The ephemeral nature of internet communities

Bear with me here as I wax philosophical for a moment.
Life can be hard when you are a square peg in a round hole.
Everyone needs to feel a sense of community, to feel connected, even at the risk of sounding corny - to have a place where everyone knows your name.

Everyone has moments, time periods in their lives when they don't fit where they expected to, where they feel isolated, a sense of no community - perhaps even when no one actually understands.

In reality no one CAN understand exactly what someone is going through, even if they have been through the same or a similar experience. No one has the same life experience, baggage, strengths, weaknesses to bring to bear on the situation and so no one handles the same life experiences in the same way.

But total isolation, not fitting anywhere, isn't good for someone. You can become too insular, too closed in on yourself, issues can rapidly appear insurmountable. An imperfect fit is better than no fit. That's where multiple groups can come in.

I'm part of an on-line community for those affected by prematurity, I'm part of an on-line community for parents of children with feeding difficulties, I'm part of the local homeschooling association. We have been part of a local support group for families affected by autistic spectrum disorders. And I'm part of an on-line community brought together by either health needs or parenting interests. This on-line community also has an interesting overlap in that those locally meet up in real life as well.

But all of these groups have pluses and minuses - ways in which you do but don't belong.

The prematurity groups are perennially affected by the 'preemier than thou' syndrome. It's controlled but always there. When you have late prem children then often it is hard to fit in, people feel 'it's not really premature, this is' etc.

The feeding difficulties group is interesting - things are well kept under wraps but there is a demarcation between those with tube fed kids and those who are not. I straddle both camps with N and T - although perhaps not for much longer. There is also the issue that both of these groups are largely US based - medications, interventions available, support, supplies are all very different. You can post frustrated that your child won't drink x formula and how on earth do you flavour the repulsive stuff and discover that the 2 formulas you have to choose from are part of around 6-8 options they have there and flavouring modules are easy to make it palatable - only New Zealand doesn't fund them any more so they simply aren't available. Sympathy is available but suggestions for medications, foods and therapies are not.

So we home school - immediately that makes a gulf between us and others. One of the stock questions any adult asks a child is - what school do you go to? That community of parents is no longer available.
The home school group organises events for home schooled children. But due to T's fatigue levels (needed afternoon naps until nearly 5) our participation was severely limited to almost non-existant. I had hoped that, after getting through the winter, we could take a larger part. However the group has mostly moved to events which carry costs, an afternoon when the boys have swimming - and T is no longer up to doing much at all.

The ASD group was very helpful in coming to grips with W's situation. Anyone who knows me I like to be able to help those I can with what we've learnt along our journey and so that was good too. But, a bit like the prematurity forums - life comes down to tin tacks and how affected your child is. P and I used to come out being intensely grateful that W is as good as he is. But that didn't help with the areas he - and so we - needed support in. Once we started home schooling he improved - and the vast majority of the time at the meetings was taken up with school issues which were now a non-event for us.

As P and I learnt as W's issues became more and more obvious - friends don't know how to cope with a child who clearly has issues, how to cope with worn and embattled parents, parents who have to focus on their child/children and constantly fight for what they need, spend hours researching, booked up with specialist appointments, limited in their socialising ability by their child's needs.

Those friends who do not yet have children often cannot comprehend this world and those who are coming up to having children are often subconsciously afraid, afraid to see what could go wrong, afraid that somehow they could have their chances contaminated by our bad luck. Friends often drift away.

P and I can count on one hand the friends who have stayed around despite the differences, the gulf of tiredness and child obstacles in the way to being there for others - socially as well as emotionally. It is hard to be there emotionally for others when you are constantly juggling intense demands for your own children - and let's face it - if you, as the parent aren't there for them then who is going to be?

And so our 'normal' friends, with 'normal' kids are few and far between. The 'normal parenting world' is behind a curtain somewhere. I can see it in a shadowy form, I get to use aspects of it in my daily life too but it's like a hazy mirror.

