Some Kindness Please, Brains Are Involved

We love a child with #FASD-5

By @FASD_Mum

It was just me and that machine.  Even my wedding ring was left outside that door.  Dizzy and uncomfortable, I tried to keep centered while the world jackhammered down on me in staccato bursts.  A pinging noise echoed throughout my head, a sonar sound like being in a submarine, wanting, needing to push off toward the open sky.  I imagined hanging onto my dad’s shoulders, he’d get me to the air.  My thoughts were everywhere, translating these overbearing noises into the familiar.  That tap-tapping reminded me of those days on my daddy’s jobs, when all the men were banging nails and building walls, dreams, for the people who would live there.  I remembered a fevered moment when my mom brushed my hair from my temple. I pretended that instead of the head brace it was her arms holding me still.  I kept pushing away the images of my mom after her chemotherapies, after she was swollen by steroids, after the brain tumor took over.  No.  I would not, will not, do not go there.

On Wednesday our 11-year old son with Fetal Alcohol Syndrome refused to go to school.  The day before had been horrid for him.  He couldn’t sit still.  The school routine is altered with end of the year exams and events.  They hadn’t removed him to a quiet space in time.  He was overwrought and lost it to the point of literally barking at a teacher’s aide.  They gave him a detention.  He was so upset by all of this we had a massive meltdown, one of a spectacular string that has left things broken, walls dented, spirits frayed.  We could not get him out the door to school.  The SENCO reached out, asked for him to come in for just a short hello, and he did.  They wanted to know what is bothering him.  He told them he was worried that Mummy has been in hospital.  They told him it’s good to go to hospital to find out what is wrong so they can help Mummy feel better.

Then the next morning when I woke him up he asked me in a sweet voice, “Are you becoming a gran?”  Images flashed through my head.  The bags under my eyes.  The pale skin.  The oversized shirts, shorts and black socks.  The day earlier he told me I should buy hair dye to bring back the blonde.  These are all little ways for him in his indirect way to ask me some big questions that he cannot form.   How many times in the past two months have I told him I didn’t feel well, that I was tired, that I would do something later, not now.  I felt sad for my son, feeling the weight of this on him when he is so young, so needy, so fragile still.  I know it is affecting both of our sons, but our youngest with FAS is simply unable to cope when I cannot cope.

The pressures of keeping on keeping on can be overwhelming when we ourselves are not feeling well.  The confusions this unleashes for a child with FASD are very real and we must deal with them.  We must deal with them when we are tired from yet more vague inputs from distracted doctors.  We must deal with them when the room is spinning and our heads are bursting.  We must dig deeper than we thought we could.  It is something I must do, any parent would do.

I am no expert.  And yet, I would bet a million pounds that every family with a special needs child has its core internal strength pulled and frayed to the point of snapping at some time or other.  I would bet that even the most positive people of good will find themselves at times like these stretched so thin it feels like it will all fly apart.  In our world, things literally sail across the room, break, and smash when we can no longer keep it all together in the way we know we should.  Our son thinks it’s his fault.  We know better than to blame him.  This responsibility makes a hard time even harder.  But I cannot turn away from that.  And I am not even very sick compared to some FASD parents I have been in contact with via social media.  I feel for them.  I feel for us all.  I feel for the children most of all.

I am a strong woman.  I can (kind of) understand my headaches, my dizziness, my strange ear sensations that leave me overexposed to shifting sounds and disoriented.  It may be due to something tangible or more likely something harder to pin down, like a virus.  Even though I understand it and the range of possibilities, it is bewildering to me.  The way I have been feeling has given me new insights into what it must be like for our son when he is inundated with sensation and overwhelmed by it.  My inability to stop the conversations around me, even though I say again and again – I can’t hear you, please slow down, I can’t remember, I am not thinking the way I usually do.  The way people look at me, they way they don’t really get it that I am not hearing them.  Then I get angry.  I get crisp. I sulk away and watch another stupid TV show about saying yes to dresses when I really truly could care less about what some spoiled rich kid wears down an aisle.  I watch it because it is mind-numbing and easy. I don’t need to hear it all, it’s visual.  Yes, I am gaining new insights into my son’s daily struggles.

I have been thinking lately that The System is simply not kind.  It’s not kind to leave a mother wondering for nearly 8 weeks as to what may or may not be causing troubles inside her head.  It’s not kind to hand me a printed sheet rather than a hug as I leave an MRI room, telling me I will have an appointment in 4-6 weeks to tell me what they may or may not have seen as a result of all that pinging, jackhammering, and pounding.  It’s not kind to ignore the worries and shuffle people out the door.  Maybe it’s the British stiff-upper-lip that has kept ships from sinking for eons, but it’s not kind. And yes, I will get answers sooner than 6 weeks because I will fight for myself in this cold system.

But even more importantly than my own struggle, it’s just not kind to make parents fight so hard to know what is going on inside their children’s brains.  At the same time I am grappling with this personal issue, I am reminded daily that people still have to really battle hard to get someone to consider diagnosing a child with a Fetal Alcohol Spectrum Disorder.  It’s simply not kind to the kids – the kids who do not understand why they feel so adrift, so confused, so lost all the time.  Why do we force parents who reach out for help to wait months or sometimes years before someone will help them understand their kid’s brain?  Why do we so easily blame the parents and their parenting styles when we know that there may be more to it?

