‘Closed’ (members only) online support groups are used not just by those who have no actual support groups nearby, or whose circumstances prevent them getting out to such, but by people from all walks of life whose children have a particular disability, ‘condition’ or need in common, because of the wide base of knowledge and experience contained within these diverse, often international, groups.

They can, however, be a bit of a minefield for the unwary.

The nature of online communication, which lacks the nuances and non-verbal cues of a face-to-face conversation, such as tone of voice and body language, make misunderstandings that much more likely.

In an environment where many members may have skins worn thin by the weight of grief, worry and the negativity of others, or the struggle to come to terms with their child’s diagnosis, or to find the energy to meet the extra demands and stresses placed on them.

It is easy to post something, or to make a comment, that inadvertently upsets someone.

In most cases where this happens the issue is resolved in a mature and amicable fashion – the members are adults after all – apologies are offered, true intent and meaning are made clear.

But I have witnessed a few instances where the exchange of comments has gradually taken a slightly more… disturbing … turn.

It starts with a comment which suggests that one member has taken a perfectly well-reasoned general post, or an equally reasonable comment made in response to it, as a deeply personal attack.

I think of them as ‘Facebook Martyrs’ but there is probably an official classification for this sort of behaviour among those who study online behaviour for research purposes.

It is likely that you will respond, because at first it will appear just like any other misunderstanding that can be straightened out with a little clarification and a few conciliatory words.

But if you do, and however you do, they will probably (metaphorically) sigh that they ‘do not have time for your drama’ because they have ‘bigger things to worry about’.

They may well suggest that your time and energy would be better spent on ‘the things that matter’ (to whom?), insinuating that because, unlike you, they do have their Priorities In The Right Place, they are morally superior.

The best thing to do would be to step away from the conversation now, and turn off the notifications.

But it’s difficult not to respond when you know that if you don’t they’ll be gloating through their tears because they’ve shut you down, and swiped the moral high ground to boot by playing the victim.

At this point they may well make veiled insinuations about your personal qualities, or lack of them.

They reserve particular hatred for anyone who appears articulate and confident, because they ‘don’t come here to be spoken to like that’ (no, they come to have others agree with them and pat them on the back for doing the things the rest of us do without complaint or comment every day); they’re just a humble soul, doing the best they can to survive the terrible struggles and sacrifices that life has heaped upon them, that you couldn’t possible understand.

Suddenly you discover that this person you’ve never encountered before is an expert on your life and the reasons why you are so bitter and mean.

You will also discover that this person who did not have the time or energy for ‘your drama’ has tremendous energy for a personal fight.

Now they will start calling for back-up by tagging ‘friends’ into their comments, who will surround you, spitting out words like obnoxious’, ‘selfish’, ‘arrogant’, ‘bad mannered’, ‘rude’, ‘vicious’ (delete as applicable).

If you are a woman, you will also be ‘not a nice person’ (because, of course, all proper women are ‘nice’), or you are a bad mother (because, of course, any half-decent one would be fully consumed with her child’s needs, not messing about on Facebook).

The gaggle of martyrs will usually now run crying to the admins: ‘Please miss, a nasty person is picking on us, and making us want to leave, but they should be made to leave, because they’re terrifying all the vulnerable new members and making them leave!’

It is probably true that new members are heading for hills in droves: because, having read the martyrs’ comments, they fear the worst –

not only will their lives be an almost unendurable crock of shit, but if they inadvertently say the wrong thing, they stand to be pecked to death by a flock of vulture-hens!

I’m not sure whether the people indulging in this kind of behaviour are also bullies in real life, or even if they are aware that this kind of behaviour could constitute bullying – but it does.

It’s particularly invidious as it creeps up on you in a place where you are entitled to feel safe among friendly fellow travellers on the same road, your squad/ crew/ tribe; it can also be difficult to identify, as it is dressed up as self-defence.

But recognising and stamping out this subtle form of online abuse is something that admins need to be especially vigilant about.

There is also talk about the age of retirement being raised as life expectancy increases and people choose to work longer.

More and more females are delaying starting families until later and mobile phone and internet usage among senior citizens is continuing to increase.

What does all this say? It tells me we are never too old to learn and achieve and that age really is a matter of opinion.

Yet sadly at the other end of life so much pressure is placed on parents if their child is not meeting milestones such a crawling, walking or speaking by a certain age.

If an adult learns to drive much older no-one thinks anything of it. If a couple in their forties or fifties gets married everyone rejoices just the same.

