When the Flu Isn’t Just the Flu – What Happens When an FASD Caregiver Can’t Cope?

Blog_Flu

By SB_FASD

There I was, flying along at a fairly fast pace, feeling excited about the new year and really encouraged by what seems to be a possible paradigm shift in the UK with regards to FASD. OK, and yes, maybe also a little overwhelmed by the enormity of what it could mean if we collectively get this right for the lives of so many who have been ignored for way too long.

And then, three weeks ago, I caught the flu. It smacked me in the face and cut me down at the knees like nothing has for a long while. A few sheet-drenched days of fever, chills, splitting headache, dizziness and weird vision that had me thinking something worse might be happening inside my head. Flu followed by secondary strep throat and chest infection. A winning trifecta. A pulled muscle in my back from coughing too much. Unable to eat properly. The inevitable delay in getting the NHS to cough up any antibiotics. A lovely trip to A&E on a Friday night to ensure I had not stupidly poisoned myself by not realising American acetaminophen is the same as British paracetamol. And through all of this, trying very, very hard to ensure our 14-year old with FASD and his 16-year old brother with Chronic Fatigue Syndrome did not catch my plague. Praying that my husband – who was key to keeping things afloat over the past three weeks – didn’t catch anything either. He and our 14-year old had flu shots, thankfully.

It’s been three weeks now. I even have a bed sore to prove how pathetically holed up I have been. There’s nothing quite like that to make one feel old, worn and bemused. But as I start to feel human again, I am feeling positive about some things and scared about some others.

A few years ago our son with FASD would never have understood my need to stay segregated from the family. He would not have been able to empathise with me. He would likely have escalated frequently because the confusion and anxiety would have been too much for him.

But, as a family, we have survived these recent weeks. A few moments come to mind, some good, some not-so-good.

While I was in the midst of the worst of the flu, our son wasn’t fully understanding why I could not help him bathe and get dressed for school, as I do most days. I said very directly, “Look at me. Do I look healthy or do I look ill?” And the poor kid stared at my haggard face and burst into tears. I guess I was trying to be literal in helping him to ‘see’ me but it was not my finest moment. I scared him. His eyes were so distraught. I saw in that moment what would happen in his world if I were no longer there. It scared me. News reached us that a good friend and colleague passed away at the same time as all this was happening. That news and the look in my son’s scared eyes left me devastated during the height of this illness.

About a week later (when the worst of the flu morphed into the cough/strep phase), my son and I crossed paths in the kitchen after school. In a very quiet voice he asked, “Are you feeling a tiny bit better, Mummy, just a tiny bit?” My heart melted at his gentleness, at his compassion. At his need for hope.

Another day, when it was just the two of us in the house, I heard him moving quickly and making some panicked noises in his bedroom. I could tell something had seriously distressed him. I crawled out of bed to see what was happening. He had a 2-litre bottle of water in his room and had spilled about a litre of it all over the floor. He thought quickly – he gathered towels, he removed the wet duvet, he understood the danger of the wet wires, even as he was teetering on dysregulation. I reassured him how proud I was that he knew the right things to do and I helped mop up the remaining mess and change bedding (while hacking and sweating all the while).

Then, a couple of days ago he had been trying to find something for a video he was making. Hours later he said to me in a baby voice that there was a problem with a light bulb in his room. It took a bit of deciphering, but I finally worked out that when he couldn’t find what he was looking for, he had whipped over his head a phone charger that hit and broke a light bulb in his ceiling light. Over the past three weeks, his room had become an absolute pit without Mummy in there every day tidying it up. So the clean up of the broken bulb was a bit more intensive than it might otherwise have been. I had to clear the floor so I could vacuum up the broken glass. Maybe this doesn’t sound like a ‘win’ but it was. A few years ago this would have been all-out chaos, the entire room would have been literally smashed up. I would not have been able to handle the scene in a weakened state. Instead, we dealt with it, he left the room (his idea) when I started to vacuum as we both know he can’t cope with the noise.  Peace was restored relatively easily. He coped with waiting for new bulbs until his dad could get to a shop.

There is a lot to be thankful for in these fairly mundane stories. When Mum goes down, things can fall apart fairly quickly but this time this house, this house has stayed floating.