It’s just not kind.  Months and years in a child’s life are ages.  It’s in no one’s interest to delay.  Early diagnosis increases the prospects for that person’s life.

This is very real.  We know there are many families out there right now seeking a diagnosis to help them understand their children, some with positive proof of maternal drinking and kids showing some of the classic signs of behavioral and other issues.  They are being told by doctors that Fetal Alcohol Spectrum Disorders are often used as ‘the easy way out’.  They are being told that their parenting is the cause of the behaviors.  They are being told they want these acronyms in order to make them feel less guilty.  Seriously?  That is not kind.  No sane person ‘wants’ their child to have irreversible brain damage.  No parent wants a diagnosis of an FASD because it is ‘easy.’   A good parent wants to know what it going on so as to meet their child’s needs and maximize his or her potential for a good life.

Imagine a different system.  Imagine a system where the doctors were our champions.  Imagine a system where the process was more than just stringing together a series of 10-minute appointments over several months, grasping for the little practical bits that can potentially change a life’s trajectory.  Imagine a system where someone stopped the manic battling, and just said, come in.  How can I help you?  What do you need?  How is the little one today? How are you today?

Our brains are complex, ornery, defiant.  I am not for a minute trying to say my recent experiences are the same as those faced by people whose brains have been affected by exposure to alcohol when they were in utero.  What I am saying is that when our brains are involved, the medical community should be kind.  It is not just simply one more organ.  Our brains control it all – from our moods to our expressive ability to our feelings to our ability to self-regulate.  Our brains are the core structure.  If we have problems inside our brains we cannot handle the rest of it.  And sometimes, the simple kindness of recognizing that can shift everything into a more positive place.

I realize these thoughts are a bit all over the place today.  I realize that there is a huge difference between how I am feeling and how someone with FASD feels.  All I know is that having something wrong happening from my shoulders up is disorienting to me in ways I have never considered before.  I have taken my brain and my senses for granted.  I have always relied on a sharp mind and quick reflexes.  I am thankful and very humbled to have this chance to think in a different way, to experience life from a less secure and maybe less privileged perspective.  I have even more respect now for people who walk through this world with such pressures coming at them from inside as well as outside.  I too now have learned to understand the relief of a darkened, quiet room (she types, in a darkened, quiet room).  I have felt my compassion for my son deepen through this process.

To all those out there who are struggling with their own issues as they try to help someone with FASD and to those with FASD who continue on even with all the struggles – here’s to you all, to us all.  If we can’t  find the kindness we wish for out there in the world, let’s at least let it be the one thing we can give in our own corners of the world today.  Today I will greet my son with kindness when he awakens.  I will try to surround us all with it, despite this ringing in my ears, the woozy rocking, and the state of the world around us.  Even if The System is not kind, at least I can (try to) be.  Even today when what I really want to do is bury my head under my pillow.

And with that, I literally just heard the patter of little footsteps.  Here we go…Happy Saturday…

 

 

 

 

 

 

 

 

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FASD Parents Don’t Get Sick Days

beingill

by @FASD_Mum

One minute, I was sitting in the GP’s office, waiting for a locum to give me blood test results.  The next thing I knew, I was a human pin cushion, sitting on a plastic bed, contemplating mortality. It’s been a heck of a weekend.  Never fear, the worst has been ruled out (I am not one for cliffhangers). Creating drama is not the point of writing now, from my bed at home.  I just cannot shake the thoughts I had while peeking through a door that too many parents of kids with special needs, including kids with FASD, have looked through.  What happens if mum (or dad or carer) gets sick, maybe even seriously so?

I have encountered an overworked, well-intentioned, bureaucratically inept UK healthcare system that has been minimally efficient but not kind.  I spent 36 hours being led to believe by a team of medical professionals that there was a chance – their idea, not mine – that my world might change irrevocably as a result of the tests they were taking.  They thought there was a chance I had a brain tumor and a tumor in a lymph node.  This was not a knee scrape.  Not once during the 36-hour ordeal, did any medical professional sit with me to explore how I was doing – not as I repeatedly explained when asked by people who did not read the chart about the cancers that killed my mother, the heart problems that killed my dad, the aneurysms that killed my aunt and might have got my mom but didn’t have time, the strokes, the diabetes, the grim genetic heritage I carry.

Every person who took my history looked at me strangely when I could not answer how long I have been feeling run down.  They seemed surprised I couldn’t pinpoint when my symptoms first started.  They asked how long I have been feeling tired and were skeptical when I joked I couldn’t remember a time I did not.  I explained we have some special circumstances.  An 11-year old child with FASD.  A 13-year old son who has been sick on and off for years with Chronic Fatigue Syndrome.  So, no, I haven’t really been paying attention to my own aches and pains.  Maybe I imagined it, but I felt like I could see the boxes ticking in their head, a tired mum, tick, special needs child, tick, probably nothing wrong here.  Except for the symptoms, some of which could not be ‘faked’, some of which I didn’t even know existed, let alone know that I have. Serious symptoms, serious enough to have them stream line me to a bed on a night when no beds were available.  Serious enough to have them wheel men late at night to a different room so they could start a women’s ward right then.

