‘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.

I believe that if we all work together and are ‘on the same page’, offering a consistent approach, it will give us the best chance of a good outcome. I must say, though, that I did not have high hopes; I was afraid that it was just a box-ticking exercise by me to prove that I had at least tried, and I entered the meeting feeling very defensive.

To my great surprise I actually left the meeting feeling very positive. I felt that I’d been not just listened to, but heard.

I felt that constructive suggestions had been made, and that, above all, everyone wanted the same thing – to work together to help Freddie.

You might ask why this should come as a surprise, especially if you are the professional; after all, isn’t that exactly what is supposed to happen? In theory, yes: but from a parent’s point of view, meetings with professionals can often feel like confrontations.

I am not the only parent who feels defensive in the face of professionals.

I was following a thread on Twitter recently in which a teacher asked: ‘Why are parents so adversarial with schools?’ I tweeted the reply: ‘because schools are adversarial with parents’.

He seemed surprised by this viewpoint and asked me to elaborate, so that he could get some idea of what might be done to reduce conflict between parents and teachers.

I said that both parties needed to remember that they should be on the same side – that of the child.

In the past I have approached professionals, looking for assistance with a problem that I have not been successful in tackling by myself, only to find that the meeting turns into a subtle blame-shifting exercise.

We’ve been through several phases of where Freddie has point-blank refused to get ready for school.

No amount or type of rewards has any effect, and physically forcing him to get out of bed, wash and dress is not a long-term option – he is only going to grow bigger; I don’t believe this is an appropriate or healthy way to deal with a child, anyway.

Since I could identify nothing at home that might be exacerbating the problem the next logical step was consider whether there might be something at school that might be at the root of it, because treating the cause has got to be better than just treating the symptoms.

So I asked a professional.

‘You could get up earlier. To give him more time.’ That was the first suggestion.

Please excuse the stony silence while I bite my tongue and try not to say: ‘Now why didn’t I think of that, and haul my sorry backside out of bed at a decent hour instead of festering in my pit until 5.50 am.

After all, it’s well known that a child’s mood and cooperativeness are vastly improved by dragging them out of bed while they are still asleep.’

Perhaps I am just spectacularly unimaginative, but I couldn’t for the life of me see what was to be achieved by giving him enough time to sit there like an adamant and very angry sack of potatoes for three hours instead of two.

It would still end with me trying to force his school uniform onto him while he fought tooth and nail to get it off again.

‘You should give him consequences. He’s old enough to understand that. Have you tried walking him to school if he misses the minibus?’

Of course, I really should try that one.

After all, the LA only gave him a place on the minibus so that I could stay in my pyjamas watching TV instead of taking my child to school.

It had nothing to do with the fact that my son had hypotonia and profoundly hypermobile ankles, and a tendency to ‘flop and drop’ when he gets tired and frustrated, and we live three miles away from the school  — that’s forty minutes walking for a healthy adult!

I could put him in the buggy, I suppose, but then which one of us is suffering the consequence? He would have a nice ride while I jogged along pushing the combined weight of him and that contraption. Yeah, that’d teach me, wouldn’t it, not to be such a rubbish mother.

Was I meant to leave that encounter with the notion that I was a really s*** parent who just needed to pull her socks up? Was it meant to be motivational?

If the above example is typical of the tone that prevails when parents meet with professionals, is it any wonder that so many parents come to meetings on the defensive?

We come expecting to be talked down to and scolded like recalcitrant children. Professionals so often fail to treat parents as equals in the discussion.

Yet we are equals, because we too, in our way, are experts – experts on our child; and the things that we know about our child form a vital piece of the picture that must be fitted together to help each child get the best outcome

Mention that you are a stay-at-home mother from Stoke-on-Trent and nobody will imagine anything good about you.

But add the information that you have a disabled child and you will be assumed into heaven, or at least promoted from ill-educated fecklessness to martyrdom – a state of shabby grace.

It might sound like an improvement, but the upgrade from stupid to sacrificing isn’t one I care for when both are equally inaccurate and damning.

I once had someone manage to incorporate both assumptions into one, single, condemnatory sentence: ‘Are you really so bovine that you can’t see how s*** your life is?’ (I should point out that this person wasn’t a complete stranger).

I gave them that stare – you know, the one Paddington Bear only wishes he could do.

Nothing I have done for any of my children, disabled or non-disabled, has been a sacrifice.

If anything had felt like a sacrifice, then I would have known I was making the wrong choice. Because that is all I have done: make a choice.

Admittedly the choice was initially presented to me by circumstance.

I had intended to return to work full-time when my maternity leave ended because … well, to be honest, just because that’s what everybody else does.

I knew that at first I’d be working for nothing, my wages would just cover the cost of childcare.

