The Lonely Parent

Blog Alone
By SB_FASD

I have been trying to suppress my pity party for days now. It’s not anything dramatic. I almost feel a fraud. I’m not crying into my cup thinking “poor me”. It’s just this emptiness I have been feeling as the parent who is more times than not the one left at home.

When I look out there at the lives that people I love are leading, I realise I am the one who has dropped off chat lists, I am the one who is assumed to be unable to go somewhere. I am the one staring at the TV or computer screen again on a Friday night while our youngest is in his bedroom doing his multi-hour wind-down before he manages sleep. I am by default the adult who doesn’t go to the show, the drinks, the meal, the shopping excursion, the movie, the trip, the volunteer activity, the committee, the family event.

It’s especially obvious at night. Our son’s FASD (and the trailing off of his daytime ADHD medications) makes sleep a challenge and while our evenings are about a zillion times better than they used to be, they are still a bit of a minefield. We haven’t had a major blow up thankfully in a very long time, but things can still tip into a negative loop fairly quickly. It means I can never really ‘relax’ in these evenings. I have learned it’s best to back off, let him set his own environment for the evening, to not stress if he hasn’t eaten his dinner, to provide access to generous healthy-ish or at least calorific snacks and pretty much just leave him to it. This is nowhere near as ‘hands-on’ and demanding as it used to be during years of very, very trying night times.

I can do more to make this evening time to myself meaningful. Of course, I can. I could be doing lots of things – crafts, reading, Skyping. Cleaning would be a service to humanity around here. But so often I am just so deeply tired after giving my all to the day and an intense job that the blank stare at a mindless show is about all I can muster. And if I do anything too out of the ordinary that then can also escalate things. It’s best to be quiet and vigilant.

The reality is I find myself feeling unfit for socialising so often anyway. On the rare times I am able to go out, I am not able to be the person I want to be. I feel the heaviness that I carry with me and I see it reflected back in the faces of those I speak with. Meanwhile, I see family and friends with their inside jokes and giggles and I miss the younger carefree me who would be out most nights just hanging out and having fun. I can’t tell you the last time I went out and just laughed.

I try not to wallow in a negative mindset. The reason I finally gave myself permission to write this post is that I know I am not alone in feeling like this. It’s not comfortable to talk about personal feelings, as we are all supposed to put on that smiley face and not admit that there are times when this life isn’t great. Maybe by my opening up about feeling lonely and left behind, others will too.

Compared to many raising children with FASD who lack any sort of network at all and who are facing crisis situations that thankfully we are not experiencing at the moment, I know I have zero right to feel down. At the end of the day I do have a lovely network of family and friends who are here for us if we need them. I have a partner who is here (and I know he is tired too).

I am not really ‘alone’ even though I can feel lonely.

If I sent out the bat signal right now, there would be people at our door and I am so deeply thankful for them. I am not criticising them. Not at all. People are there if I reach out.

What I am talking about is something more subtle. This withdrawal from ‘normal’ socialising has been building over more than a decade. It’s maybe happening a bit more now that our son is older and has retreated more into himself. It’s less easy to get him out to social activities.

Maybe I am only realising it because things around here are easing and I have the mental space to even think about it. I am becoming acutely aware of the conversations of a more diverse, rounded and full life that happen around and behind me even when I am out – literally as happened at a café just this week when I felt lost in a sea of chatty conversation and I snapped. (We do have a regular Friday morning coffee with family and friends that is the main social lifeline in my world, but often I can’t make it due to work). There was this buzz of ‘things happening’ and I felt so out of step with it all. The one Friday night I did get out recently, I felt the same way.

The years and years of ‘connections’ have deepened between others around me, and as each year passes I am that much more ‘disconnected’.  Facebook, with all its warts, has become my place to have a giggle,.

I love my children and my husband and my family and my friends. I have a blessed life. I especially feel bad writing about this because I know it’s even harder for our son with FASD who has trouble socialising for a range of other reasons.

I am not complaining. I am trying to explain.

This sidelining happened and deepened over a long period. That is the realisation that has surprised me lately, hit me hard. It’s like everyone out there is on a faster highway and I am over here on the gravelly two-lane road that runs alongside it, going in the same direction but watching from a different viewpoint, in a time warp. And to be fair, our lane is slower, bumpier. While others’ kids are careening toward their future, we are parenting as for a much, much younger child. Those different speeds have become more apparent as time goes on. There’s a reason for that, teens with FASD diverge more from their peers than when they were younger.

So, yes. The reality is that my reality is different. Our lives are intensely focused on the needs of a sweet, loving young person with FASD who is growing into a young adult on his own time scale, in his own way. There are immediacies and worries and concerns that come with that which are very real. When I am out with people, it feels like if I am true to my life and experiences I suddenly bring this intensity into a room and the atmosphere goes heavy. I feel that character in the Peanuts, Pig Pen, who always has a cloud of dust around him, over him. People love and welcome Pig Pen – he’s part of the cast of characters – but they keep him at a slight distance lest that dust settle on them too. They are more relaxed when he is not there.

I guess what I am trying to say is this: life as a parent/caregiver of someone with a neurodevelopmental disability like FASD can be isolating in ways big and small and that has a profound but sometimes subtle compounding effect on people over time. It’s okay to acknowledge that without feeling like you are moaning (I’m nearly through with this blog post and still trying to convince myself of this).

Just because a family affected by FASD may seem to be in a ‘good’ place, doesn’t mean that it’s going smoothly or easily. It doesn’t mean the pressure is off. They are probably always worried a bit about what’s around that bend. They still need you.

If you are in the wider network of someone with FASD and their parents/carers, send a little hello text. You probably have no idea just how welcome that simple act would be.

When Going for a Walk is a Radical Act

BLog_walk

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.

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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