I see the weariness in all their eyes. I try to listen to stories from school. I try to show interest in the video of the extra large gummy bear with a heart in it. I nod when being told about some twist in a video game. I take baby steps to reengage. But this mum has been lying here watching box set after box set trying not to think about her mortality. (It’s especially hard not to when the GP seriously thinks you may have OD’d on paracetamol/acetaminophen and sends you directly to A&E for emergency blood tests.)

The weight of it all sometimes can’t be ignored. I find it hard to walk the line, trying not to be dramatic but acknowledging how very ill I have been is important to our family’s wellbeing. Being an additional needs caregiver is a tall order sometimes. And sometimes, sometimes we can’t do it. It’s hard in any household when a main caregiver is ill but it has a more profound impact in our house. The strains are magnified. It all is just that much harder to cope. And still, not everyone ‘gets’ it.

I feel lucky to have a network, a friend who can come over at a moment’s notice when we were sent packing to the A&E. I feel lucky that there are family members and friends who check in. I feel lucky to have employment that allows me the ability to recover rather than rush back into the fray before I am strong enough. I feel incredibly lucky to have a partner in crime who stays close and who looks after me. Even still, we have been barely getting by, feeling quite isolated and like people didn’t really understand just how hard this has been for our entire family.

But too many are out there who don’t have any safety net. Too many are struggling on this fine edge between coping and not coping: people who might not yet have the diagnoses and therapies in place that our son and our family have accessed, people who might not have the insights into alternative parenting strategies and appropriate support in school that have turned around our family’s trajectory. People who are where we were a few years ago but who don’t yet see the glimmers of hope we found.

What is out there for those people when they hit that point that I hit where they can no longer keep their heads up?

I do worry about the future. It scares the heck out of me. But I see these small signs of progress and I cling to them. I hold fast. In a crisis of spilled water, our guy knew what to do. That makes my soul sing.

I have sorely missed the hustle and bustle of being out there in it all with my boys. But there is some hope in the fact they all have gotten through this, in knowing that today after years of really difficult times we are stronger than we were.

Self-care is going to be my new buzz-word. I fear I was too worn down and that’s why this knocked me so hard. And next year? Next year this ageing body will be first in line for a flu shot.

The entire FASD community is fighting a life-and-death battle for systemic and lasting change. But we also have to remember we are all of us first and foremost on the frontlines in our own homes, and sometimes that is more than we can handle alone. It shouldn’t be so hard. And we shouldn’t judge when some find it overwhelming. This is exactly why society must put in place more funding and more supports for families affected by FASD. Whatever superpowers we may convince ourselves we have, we are in the end just human.

Fighting Fear

Blog_FearOfFutureBy @SB_FASD

Help me.

I am a strong woman, from a long line of women who don’t back down or shy away from hard times.  But one thing has the power to bring me to my knees and that is fear for my children’s tomorrows.

The day we received the diagnosis* for our youngest son, my picture of the future imploded.  I nearly suffocated with the news.  We were swimming, uncertain what came next. We dove into Google where I soon kept coming across that one horrible image that is shared everywhere comparing the brain of a ‘normal’ child with that of a child with FASD…maybe you’ve seen it – that image where the folds of the brain seem all flat and shriveled, like the future I saw slipping away.  That photo knocked the wind out of me.   The post-diagnosis period was hard.  It took a long time to get to solid ground.

It took way too long for me to learn that photo no more represents my child’s brain than a flat and two-dimensional landscape represents my child’s future.  (While people share it with good intentions, the photo is an extreme case – a research photo that should perhaps never have escaped medical journals.  No one can live with a brain that looks like that.  It does show the damage alcohol can do when it does its worst, but I will not share the image in case it sets someone back like it set me back at a time when I needed to see forward.)

Fear of the future.  It’s always there.  We can put on a game face and we can meet the challenges head on.  But in a world where even doctors refuse to diagnose and support people who face this life with brain damage due to prenatal alcohol exposure, this journey deflates even the most determined of us all.

