When Going for a Walk is a Radical Act

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By SB_FASD

Stop presses!

Breaking news!

I went for a walk today.

Not a going-to-buy-slime-ingredients walk.

Not a this-dog-is-climbing-the-walls-and-needs-to-get-out walk.

Not a going-to-catch-the-train-for-work walk.

No, this was an honest-to-goodness walk. Alone. Just for me.

They talk about muscle memory. My body remembers. I once ran hard and smoothly over cross-country courses, around the lines on painted tracks, on beaches and up and down steep hills. I was, once upon a long time ago, a runner. When I stopped running, I used to go for intense walks, every morning at a fast pace, before I even had a coffee.

I was driven, in part, by the horrible illnesses my dad faced through those years. Heart attacks. Surgeries. Diabetes. Amputation. Strokes. Feeding tubes. Early death. Ironically, the closer I get to his age of death, the more lax I have become about my own health.

I can talk a good talk about the need for parental wellbeing when raising a child with FASD. I did so in front of hundreds of people over the past two weeks. Hypocrite.

So today, today rather than losing myself in emails or burrowing deeper into the pillows, rather than finishing that steaming cup of tea I had prepared, there I was tying my laces, thinking how nice it would be to wear out, once again after way too long, a pair of running shoes.

I went at my pace. Realising all the while what a luxury it is. I saw the texture of centuries-old bricks. The sun peeking over rooftops. The vibrant colours of spring flowers in gardens across this gentle town. I even saw the milkman. Such a cliché! But I did.

I felt my own heartbeat. I was sweating. My muscles remembered when this was easier, faster. That old determination to not stop until the finish line rose up in me, even as I contemplated the poetic beauty of living up an incline so that returning home is always an uphill battle that can, if I don’t pace myself, leave me breathless even before I arrive to whatever might be waiting there for me.

I stood a few moments, breathing deeply, slowing my heartbeat. Just standing on my front drive, looking at the overgrown garden, thinking how rare it is for me just to be out here like this. Quietly looking. Usually I throw back my shoulders and dive in.

But this morning there was no rush. While the dog looked at me accusingly, the rest of the house was still asleep.

It flashed through my mind that yes, I could do this every day. But I don’t. Maybe I will now. Or maybe I won’t. Somewhere in the last couple of decades my body started owning me and not the other way around. I don’t know if my will can reclaim this wreck, but maybe, just maybe I will try.

So, why is all of this in a blog about raising a child with FASD?

Because I noticed yesterday how hard it was for me to bend over the bath to help brush out his tangled hair. Okay, it was quite tangled and it took a long time, but still, I felt stiff. I felt old. It was hard for me the last time I changed the sheets on his bed, the mattress is on the floor. I was sore getting up after I spent 30 minutes the other day literally scraping slime off his carpet with a knife and hot water. He wanted a foot rub two days ago after getting thoroughly wound up after a visit to the doctor about a rash on his arms, chest and back that needs medicated cream. I was too tired after a day in London and found an excuse not to do a proper foot massage like I would normally have.

I can’t grow that old yet. There is a great deal of work to be done before I am ready to step out of this picture. Our little one still needs hands-on active parenting. And I need to be able to do that for some decades more yet. So no, my walk was not simply selfish.

But equally, my every move cannot be about the three males in my world. And I really do feel sometimes like I have lost a bit of me.

I know I am not the only mother to feel this way. I know I am not the only 50-something parent to feel this way. I am not having a midlife crisis. I just simply went for a walk this morning. And for me, for however it is that I got to this ridiculous place, that was a radical act.

And yes, I am pretty sure I am going to pay for this. I am ready for my muscles to ache a bit in their own rebellion. Those muscles do have memory and they are already starting to remind me that it was not long ago I could not rely on my left side following some odd neurological symptoms. My leg had become so weak I would not have been able to walk this far back then. My muscles are reminding me that my back, neck and shoulder used to be so locked up I had trouble just sitting in meetings, that I needed injections and physical therapy to help release the movement. Yes, my muscles are a bit surprised at this morning’s turn of events.

I have come far as this whole family has been climbing out a dark hole we had been falling into just a few years ago. We weren’t doing so well not that long ago.

This blog is called ‘FASD Learning with Hope’ for a reason.

I believe with every ounce of my being that holding onto hope in the dark times is the only way forward. I have had the chance over the past couple of weeks to look into the eyes of some people who are still in those darker days. It makes my heart ache for them. My muscles remember those days too. How tense my whole body would become, not knowing if I was likely to get hit or kicked or spat at when simply walking into a room. My body remembers the high alert, rapid heartbeat, the cascade of stress hormones of my own fight or flight instincts kicking in as hinges were broken on doors, holes smashed through, CDs hurled with force enough to shatter them.

But it also remembers the warmth of a tired and weary body relaxing into mine. Even as a toddler, I remember the way it felt when his out of control, flailing, screaming, eye-gouging distress would finally release and he would lean into me for the comfort his little self didn’t know how to find on his own. A little toddler, denied those mummy cuddles for the first 16 months of his life. Oh yes, my muscles remember that feeling of protectiveness of that little lost toddler, that worn out child home from a confusing day at primary school, the overwhelmed pre-teen at wits’ end after another impossible day at mainstream secondary school, and now our more stable teen, who still leans into mum for a quick hug of reassurance when he knows he has been teetering at the edge of dysregulation.

Motherhood is a physical state as much as a mental state. I had not been prepared for that with our first child. I was independent, in control of my own body. I pushed my body to excel. To run 10 miles just for fun. Or to meet some random finish line I had in my head. I welcomed the hypnotic rhythm of my feet pounding the pavement, arms swaying easily with the motion. I ran because I was part of a team but only dependent on and responsible for my own control of my own body. But as a mum, even when still pregnant, I remember thinking how my personal space has now been invaded, taken over. It was a shock that it was such a physical thing to hold an infant, a clinging toddler day after day after day after day. You physically feel their absence when you are away from them.

It’s how it’s meant to be. And yes, my muscles remember that too.

But even still.

Today I went for a walk just for me. And even if I don’t do it again for another decade, I did it today and that claiming of ‘me’ time was hard fought for in my own head. (No one has stopped me from doing this previously.)

So, for today, for this moment, I will claim it as a success. And I encourage everyone out there to find a few moments to reconnect with yourselves. Go for a walk or watch the steam over your cuppa. Whatever it is, wherever you are, claim a little sliver of this day just for you and remember to let your muscles remember, within you there is strength.

——-
The Huffington Post UK published a shortened version of this post on 27 May 2019, “For A Special Needs Mum, Even A Walk Can Be A Radical Act Of Self-Care

 

 

 

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

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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.

Take Care

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By MB_FASD (and a side note from SB_FASD)

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

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

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

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

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

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

I did nothing.

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

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

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

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

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

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

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

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

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

Take care.

*********

A note from SB

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

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

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

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

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

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

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

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