that if he wants something one way and if at the moment he cannot understand why it cannot be that way, bam! We are off and running.

The key of course is giving him the tools to be able to begin to understand himself.  We try.  Every day we try.  We improvise.  But some days, weeks, months, it feels sorely inadequate, our learning is not fast enough.  He is speeding toward adolescence, and we are all still woefully unprepared for the hormonal storm that we know is coming.

The moment after a blow out, we are stunned.  He is perhaps up in his room, in the dark, rocking to music.  We are perhaps staring at our own screens, not yet ready to talk, too edgy, feeling defeated.  Scared.  Maybe my now-saint-of-a-husband maneuvered him out the door and our son is already racing by the river on his scooter, with the dog, laughing and loving the way the wind streams through his pharaoh headdress, the meltdown gone now from his being.

In these moments after the storm, I am empty.  I know that we have it better than many, many parents raising children with FASDs.  I know our son is one of the ‘lucky ones’.  The alcohol did not do its worst damage on him.  But still, we parents are left adrift by a System that doesn’t give us enough to really help our children.  We improvise, we become advocates ourselves, parent networks try to fill in the gaps where the System has not yet provided support.  But seriously, it’s not good enough.

By some estimates 3-5% of the UK population has been affected in some way by in utero exposure to alcohol.  There is a spectrum of needs.  Thousands of scenes like the one I described are being played out in houses across the country. And that’s just one window into the life of a child with an FASD, there are other ways this brain injury presents in other kids, in our kid, in other settings.  The effects last forever.  There are thousands of adults walking through this world misunderstood, perhaps undiagnosed. Struggling.

A limited number of experts know how to advise us to avoid the scenes I described.  There are therapeutic strategies that have been tried and tested worldwide.  There are educators who know how to teach our kids.  There are answers out there.  But those experts who are already engaging in this field need funding, more need to be trained, the greater population needs to be better educated, and families need support.

But, for now, I must leave these thoughts.  They are back from the dog walk.  It’s time to push my maternal reset button.  Smiles.  Here we go.

 

The Most Powerful Video on FASD We Have Seen

The Most Powerful Video on FASD We Have Seen.jpg

By FASD_Mum and FASD_Dad

We don’t normally do posts like this, but we were both riveted to the screen this morning.  This is a perceptive and authoritative video explaining Fetal Alcohol Spectrum Disorders and the life-long impact even small quantities of alcohol can have on children before they are born.  If you would like to better understand our child, and others like him, please give yourself 26 minutes to watch this film.  The young 10-year-old girl in this film could be our son.

And please, support those around you who are or may become pregnant by helping them to avoid alcohol during those precious months. Experts in this video show the proof that even a small amount of alcohol in utero at the wrong point in development can have profound and enduring effects on a child.  And please also encourage our societies to help meet the needs of those loved ones who are struggling every day of their lives with this hidden disability.

The Building Storm of an FASD Meltdown

FASD Meltdowns

By @FASD_Dad

Sometimes the meltdowns are like massive thunderstorms in the summer heat. They build up, the tension mounting, the atmosphere more and more uncomfortable. And then, when the pressure is too much to bear, the storm breaks in a wild, howling stream of blows, words, noises. No-one is the target but anyone in the way can be hurt. And then, just as quickly as the storm arose, it’s over. Calm returns. All is forgotten (quite literally) and we move on. And so does he, not understanding what has happened or why.

We were away for a few days. A short family break. It all went well. The unfamiliar places. The absence of routine. Especially the hotel swimming pool open all day. Even the steam train breakdown provoked no serious reaction. Neither did the long queues on the motorway in a traffic jam. Corfe Castle and Old Sarum which might normally bore were tied joyfully to school lessons about William the Conqueror. Even a noisy, crowded Pizza Express wasn’t a problem. We had a great time.

And then, as it can, it all fell apart.

We got back home with no problems. But the next day there was homework to do. And that began the problems. Some tears. The protestation that ‘I hate school and I’m not going again’. Or ‘I want to go back to my old school, that was better’ (that’s primary school and no, it wasn’t, not when a meltdown was brewing). Somehow, with difficulty, homework got done as it had to be. But the storm was coming.

The next day it was the swimming pool, normally a favourite and a way to take the edge off. Not this time. The water was too cold. It was too hot. ‘I HATE the swimming pool and I HATE swimming’. An hour went by and it didn’t get better. Getting changed back into clothes was a major struggle. And the atmosphere was tense until he fell asleep.

And still tense Monday morning before school. So dressed early (with some shouting and struggling), out early with the dog and to school early. I heard later from school that it was a ‘bad day’. He couldn’t sit still. He couldn’t concentrate. He chewed up pens and pencils. He got detention for being rude to a teacher.

And then when he got home after school, the storm broke.

We had to drive his brother to theatre. They got in the car and I went back to pick something up. And he went into a deep, terrible meltdown. The dam broke and the wave of emotion tore through. Sitting in the back of the car kicking the seats, kicking his brother, punching, screaming, sitting, howling. The unbearable pressure inside his head releasing itself in the only way he knew how. Then his brother crying, shouting, hitting back. I manage to stop it, but only by restraining him and shouting, yelling myself. It’s a bad scene. The worst for a while. But it has broken.