The lovely woman who was eventually moved into the bed across from me has brain cancer, previously had breast cancer.  She told me she is trying to do all she can for her grown up sons and her partner before she faces whatever comes next.  “But at least mine are grown,” she said as the words struck home.  The implication hanging.  It was some really hairy karma that put me in bed across from a walking embodiment of my worst fears, a woman for whom I needed to find comforting and encouraging words. And I did. Or I tried.  I know what brain cancer is, I held my mother’s hand as she died from it, the one cancer that finally claimed the last of her strength.

As they scanned my head I instinctively flashed back to the young, athletic me lying on the beach soaking in the sunshine. Surprising myself at the imagery that came to me, but pleased.  Like bumping unexpectedly into an old dear friend, this other me was there. Reminding me of days long, long ago.  A different me.  A stronger me.  A more optimistic me.  It was comforting and warm.  As the scan clicked over my strapped-down forehead, eyes closed, so many images of sunny days spent on many different beaches flipped by – the beach of my childhood by the sea, the beach of my boardwalk waitressing days, the university lakeside space we called a “beach” on sunny music-filled afternoons, the bright sands and ragged coastline of Cornish holidays, the lounge chairs filled with friends on rooftop pools during my early professional days.  They were all backward-looking images.  I could not for a moment allow myself to think forward.  I could not possibly think of all of my hopes and dreams and unwritten books getting blotted out by overactive cells in an overcrowded brain.

Mostly, I could not think of what a positive result would mean for my family.  Watching re-runs of Downton Abbey on my phone screen, I refused to go through that door in my head. If I had, I don’t think I would have been able to breathe.  I simply could not allow my mind to wander in that direction. I stared out at airplanes landing and taking off, thinking of the places I have been and how no one determining my fate had a clue who I am really.

When it turned out I am not facing imminent death, and after reeling off a string of contradictory and confusing information, the NHS spit me out of their system unceremoniously at 10.15 pm on a Saturday night (I had to remind them in a hallway to remove the cannula). My 36 hours of being brave crumbled, and I pleaded through my frustrated tears. Somewhere out there is a young well-meaning and exhausted junior doctor, whose name not one nurse on the floor could tell me, who bore the brunt of a decade of frustration trying to move this system.

I was begging.  I don’t beg, but I was begging.  Please don’t send me away without answers.  I know how this system works. I have a child with FASD and one with CFS.  I know the months of waiting for an appointment with someone who may not even be with the right specialist, which will then lead to waiting more months.  I know how each person looks only at their little bit of you, through their little prism.  I know how impossible it is for them to wrap their heads around a confusing case.  I know how the system is not proactive, but reactive.  I know because we have two kids with health issues who have each in their way fallen through the cracks.  In one breath she told me if I stayed until Monday I would see a neurologist then but that I had to go home that night as my symptoms were no longer ‘urgent’, and so it would probably take 18 weeks for me to get an appointment with a neurologist.  I told her that is not fair.  I told her the system is broken.  She later came back and said we all know the system has problems but she was tired and she had to go home, she could not find another junior doctor to finish the exam she was trying to do but could not because the equipment was broken, and I should just leave.  I was panicked that for once we had carved out space for me to figure out what is wrong with me, and I knew that if we left that place my needs would be diluted again, this process would drag out, and the demands of my days are so intense I would have no option but to jump back in.

My fears I might fall through the cracks were real, as judged by a phone call at 2 pm the next day from a tired and confused nurse asking me if I had been discharged (apparently they waited several hours to try to figure out why my bed was empty, which is a whole other level of crazy). They had no record of my discharge or follow up, they had not even been briefed verbally by the night shift.  I see the paperwork trail fading.  They will close me out of the system, tick.  Leaving me to swim upstream in a weak state.

When I look at this from a long-term perspective I know I can’t give into the system’s desire for me to just go away without answers.  But the short-term reality is that I must keep on in my daily life.  Our days are demanding as we help our son with FASD navigate the world.  I see the strain lines on my husband’s face.  I see the limitations of relying on friends and family.  Helpful as they are, the strain has been immense on my husband in trying to get through just one weekend without me when under such stress.  I know I am not irreplaceable, I am not that big-headed or vain.  I travel a lot for work, but this weekend was different.  I see what happens when you remove me from the picture if only for 36 hours.  And that scares me more than any potentially aggressive cells might have done.

When I came home at 10.30 pm, our 13-year old brave son was waiting up for me.  He sat by me on the couch.  Being near.  Our welcome-home hug held just that much longer. Our 11-year old son with FASD was spending the second night in a row with his grandmother and aunt, having spent the days with another aunt and her family.  This alone is a very rare occasion, one we usually prepare him for well in advance.  Instead this time it was all last-minute changes and quick planning.  He did well.  When he came home in the morning, his grin at seeing me was the most beautiful smile I have seen in years.  Then he too needed me to sit side by side with him.  He refused to go to his beloved gymnastics, admitting to me the weekend has been “tiring” (his word, a more abstract word than he usually uses, a word that made my heart swell even in my light-headed state).  My husband, showing signs of the weight he has been carrying for a weekend, needed a break.  My boys needed me.  But right then, there really was not much more of me to give.  I need recharging.