Although it seemed silly, and rather sad, for me to go to work to earn the money to pay someone else to do a job I desperately wanted to do myself, I never questioned it.

Returning to work after having a baby is what is expected of a woman these days.

Then, one day, a few weeks after my maternity leave started, I got a phone call saying that my employer had sold the business. I was effectively redundant.

I’d had several miscarriages before my longed-for baby arrived.

My husband suggested that it might be good for both myself and our son if I were to take a year out before looking for work, and just concentrate on being a mum: if we tightened our belts we could manage on his wage.

Later we decided that it would make sense to have our second child while I was still at home.

I did make a tentative foray back into the world of work when the children started school, but my eldest, who had been such a contented child until he went to pre-school, had real trouble settling into classroom life.

There were plenty ready to make assumptions then, too: to point the finger at me, for not sending him to nursery when he was a baby.

But I knew that there was something more fundamental at the root of it; after all, my daughter did not have the same problems.

At seven he was diagnosed with an Autism Spectrum Disorder.

I know there are many mothers out there in just this position who do work, but for us it just didn’t add up.

There were times when he just could not cope in school, or when school could not cope with him, and I would get a phone call asking me to pick him up even before the lunchtime bell had rung.

Not best practice, granted, strictly not even legal if I had objected, but School and I both agreed that during these times he needed to be in a predictable, low-stimulus environment where he felt safe, with a person who understood him and his difficulties very well, and was supportive of his needs.

In short he needed to be at home, with me.

I could see him through a meltdown, or help him to calm himself better than anyone, and if he had to be off for a couple of days I’d make sure we used the time constructively.

Even when he managed a full day at school, by the end of it he’d have steam coming out of his ears from the effort of holding himself together all day.

The last thing he needed was to have to then go to a childminder or after-school club, and cope with other children in an environment less orderly than a classroom.

Help for autistic children who do not also have learning difficulties was not then, and still is not, readily accessible.

I was the best resource available (and the cheapest): and the only one that all parties would trust implicitly.

We might have been slightly better off financially if I had gone back to work, but in no other way would our family well-being have benefitted.

I know what you’re assuming – something along the lines of: ‘Oh, that’s all very well if you’re a nice middle-class mummy whose husband has a well-paid job.’ But that isn’t how it was with us.

Our one income was relatively modest, and still is. But we didn’t have to make sacrifices, we just had to make choices about what was most important to us as a family.

I don’t think there can be many families in the land who don’t have to prioritise how they spend their money; we just had to be a little more rigorous than most.

We never had to do without the essentials; if we’d ever faced a choice between paying the mortgage and paying the gas bill, it would have been time to rethink our arrangements. But it never came to that.

In fact, in the end we realised that we weren’t substantially worse off than most of our two-income neighbours – possibly because we weren’t paying out a big chunk on childcare, or after-school clubs and holiday play-schemes.

And we only had to run one car. I don’t need a work wardrobe either.

We also never had to juggle whose turn it was to take leave if one of the children was ill, or who would take which week in the school holidays to try to reduce costs a bit.

We got to spend a lot of time with each other, and with the children. Freddie coming along when he did was a surprise for a whole host of reasons.

Because he has Down’s Syndrome we were inundated in his early years with appointments for various check-ups and therapies on a weekly basis.

I’ve never had a problem fitting these in around my work schedule, though (because I don’t have one), nor the hassle of trying to find affordable, inclusive childcare that is both willing and able to meet his additional needs.

So please do not assume that because I have chosen to be a stay-at-home mum that my life has been sacrificed, that it is less than.

A child’s first school is its mother’s lap, and you would not assume that a Nursery Nurse or Early Years Practitioner was bored with her job, or stupid, or that she had wasted her life.

was Nursery Nurse to my own children, I did everything with them that any decent childcare provider would do, and in the process I had the inestimable privilege of witnessing, and being heavily involved in, every moment in the development of these fascinating little beings.

I realise that the choices I have made are not possible for every family. Many mums have to return to work out of cold, hard, financial necessity.

Others are engaged in professions that require them to undertake Continuous Professional Development in order to keep practising in their chosen field.

For them, being a stay-at-home mum is not an option. But for us, my choice to stay at home has been our saving grace.

Although we have less disposable income than other families, we also have less stress, and more time.

This alone may well have saved us from imploding under pressure.

As far as I am concerned my family are my life; therefore, nothing I do to preserve the wellbeing of the family is a sacrifice.

How I laughed. I probably laughed a little too loud and a little too long.

You see, one of the things that ‘Special Needs’ parents (for want of a better phrase) grieve over, in addition to the ‘loss’ of the child they were expecting to have, is the ‘loss’ of the normal, perhaps idyllic even, family life that they were expecting to have.