Yet if a child is delayed in more than two areas of their development, such a social, language, gross motor skills or cognitive development they are often told they have ‘global developmental delay’.

That was the first ever diagnosis given to my baby boy when he was just 22 months old.

He had no language, no social awareness, never turned to his name, could not walk and was not playing age appropriately.

He went on to receive many more diagnosis over the years and now at 8 his diagnosis of global developmental delay is gradually being changed to significant learning difficulty.

He was unable to attend mainstream school and at 8 still has no spoken language and is still not toilet trained.

He can not stand on one leg or ride a scooter. He can not read or write or spell words. He can not dress himself or play with others.

But he HAS achieved so much.

He can now point. He can use an iPad. He can eat with a spoon and a fork. He understands more than he ever did before. He can walk and run.

He can climb in and out the bath. He can sit in a seat unaided and work simple baby toys. He can turn the pages in a book and work out which way round it goes.

He can press the right number from 1-5, he can point to basic parts of his body. He can make a choice between two items.

Does it matter when any of these skills were achieved?

He has a long way to go and he will never be on par with his peers. He will require care for the rest of his life.

I have no idea if or when he will ever speak and if he will ever master toilet training.

While these fundamental skills are things we all take for granted it is also worth asking the question…does the age we achieve things actually matter?

Put it this way…when we’re you last asked as an adult at what age you were toilet trained or when you first wrote your own name? Hardly relevant as an adult is it?

Once we master a skill we never look back whatever age we achieve. We are always learning and developing and we must never look down on anyone who achieves anything later than ourselves.

I passed my drivers test at age 19; my husband was 40 before he passed his.

We both drive daily now and I have no idea if the driver in front of me has been driving one day or one thousand days…and that is how it should be!

This week my 8 year old painted a picture. To most it was a scribble but to him it was a massive achievement.

He also noticed and wanted to feed a friend’s rabbit. This is huge progress and these are things many take for granted but parents like myself celebrate so earnestly.

While society actively encourages and rewards adults for achieving later in life we often don’t offer the same grace to children who, for whatever reason, are blooming in their own time.

Flowers that bloom late are often the prettiest and the most hardy. They bring joy and beauty well after others have died in early autumn.

My son put clothes pegs on a tea set today and pretended they were chips to eat.

I never ever thought I would see pretend play and today I did.

He is 8.

Does the age you achieve actually matter?

As long as you are achieving then keep achieving in your own time and your own way.

Let each of us bloom and shine in our own precious time.

My son is 8, he has severe learning difficulties and needs help with every aspect of daily living.

I think back to the early days of realisation that my child would be disabled – the grief, the despair, the loneliness, the anxiety, the depression.

There was so much crying. Crying every day.

Tears from me, tears from my husband, tears from grandparents – so many tears.

We felt so lost trying to get our heads around disability, special needs – this whole new world.

A world of appointments, therapy & therapists, doctors, nurses, social workers, hospitals, child development centres, specialist equipment.

The letters, endless letters. So many letters he needed his own filing system.

So many people having an opinion on my child, our parenting, his development.

Being talked at. Not being listened to.

Sleepless night from worry.

Sleepless nights from reflux.

Googling. Scaring myself witless.

Understanding, ‘the system.’ I didn’t even know there was a system.

It was exhausting. I was exhausted.

I rarely left the house, friendships suffered, family life was non-existent.

Then slowly but surely things began to get a bit better.

There was a distant light on the horizon.

I got better at navigating ‘the system’.

He got the equipment he needed to make things easier.

We discovered techniques and tactics to deal with the challenging behaviours helping us get out of the house for longer periods of time

Medications that helped with the reflux.

We learnt how to pick and choose our battles.

I formed good relationships with the people I now accepted had to be involved in my son’s care.

We had another child.

He started school. I went back to work.

Not quite the normal I’d imagined but all fairly normal.

We enjoy family days out, we go camping, we spending time at home, visiting friends and grandparents.

But I always have this little knot of anxiety that never really leaves me.

You see I read stories about adults with learning difficulties living in care.

I see mums and dads in their 60’s and 70’s struggling with their adult children with disabilities.

Bigger, heavier equipment.

Bigger, heavier children but with exactly the same needs as my 8 year old.

More difficult to dress, more difficult to manoeuvre, more difficult to care for.

I have friends whose children are transitioning in to adult services.

I try to lend a sympathetic ear, provide advice and support.

While a voice inside my head is saying, ‘Is this what we have ahead of us?’

So although I am enjoying this time, this period in our lives I do wonder is this as good as it gets?