Here’s the thing.  Here’s why I am writing this on a blog about FASD.  None of these moments were unaffected by the overarching reality of how FASD has affected our life as a family.  Our son is lovely.  He also has special needs.  We cannot alter his routine without consequences for him and for us.  We really cannot easily ask others to look after him.  He cannot verbalize his fears, so when he heard his mum was in hospital it was like a ticking bomb.  Family who did step in saw a kid who behaved really well for them, and we are proud of him for that and appreciative of what they have done for us. But my husband and I both knew that would not be the whole story.

I read the distress in our little guy’s eyes, beyond that big smile.  I knew this would be a long day.  I saw the fear in his eyes when I told him it was time for gymnastics.  I hugged him and said not to worry, I promised if he went to gymnastics I would be here when he returns.  He didn’t trust that promise.  We did not force him to go.  Instead, with my head pounding, I sat on the floor by him as we googled pictures of mouldy cheese together for a school poetry project.  He needed me physically near.

Those who looked after him for us didn’t see the toys getting thrown down stairs, the hour-long perseverative desperate search for a missing green bandana, the smashing of marble runs, the manic laughter, the tears. The way he needed me to scratch his back. The major meltdown that happened after dinner, the spitting and kicking, the blowout between my husband and I who are frazzled beyond belief. The ringing in my ears, the way I just wanted to curl up with a pillow and rest.

How something as simple as the need to plow through laundry (even with help from my mother-in-law) on a weekend before school starts again after a long holiday caused a whole chain of ‘asks’ that we do not normally ask and stresses at home that tipped us collectively over the edge.  The scene that started with my disregulated son spitting at me, cursing, and knocking the glass of water for his melatonin out of my hand and ended with him sobbing in tears after he saw mummy and daddy yelling.  Then the household-wide aching silence as we all tried to tiptoe around our tiredness and the feeling we have all just gone too far.  The conversation I had to have with our youngest, despite the desire to bury my head under my pillow, saying it’s ok.  Sometimes when he gets frustrated he does things he doesn’t mean and he throws things.  We understand.  Sometimes mum and dad get frustrated too and they yell.  It’s ok.  We’re ok.  I left the room, thinking it’s calm.  Then the smell of sulphur and the realization that our son was striking matches in his bedroom, commandeered from one of the houses where he stayed. And I see he was googling “how to light a match with a lighter” and we realize yet again how serious it is that we keep things calm around here, how even on weekends where mum is sick and in hospital we all must be vigilant, maybe hyper-vigilant at those times.

I know my joking Facebook posts about hospital foods showed a light face.  I know that even still after all this time even close family and friends cannot understand the different behaviors at home, once our son’s game face is released.  I know if we had called any number of people on that post-hospital Sunday when really we (I) needed rest, they would have come.  I truly don’t write this to make those around us feel bad.  I know they would have come.  I write this because I know other families struggle along as we do.  I know there are so many who will “get it.”  Other families who know how very hard it is to ask.  Raising a child with FASD puts added strains on the most stressful times.  Times like these.  When mums and dads get sick, the whole thing can crumble. And of course, that is the fear we all carry in our hearts as we raise these precious and vulnerable kids.  That’s the door we cannot look beyond.  What will happen when we no longer are here?

So, anyway, I am here at home.  Not dying (thankfully) but undiagnosed.  Still feeling like I have been run over by a bus.  Life goes instantly back to “normal.”  The thoughts still swim in my head wondering if this is psychosomatic (though I know it cannot be and now there is medical proof of that).  Still, I wonder, maybe I am making it up, maybe I just need to juggle my stress better, maybe it’s not that bad, maybe I don’t want to go for follow up appointments, maybe there is no point if they aren’t going to tell me anything anyway.  Those thoughts, the difficulty of balancing it all, has my stomach in knots – I was pretty sure of that while staring into the toilet bowl before 8 am on the morning I first came home. That wasn’t any newly caught hospital bug, that was my life.

The pressures on those caring for kids with FASD is immense.  When and if my son reads this on some future day, I want to be clear that I am not blaming him for the added stresses.  He is the last person I blame.  I haven’t googled it, but I would bet that parents of kids with special needs have medical issues that are too often overlooked until they become chronic.  I would bet many marriages don’t weather these stormy days as well as mine can. (And so I will say it now to my husband, I really am deeply sorry for that most recent Scene From Hell. And for whatever one is coming down the line in the near future.)

It can be an uncaring system that we have to navigate.  People defend the NHS, and I do too.  But I don’t excuse it.  Obscene budget cuts have created an institutional failure to thrive.  The people in that system are trying.  Nurses who tell me they don’t drink water during their shifts because they have no time for toilet breaks.  Junior doctors who are talented and well-meaning but who are taking the brunt on the front line of a system that is throwing them to the tigers with equipment that is broken and a lack of resources and options.  Bureaucracy that leaves kids with FASD brain injury waiting years for diagnosis, and once there is diagnosis leaving the families bushwhacking their way through the confusing, disconnected, and few-and-far-between services.  A system that wears down carers to their outer limits, and then regurgitates them too when they need help.