On-line groups, especially international ones are good for the embattled 'special needs parent'. There's always someone who can support the person in need so it's not always up to you, you can be there when you get the moment - regardless of the hour.
Some may say that that support isn't real, can't make a difference - but trust me, when it feels like you are the only one in the world to ever face this particular challenge - just having someone say 'Yes, I've heard of this, I've dealt with this or know someone who has', to have an email in your box saying 'Yep, you are right, that really does suck' really does help, give you a lift and make you realise that yes, you can and will keep on keeping on - even if it is two steps forwards, one step back.

My on-line 'normal' parents group was a life line. Because it was mostly on-line it had all the benefits of that and the real life meet ups gave a fairly safe place where aspects of the kids were understood because they were forewarned - but the kids could also just be kids.

So where do I fit? Where do I sit least uneasily? Where will be the fewest blisters and friction burns? Because, let's face it, no one gets on all the time and as email is a very blunt medium misunderstandings, disagreements and eventually fights inevitably break out.

Because you aren't speaking face to face people say things they wouldn't otherwise dream of saying, take implications that could not have been taken if you could see facial expressions, and because they are in written form you can come back to time and time again to be re-hurt, fester, cogitate over.

On-line groups also have the benefit and drawback of being easy to join and leave.

It's surprising how you come to depend on these groups in my situation - how these internet friends become your community, your support, your net.
Just as any parent - or person for that matter - have days when they just need somewhere to say they have had enough, they just want something to go right for once, to blow off some steam - so do I. However because I don't fit anywhere completely, comfortably - and because my options are limited, these groups become more significant. Precisely because you aren't face to face you open more, share more, feel like you are friends more - a bond.

And so when the inevitable happens in an on-line community and people fight, people leave it hurts - perhaps more intensely for those in my situation because it feels like a big door has shut, there's another aspect you are cut off from, just another group which exists that you don't fit into.

Sometimes, in an on-line community you get the major event, the implosion, you get a mass exodus - and you get left with a big sense of nothing left, of grieving although it feels silly to grieve for it. But it's another place you don't fit, you can't belong, where you are too different.

But maybe this is the nature of friendship today? What is friendship and how is it changing in today's world? It can't be unaffected by modern technology - everything else is after all! How many of us have people we barely connect to as friends on Facebook? If it really came to total crunch time how many of your 'friends' would stand up and be counted with and for you? Or how many have crossed your life path for varying lengths of time and moved on again but still we cling to that shell of momentary shared history?

For many people, this ephemeral nature of 'friendship', of community is easily managed, coped with. They have other opportunities and groups available to them. Perhaps when the group does the, all too frequently experienced, implosion, they are able to pick and choose who they maintain contacts with, with whom they can meet up.

For the 'special needs parent', the one with limited options, groups, time and energy this isn't so. The loss is bigger, magnified by the fact that it's not easily replaced.

As I said at the start - everyone needs a community, a place to belong, at the very least a place with the least friction burns.

Specific needs communities have their own drawbacks, internal competitions - and often the parents are embattled enough that they can't support anyone more at particular times as they are already paddling frantically to keep their own emotional boats afloat.

Normal needs communities have the major drawback that often you are speaking another language, you are an alien from another planet, the extent of what you manage on a day to day basis leaves them feeling like they have nothing they ought to complain about - losing them THEIR community and THEIR support base which they need too. You worry that your experiences, needs for support, simple venting are actually too much, too foreign, too needy in a normal world way for their group.

I have found, in my life, that while everyone needs somewhere to belong, when you straddle areas as I do, that it is a reality that groups come and go, your involvement waxes and wanes and that there are regular intervals in your life when it is simply you and your little bubble afloat on the ocean of day to day challenges and that right now you don't have anywhere to belong, nowhere is a fit.
You have to have the resources, strengths and experiences to draw on to keep on going and do it by yourself. And sometimes you have enough challenges on your plate that the loss of an imploding group is a grief and a challenge that stretches you to the max - one that maybe makes you realise the ephemeral nature of the friendships you thought you had, or at least wonder if the current attempts at community are worth it.

So long as you have some kind of fit somewhere, and keep reaching out at times when you do have the reserves - and recognise the fact that for some of us - you will never really, truly fit.