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.