So there we were.  My son and I sat on the steps only 10 hours after my discharge, finishing up his poetry book assignment – one of the most intense homework assignments he has ever accomplished.  It’s really good.  And yes, I scribed for him.  Yes, I prompted him when his brain couldn’t figure out conceptually what was being required.  But the book is full of his thoughts, his quirky humor.  I know that no one else could have coached him through this over the past weeks in the way that I could. We’re a team.

And yes, I helped him mop up the water he threw at me, pushed aside my weariness and rubbed his back as he cried after the most recent meltdown, even as those regretted shouted words between my husband and I hung in the air.  Tiger Mom even in illness, for better or worse.  I am glad I can help our little guy.  I will give all I have to family. Even on days there is little to give.

I just wish sometimes that the government saw past the need to supply far away battlefields and chose instead to give armor and support to those of us fighting the good fights for our kids right here at home.  They have the money. They do.  They just choose to spend it on other things.  I try not to be too political here, but the lack of support for those with special needs and their families is a political choice that does not speak well for a supposedly caring society.  The message is clear: just don’t get sick (especially on weekends).  Soldier on.  Don’t expect us to equip you for this particular battle right here on our doorsteps, inside our homes, in our hospitals.  We’ll spend trillions on “peace and security,” just not for those with special needs or those who are helping them.  Not today anyway. Not fast enough to help our son.  So, we’ll just get on with it.  Because that is our only option.

My heart goes out to all those who have looked through the doors I have faced this weekend.  I share the relief of those who have been able to turn away again, if still unwell, to the daily chaos.  I wish you all strength to find the answers you need to not only go day by day but to feel truly well again.  And for those parents and carers who are through the door – those who have diagnoses and still carry the worries of what will happen to their children – I send you solidarity and share a dream of world with different priorities.  I wish you and  your children true peace and security.  In the meantime, we can only cherish the days we do have. However imperfect, the very fact we are here together is splendid and worthy of celebration.  I know from my parents’ illnesses, and I know from looking into the eyes of those brave people I just saw in the hospital beds and chairs, no matter how bad it is, we have it in us to fight for tomorrow.

FASD, ADHD & meds – what’s a parent to do?

We love a child with #FASD-3

By @FASD_Mum

As a parent of a child with Fetal Alcohol Syndrome and ADHD, you spend a lot more time than you ever imagined possible thinking about how to help your child to focus.  It’s something most of us take for granted, but it is pivotal for a child’s prospects for learning.  And kids with FASDs can’t always focus due to the injury done to their brains.

In fact, you spend so much time thinking about it, that your own life can become blurry around the edges.  You find buried under a stack the addresses for those letters you meant to write two Christmases ago.  You see the corners of the rooms that have not been de-cobwebbed in way too long (Charlotte, are you there?).  You look across the room at your tired spouse, and wonder where the jukebox feeding, sometimes dancing days went.  The months fade into new months and you feel like time is seeping away from you without progress.  And that realizations scares the hell out of you.  Because while the edges of life are blurred, somehow the most important things come into sharp contrast.  Without a doubt, you become consumed with the critical importance of steering your kids through the pre-teen and teenage years.

Of course, I would say that now.  When they were toddlers, I said that was the most critical time.  And it was.  And when they were in primary school, that was most important.  And it was. But I am reminded of a good friend who has been a lifelong educator.  He once told me, after a difficult stint as an intercity middle school teacher, that people don’t spend enough time worrying about their kids during the teenage years.  He felt that was the most important time to be there for the kids.  And it is.  As a person who has always worked best toward deadlines, this phase, this seems All Important for both of our sons.  I am sure that is a natural feeling.  And it must be said I really enjoy this phase of parenting, it’s more interesting in many ways than the cuddle-feed-clean-sleep phase.  It’s more creative in some ways for a parent, and it is great fun to watch your children reinterpreting the world for themselves, on their terms.  You see seeds you planted years ago start to yield some fresh new perspectives.  But you also fear the gaps that you may have left – why didn’t you insist on piano lessons, or Japanese, or Taekwondo?

For our son with FAS, it feels like what we can accomplish in these coming years will either set him on solid ground or leave him mired in quicksand.  We will either give him tools and vocabulary to better understand how to help and explain himself and his needs, or we will not.  We will either give him the self-confidence and self-awareness he needs to learn the techniques and strategies to help him manage his condition, or we will not.  If he is going to beat the statistics, as I firmly believe he can, we need to focus.  He needs to focus.

And so lines I once held dear are blurred.  I swore I would never medicate my kids.  I had more than my fair share to say about the Ritalin Revolution.  I believed parents needed to buckle up and get on with parenting these kids better.  I believed it was unfair to the kids to mess with their brain chemistry.

And yet, here we are.

Our son needs to be able to focus.  If he can focus, he can fly.  Literally.  Today, we saw him in his first secondary school sports competition. This little four-foot-nothing kid who could barely see over the the top of the trampoline was soaring high, competing as well as any other kid.  It was 5 pm.  A child who normally loses focus by about 1.30 pm on a school day stood around for hours after school in a gym he’d never seen before, in a format he had never experienced before, and he competed as an equal.  Confident and accepted.  The coach had a buddy system in place for him. I watched with great appreciation as one of the older girls calmly and sweetly kept him by her side, redirecting him when he started to fiddle with something or another.