The mood is awful while we drive to theatre. Then into the town centre. Suddenly he’s quiet. He’s a little sad. He doesn’t understand what he’s done. Why he’s done it. He doesn’t seem to remember the worst. ‘What were you thinking?’ ‘I wasn’t thinking.’ ‘What did it feel like?’ ‘It felt bad inside my head.’

And it was done. He held my hand as we walked to McDonalds. He smiled and played on the new tablets they’ve put in. He hugged me and told me he loved me. And I hugged him and told him I loved him too. It was finished, the storm and passed and a peaceful calm was restored.

Until the next time.

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For more information:

Meltdowns

Note that there is a difference between meltdowns and tantrums that must be understood.

Nothing is Routine with FASD

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By @FASD_Mum

Sometimes my job takes me away from home. Quite often, actually. My husband also travels at times for work. Our eldest calls it ‘tag parenting.’ When we learned that our youngest son has Fetal Alcohol Syndrome we were told that a regular routine is best.  When we asked an expert if this travel would negatively impact our son he said, “There’s a lot of kinds of normal.  For your family, the normal routine is that Mum and Dad travel.” I’m not sure I bought that then, and after coming home to a house in crisis upon return from my most recent trip away, I am not sure I buy it now.  But jobs are limited, I have responsibilities, money is tight, and my work is part of who I am.

Parents of kids with special needs know never ending self-doubt, the feeling of never having done enough. Always wondering if there is something more we should do. Wanting the world for our kids, and not being able to deliver it.  Wishing above all for a quiet, normal day.  Knowing that day will never come.  Knowing that our kids experience a different kind of ‘normal’.

But the reality is that we do influence and shape their world.  The pressure is immense.  We are the threshold between a bad outcome and a good outcome.  Our guidance does matter.  When we give more it does make a difference.

But sometimes there isn’t more to give.  This week I was whomped by a 6,000 mile jet lag.  My body just could not readjust to time zones and it crashed.  Night was day.  Even though my sons really needed me, I couldn’t get my head off the pillow at the right times.

The same feeling happens to special needs parents all the time.  It doesn’t matter what causes us to hit the wall, but we all do at times.  Sometimes we hit it hard.  Sometimes getting that head off that pillow is the hardest thing we can do.  Because we know we need to smile when we are upright.  We know there is no escape from the demands on us.  We know that it matters a whole lot if we put the right food into our kids’ bodies, the right messages into their hearts, confidence into their stride, a fluffed-up soft pillow under their heads at night.

“It’s the same for every parent,” those of you with kids who don’t have special needs will be thinking.  And yes, mostly that is true.  But with a child with special needs, it’s magnified.  In our home, if we are not on our game, things fall apart.  If we lose the plot, our child suffers. The brain damage associated with Fetal Alcohol Syndrome demands extra parental vigilance to keep things positive. A meltdown can poison the air for a whole morning. When our son’s insecurities or tiredness rise, the symptomatic behaviors increase.  Suddenly this sweet child I love more than anything is shouting rude names, I am clinging to breakable items hoping they don’t get tossed and signaling to my spouse to get the sweetest dog on the planet out of kicking range, hoping our eldest is not getting too upset by the scene as it unfolds. Our youngest son daily loses the ability to self-regulate, it’s a part of his battle with Fetal Alcohol Syndrome. When it happens, the whole world becomes a screaming, flailing mess of motion and imbalance.  Today he told me when it happens he feels like there is a ‘war’ going on inside his head.  That is his ‘normal’. At times.

There’s no room in our lives for my husband and I letting our bodies hit the wall.  There’s no room for self doubt, self assessment.  There’s no room for self pity or wishing for ‘normal’.  I know there also is no room for guilt, that gnawing feeling that I’m not doing enough, that panic that we only have a few more years to truly influence his chances before he becomes in the eyes of this world an adult.  I’m trying not to feel guilty that my work took me away, and that my body crashed. I’m trying not to feel insulted that the apple crumble I made to show my love was rejected, to feel inadequate that there are not clean white socks for PE, to not feel defeated that I did not know that a piece of homework was overdue.  I’m trying not to feel responsible all the time.  But I am.  We are.

I am trying to smooth this world with my cuddles and my belief in the goodness that is inside of him, that innocent unbridled enthusiasm that shows when his eyes are all lit up with sparkles and his cheeks give way to that cheering smile.  I am trying to cherish the joy and the potential, to hold onto the reality of those moments and let the others wash away as unpleasant side effects.

Nothing is routine with FASD, but there is a choice.  Every day, moment by moment, we can focus on the negative or the positive.  I chose the sunshine.  In that light is where our child’s future can unfold.

Normal? Routine? Predictable? I may never understand how those words apply to a child with FASD.  I may be inadequately responding to our child’s needs.  I may be deluding myself that I can do it all (especially during a week when I cannot get my head off the pillow).  Our days can be upended in a flash, but we always come back to the love. That is the constant.  That is where our ‘normal’ lies – in the brilliance of his smile, in the warmth of our love. ‘Normal’ for us is a messy, incomplete, striving, hoping, tiring, chaotic never-ending series of nearly-there moments, capped by some truly rewarding moments of ‘yes’.