It’s pretty darn hard to get up the gumption again and again to push for support and services when those pushing back have degrees dripping off their walls.  The internal scream just builds and builds until my head is reverberating with the thought – this is so unfair!  This is a medical issue.  My son has Fetal Alcohol Syndrome, the leading cause of non-genetic intellectual disability in the Western world as noted in a report by the British Medical Association.  It is one of the Fetal Alcohol Spectrum Disorders (FASD).  FASD is real – it isn’t nothing, it’s not just ‘a label’ to excuse ‘bad parenting’ – it’s a lifelong brain-based disability known to have more than 400 co-occurring conditions.  It leads to devastating secondary disabilities if the underlying needs aren’t met.  And yet parents, carers and guardians are often asked time and again why they want a diagnosis by people who should know better – as if the diagnosis is some kind of optional add-on rather than central understanding needed for people to navigate their lives.

Why isn’t the medical field out there ahead on this, pushing prevention and early detection rather than making family after family feel inept, inadequate and undeserving of diagnosis, treatment and support?  That’s a serious question, one I am still waiting for someone to answer for me with anything that doesn’t smack of stigma-laden prejudice, self-centered justification of a pub culture that can’t look itself in the eye, or a burdened bureaucracy prepared to sacrifice some of its most vulnerable in the name of saving some small bit of money now despite knowing it will cost more in the long-run at the expense of too many promising young lives.

Fear of the future?  Heck yeah, when you are staring out at this world knowing at some point in the natural order of things you will die and your child will live on.  Knowing he will live on in a world that doesn’t care to understand him or his disability, a world that seems more likely than not to throw him in jail rather than support him or make accommodations for his needs.  Fear?  Darn right I am fearful.  I see the shadow in people’s eyes, as this sweet young boy turning toward adolescence is starting to lose his balance, getting swamped by the hormonal storms coming his way, not fitting in the boxes society has lined up for ‘good boys.’  Fear?  Oh yes.  I fear.  I hear too many stories, feel the anguish of too many lost young adults and families when these young souls get caught up in the chaos of young adulthood, the challenges of being emotionally and socially unready in a world that wants them to grow up faster than they are able.

Frightened and fearful.  Yes, that is me.  More times than I may seem.  But I refuse, downright refuse to let that fear stop me from doing everything I possibly can to create the best possible chance for my son to have the future he deserves.  I will stare down anyone who gives him ‘the look.’  I will drown any professional who doubts his right to services with enough paper and proof to convince them to either deal with his FASD or refer him forward.  If someone tells me he is ‘incapable of learning’ as did one educational psychologist early on (pre-diagnosis), that person sure as heck will never be within a mile of my son again.  I will fight against this fear.  And encourage any others I can to hold tough, stand tall, push forward.  Because together, collectively, we can change this.

We are afraid of the future, yes, but we focus that fear to make us more powerful and stronger advocates, determined to learn what we can to create the best possible outcome for our son and the other children with FASD who deserves a chance.

But let’s be honest.  It is lonely and scary to stand where we are on the near edge of the adolescent years.  There is a way to bridge the wild waters of the coming teenage years.  Even as I know the fall down can be hard and brutal, I know there is a way to make it across.  I have the honour and privilege to know adults with FASD and their families who have made it to the other side.  They are good people living good lives – contributing to society in all kinds of ways.  They are loved and loving.  Their lives may not be easy but they are profound. They have truths to tell and songs to sing.  No, I can’t – I won’t – let the fear paralyse me now, or we will stumble, fall, slide.  I will not get caught up in the trap of negativity.

I keep eyes forward.

I walk side by side with our son.  Come what may.

He struggles against me, yearns for an independence he cannot yet handle.

Every step scares the heck out of me.

I hope (and yes, for him I even pray to whoever might be listening) that this walk across these teenage years will be gentle.

If he is in trouble, may he get help not judgement, compassion not intolerance.

If he strays into dangerous waters, may someone offer him a lifeline and not an anchor.

If he loses his way, finds himself drifting or spinning out of control, may someone ground him rather than send him further away from me.

May he not get tangled up in something that can drag him down.

If he calls for help but in a language others can’t hear, may someone see his shining soul and recognise his innocence and bring him home.

This boy had to fight for existence without love for the first 16 months of his life.  The world has already proven once to him how cruel it can be – it left him speechless, untrusting, hungry for something more.

Please, let me suppress this fear long enough to get him to solid ground.

Help me help him.

——-

[*If you are new to a diagnosis – please see this resource: Information for parents/carers following a diagnosis of FASD by Dr. Cassie Hunt, Highly Specialist Clinical Psychologist. You don’t need to flounder as much as we did.]