We sat by parents who were in different ways gently exploring our son’s differences.  I found myself telling one set of parents we have known throughout primary school that our son has been preparing for this moment ever since he was a toddler, practically bungee jumping off our bookshelves and throwing himself onto the couch.  Light-hearted, a bit of a joke.  Less light, I told them about his sensory need for proprioceptive input, and the “happy dances” he did as a toddler, holding our fingers and jumping up and down.  (Yes, I actually dropped the word ‘proprioceptive’ into casual conversation.)  I stopped myself from discussing his full diagnosis with them, wondering if I have missed a moment.  But the wider group of our son’s classmates don’t yet know the diagnosis, or maybe they do and I don’t know it.  But that gym wasn’t the place for that full conversation.

But on the other side of me was a parent from a different school, who recognized our son from a gymnastics club.  She surprised me.  It was the first time I had someone directly say to me, a stranger, that her daughter has special needs.  That opened up for me the next sentence I said, surprising myself, “Our son also has special needs too.”  She then said, “What is his diagnosis?”  Just like that, directly.  I found myself really appreciating the ability to just say it, thinking that maybe it helps people when you are more open about these things.  (Though I then became concerned that she had never heard of FAS, and she said she works with special needs kids.  Realizing yet again that there is a big gaping hole in the education people receive about this condition.)

On one of the FASD Facebook forums, I have recently been in touch with adults with FASD who believe their parents set them up for later addiction by putting them on stimulant medications.  Their stories chill my heart and fuel my concerns.  We have asked experts about this repeatedly.  The doctors insist the levels of drugs are too low to cause addiction and point out that there are many factors involved with addictions, many of which leave this population of kids particularly vulnerable.

We know these drugs aren’t great.  We have watched carefully and with concern what impact they have.  We have been alarmed by previous drugs and their side effects, so much so that we have asked for the drugs to be switched.  We believe some of his more aggressive and distressing behaviors have been because he was strung out from the old meds.  Recently, for he first time in years, we tried two weeks where he was off them altogether.  He was “more crazy, less angry” as our elder son described it. It was lovely to see our sweet son again, we knew he was in there.  It was great to see him eating with gusto again.  But it was heartbreaking to see him literally unable to sit still.  I described it as an engine running too fast (and only yesterday learned this is a term some experts are using in an innovative program for helping kids with FASD regulate, and a study shows it is even having a physical effect of creating more grey matter inside key parts of their brain. We know it’s important to get the line right between FASD and ADHD and if using medications to have the right ones.

This week we upped the new medication to two doses per day.  Our son’s school reported his best level of attention ever.  (The Special Educational Needs Coordinator didn’t realize he had the double dose one day, and told us he was like a different child.) They said it is the first time all year he has focused through to the end of the day.  The positive impact extends into the early evening, as we have seen today at the tournament and as we have seen in a more peaceful home since he started the two doses a day regime.

An adult with ADHD once said to me, “if you would not hesitate to get your son eye glasses to help his eyes focus, why would you not get him what he needs to help his brain focus?”

All I can say, is it is very obvious when the drugs work and when they don’t.  If they were not working, we would not dream of giving them to our son.  Our hope is that we can use the more clarified mental space they provide to give him tools to learn how to better manage his condition, in hopes that maybe someday he won’t need these medications.  But as a kid who is capable of soaring, it seems almost cruel to deny him that chance because we don’t fully understand the medications.  We have to trust somehow that these medical experts do know what they are talking about.

We have to focus too.  We have to focus on the best use of these increasingly limited pre-teen and teen days.  We know the hormonal storms are coming soon enough.  We know big challenges lie ahead.  We want our son to have all the tools he can to face that onslaught.  To do that we need him to be able to focus on his learning now.  We need to bend and stretch every neural connection we can.  We need him to be able to absorb what he can, when he can, while he can.

And we need to celebrate the days when he can literally fly. Days like today when he handed over to me the silver medal his team won, with a smile of pure pride, eyes sparkling.  Or like yesterday (another double dose day), when he came home glowing because he led (yes, led) a team of kids he doesn’t normally work with for an engineering/marble run project that won some award or other.  I cannot tell you how inherently satisfying and rewarding it felt to see him celebrated for these more grown up incarnations of his little kid obsessions.  As with jumping and bouncing, our son has spent years playing with various marble runs, bordering on an obsession.

I cannot tell you how unnerving it is, in its own weird way, to feel that little flicker of hope inside my chest (we don’t after all want to get ahead of ourselves).  But maybe, just maybe, all those hours sitting on the floor chasing marbles – and maybe, just maybe all those hours at the playground and holding hands of a bouncing toddler on a trampoline – were indeed setting the groundwork for tomorrows rather than just filling the time.  And maybe, just maybe, if these pills enable him to focus enough to reach inside himself for the answers and to phrase his need for support in a way others understand, then maybe just maybe the pills too are one of those tools we seek so hard to find.  At least for now, at least during these pre-teen and teenage years.

And maybe, just maybe, at least for now, we need to focus on the outcomes, not on the fears.

Homework is evil

We love a child with #FASD-2

By @FASD_Mum

We spent the better part of half-term calming down our child, chasing around his moods, finding ways to chill him out, de-stress, and reconnect with his happier self.  As he hits his pre-teen years, we are still struggling to find our footing with a new (or more apparent) set of challenges related to his Fetal Alcohol Syndrome.  During this break we also were trying out a new medication regime (meaning, we are seeing if we can take him off 24-hour meds and give his poor strung-out body a break).  But we are not at all convinced the chemical roller-coaster of medication in 4 hour spurts is good for him (since he cannot yet understand it) or good for us (since we too ride this roller coaster with him).

But we managed, even if we did not succeed in keeping him off the meds for the entire holiday as we had hoped.  He even had some moments of joy, including an afternoon spent walking down country lanes with a sweet family who invited him over for a few hours.  He walked two inches taller that day with his friends, feeling independent, valued, and also grown up as he played so well with a 15-month old.

We breathed a collective sigh of relief when he went back to school Monday morning, relatively optimistic (meaning, we at least managed to get him into his uniform on time) and presumably ready (meaning we had cleaned out his backpack and pockets for all illicit candy and extra change and old drinks bottles, his jacket was recently washed, shoes looking relatively spiffy, etc.). He was fortified and ready for this next half term.

Or so we thought.

By about 8.30 am we were quickly notified we had screwed up and failed to attack homework projects that were supposed to be done over the holiday.  Threat of a detention was now hanging over his head 15 minutes into the new half-term.

To be honest, we were so busy surviving over the half-term, we didn’t think to look.  The school’s state-of-the-art homework app has somehow reset itself on my phone and, no, I have not yet figured out where I wrote down the PIN.  We had arrived at a deal with the school last half-term that since homework was such a battle at home, they would seek to do it with him during the morning clubs, homework clubs and extra time they have in his schedule for one-on-one time.  We are supposed to do an online reading program at home, but before break they said they are revisiting whether or not that might be too easy for him.  We simply did not realize there was a bigger project due and they had not flagged it for us in the crazy days prior to the break.

Fast forward to home time after school on this first day back when, to avoid the detention, we were supposed to do the project.

Not. A. Chance.

It’s hard to describe how gripping this can be when our son’s more primal defensiveness gets stirred up.  This child was not going to sit down and do this homework.  Not then, not that night, and as I have just discovered, not this morning.  There is no room when his brain gets this stressed out for creativity, for problem-solving, for negotiating. When this defensiveness kicks in, it is a full out battle royal in which he is fighting with every fiber of his being to defend himself.  Imagine the ferocity of the terrible twos on steroids.  He is standing up for that which he cannot fully explain, so it becomes a whole body vehemence, an insistence that his will must be heard.

We have been through a very difficult 12 hours as a result of the homework-that-is-not-done.  (I have learned that it is not enough for me to say ‘difficult.’  What I mean is that things have been so rough that my husband and I have alternatively been behind the closed kitchen door, heads hung low in defeat, tears in our eyes.  I mean it’s been some of the hardest days of parenting, and we have been having too many days like this recently.)

I cannot imagine any educator would think this one model was worth the screaming, throwing, breaking, kicking, shouting, poking-himself-in-the-eyes chaos we have just unleashed in our efforts to avoid the detention he says he doesn’t care if he gets.

At root of all of this, I think he a) feels defensive/inadequate/confused, and b) doesn’t understand the assignment.  The idea is to make a model of a Burgess model of city design – it’s an abstract concept of how cities are designed from their inner central business district, to an industrial ring, then lower-income, medium-income housing and surrounded by more green space.  Either his brain cannot handle the abstract concepts of it or he knows something about this assignment that I am not doing right and he cannot explain it to me.  There was mention of Play-Doh, though we had a giant escalation when I brought out the dough.  Instead I chopped up a shoe box, helped cut out concentric circles and mock-ups of various buildings, and was ready for him to help label things.

Not. A. Chance.

We kept the dog safe and scissors tucked away in case they were added to the very many things sailing across the room.  My husband and I were bewildered, pre-caffeinated, and not at our best.

Sure, there are some out there reading this who will know we should have prioritized calming him down.  We did.  Or we tried.  We tried foot rubs, quiet time in the bedroom, time sitting together on the couch watching the umpteenth rerun of Total Wipeout. Last night before bed, we had some lovely head-on-my-shoulder cuddles in the semi-dark.  It was all fine and dandy, until The Homework reared its ugly head. Again and again.

Finally, this morning, we decided to put it away and not do it. We agreed to send in a note to the school.  Fifteen minutes later, our son said quietly, “Fine, I will do the homework.”  Foolishly, I became optimistic and cheery.  He came to the table, scrawled one label on the model, I asked him to write more neatly, and zoom, we were off again, worse than before.

“I hate gold awards anyway!” our son shouted at one point.  He must have seen some of his classmates’ models.  He must know what I was trying to get done in the short space and with his limited patience/attention span was not right, not good enough.  Yet again, I feel sadly like we have set him up for failure.

Interwoven in all of this was a fixation about how he needed to ‘style his hair’ – something he has been saying since he came home from school yesterday.  We don’t know if this was due to comments from friends yesterday or if it is regression because he found other things hard.  But that was his primary focus over night.  He needs a haircut, yes, but there is no ‘styling’ that can physically be done to this hair now at this length, at least not with my meagre skills in this area.  An answer of course that did not meet with a gentle reaction.  (This is not a diversion but a continuation of an old/ongoing story.  One of these days I must write a piece that focuses solely on the major impact that hair, wigs, hairstyles, bandanas, scarves and hairbands have had on our world, a fixation that has revived itself since he came off the 24-hour medications, probably due to sensory needs.)

So, where are we?  Wiped out, drained, defeated, scared.  My husband took him to the tow path by the river for a scooter ride to hopefully get out some of this negative energy before school.  We are ready to up the level of meds now to 8 hours a day, though we are worried that this violent reaction may be a growing side effect yet again to yet another stimulant medication.  We are worried that we cannot keep up with this escalating distress.  We are worried that our professional lives are suffering as a result of this disequilibrium at home.  We are concerned that it took 45 minutes to convince our son to get dressed for school, to repeated and heartfelt screams of “I hate school!”  No parent wants to force their kid to do something that so clearly is disturbing him.  I have just heard from my husband that today was by far the most extreme behavior en route to school, complete with kicking, spitting, hitting, and verbal distress, though he finally settled down to finish the model with the assistant at school when he saw some of his friends touching up their models.  So, hopefully, detention at least has been avoided.

The hardest part of days like today and yesterday is when they hit you when you least expect it.  This time, the trigger was a homework assignment.  It is squarely our fault that we did not catch this, that the communication with the school fell through on this one, that we pushed on with trying to do it despite knowing he would have an escalating reaction.  His brain injury makes it impossible for him to track due dates and to remember such things reliably.

But seriously, homework for a kid who uses every ounce of his being just to survive a school day?  It certainly is not educational.  It feels destructive and counterproductive.  There are not enough hours in his day to decompress.  Our work at home should be focused on reinforcing his ability to walk through those school doors in a positive frame of mind, fortified and ready for the day.  For our son, that task is more important than any model made of clay or old shoeboxes.  That self ease is what will allow him to succeed academically since for him to learn he must be relaxed.

I used to love homework.  I would stay up until midnight, overachieving and stretching my mind.  I never thought I would say this, but I have learned that homework has a Dark Side for some kids. It’s not helping, that’s for sure.

 

 

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.

Diagnosis: What Then?

20150422_DiagnosisWhatThen

by @FASD_Mum

When our son was first given a diagnosis for Fetal Alcohol Syndrome, the knowledge shocked, immobilized and burned as it began to sink in. Day by day, month by month, we absorbed the news that our son’s brain had been damaged while in utero, and all the therapy out there could not change that fact.

It’s now one year later, and we are emerging from what I believe was a depression brought on by the news.  We continued to function, somehow.  We continued to seek out information. We continued to do everything we could to make our son’s days productive, educational, and full of love. But we were also told flat out that day that the UK has no “post-diagnostic protocol” for FASD.  In the same session where we were told that our son had irreversible brain damage and would need support for the rest of his life, we were told there is essentially no medical help available.  A year later, that still boggles my mind and, if I am honest, leaves me bitter.

Fetal Alcohol Spectrum Disorders are not ‘new.’  They are widely studied and understood in other leading developed countries. UK policy is sorely out of step compared to countries like the US and Canada, where it is taken seriously.  The excuse given is that there is not enough UK data upon which to base policy.  That is a cop out. Fund the studies. Fund the clinics that have the expertise to provide a diagnosis. In the meantime, there is enough known about its prevalence to immediately begin to meet the needs of those kids in the population who through no fault of their own bear the weight of this hidden disability.

It is inconceivable that in this country that prides itself on its pub culture, that every GP is not given proper training on how to spot the symptoms.  It’s inconceivable that alcohol is not properly labelled, and that young women are not educated on the dangers their nights out might pose to their unborn children.  It is inconceivable that educators are not given mandatory training in how to address the needs of these kids, who can have difficulties with executive functioning. The excuse is of course that there is not enough data – but I would bet my life that if a proper assessment were done every single larger school in this country has undiagnosed children under its roof.

It is inconceivable that parents who have waited years and years to understand their child’s problems can be told that their child faces a lifetime of disability – but that there is no medical protocol on how to address that brain damage.  We have had not one additional intervention from the NHS since that day. We have been the ones to bring educational materials into the schools.  We have been the ones to dig deeply on the internet to begin to find the pockets of hope (despite being warned by UK experts to stay away from North American sites as the information is ‘not relevant’ here in the UK – which is of course ridiculous, since science transcends international boundaries ).

We have been told to accept the test scores slapped upon our child, despite the known weaknesses of those standardized tests on kids with attention and cognitive problems, and without any sort of additional help being offered on how to maximize his potential.  We see the statistics on how many of these kids grow up to have drug and alcohol problems or end up in jail.  It is inconceivable that the government doesn’t think it worth the time or effort to put in place proactive measures that could help prevent this cost to society.

Our son is sadly not as unique as he is made to be.  If he were missing an arm or a leg and not some neural connections in his brain, if he were blind or deaf the ‘system’ would be addressing his needs.  It’s time for the UK to face this unrecognized and totally preventable epidemic.