Even in those days, before Freddie was born with his (apparently) family-destroying diagnosis of Down’s Syndrome, that (apparently) promised lay waste to any hopes of normality that we could ever harbour (heads up, folks – it doesn’t), we weren’t quite a ‘normal’ family anyway.

From the outside we must have looked like a regular, Ladybird book, Topsy and Tim, ideal family (only without the robotic, slightly glazed-over, patience of the mother. I’m waiting for the series where she finally flips her lid and starts setting fire to things).

A mum and a dad, only ever married to each other; two children, a boy and a girl; a three-bed semi with a family saloon on the drive; we even had a cat just like Postman Pat’s Jess.

I’m sure when we first moved in we must have looked to the neighbours like any other, ‘ordinary’, young couple.

They did not see the mother of one of us, who came to help us move in, become extremely agitated when I placed tins of cat food on the ‘wrong’ shelf in my cupboard.

If they had they would not have been alone in not understanding what the problem was. I didn’t either. Not then.

They also wouldn’t have been aware that sometimes, on lovely sunny days, my husband could not comfortably go out into the back garden, because he could hear the infinitesimally faint beeping of their car immobilisers, parked in the street out front, and the noise, inaudible to me, was almost unbearable to him.

After we acquired children, I, Mummy, stayed at home while Daddy went out to work. I didn’t wear a frilly apron, but I did bake things.

Anybody peeking in through the kitchen window might have concluded from the fruit bowl that our favourite was lemon sponge, or that I enjoyed a refined cup of lemon tea in the afternoons.

They would never have guessed that the reason there were so many lemons in the fruit bowl was because some members of my family like to peel and eat them like oranges.

That caused a few ‘issues’ at the school whose fresh-fruit-only snack policy couldn’t encompass the idea that a child who chose to eat lemons and redcurrants could find his senses so offended by more socially acceptable fruits like bananas and apples that he would vomit if he ate any of them.

It also didn’t encompass the fact that it took so much energy just for him to process the information he received during the first hour or so of the day, never mind to keep functioning in a ‘normal’ way like his peers, that by morning break he’s be shaking with hunger, despite having had a good breakfast, and a bit of fruit just wasn’t going to replenish him. He needed carbs.

It didn’t have to be a sugary snack, if they’d just let me provide him with unsweetened Scottish oatcakes he would’ve been fine with that.

But no, it had to be fruit; they couldn’t change the rules just for us, even though everyone at the school was very well aware that we were not ‘normal’.

No one at my daughter’s school was aware of this, though, as we had sent her to a different one, so that she would have a chance to be judged on her own merits, to be treated as a typical kid from a typical family, instead of being automatically tarred with an unfair brush.

This seemed important when she started school. But then an accidental breach of confidentiality during a meeting at my son’s school allowed another mother to become party to my son’s diagnosis, because her son had the same.

This lead to me being invited to a Parent Partnership coffee morning, where I discovered that there were actually a few of us, apparently, “chocolate-box”, families, that didn’t quite fall onto the ‘normal’ spectrum.

One or two were faces that I knew, but I’d had no idea they were facing similar challenges to us.

Then the husband of one of the Alpha Mummies, a woman who treated me with a particularly nauseating blend of pity and disdain, developed a case of blabbermouth, and let slip a few secrets during some locker-room banter that my husband overheard, and, uncharacteristically, shared with me (he couldn’t stick her attitude, either).

Neither of us ever breathed a word to anyone else, but we basked in the secret satisfaction of knowing that, in any person, and any aspect of life, the veneer of perceived ‘normality’ may only be skin-deep.

By the time Freddie came along I was quite at peace with the idea that family was ‘different’, an adjustment perhaps made easier by the fact that neither my husband, nor myself, come from the perfect Mum + Dad + 2.4 kids model of nuclear perfection.

In my husband’s family there were three kids and one adult, and not another living soul anywhere nearby who was related to them.

The only adult worked two jobs to make ends meet, so often the younger children were looked after by the eldest.

In my family, however, there was just one child, but three adults, because my Gran lived with us.

A childless aunt and uncle lived across the road, and I spent a lot of time in their house, and sometimes went away with them for the weekend.

Even with all this handy, free childcare, sometimes my mother would be so overcome by frustration that she’d try to ignite the doormat, or something.

I’d never heard the word ‘divorce’ until 1977 when my parents parted. Now divorce and ‘blended families’ are common.

Eventually my Gran developed dementia and was cared for by my mother.

In the adjoining house there lived a lady even older than my Gran; but in her case she was the carer: for her adult daughter who had schizophrenia.

In the house on the other side lived a man, with two women and several children whose relationship to him we could never discern. They had an extravagant collection of cats.

Prior to that the house had been occupied by a middle-aged couple, who kept two dogs and a goat (bear in mind this was a town house in the middle of the city).

The more I think about it, the more I realise how few of the families around me have conformed to what my daughter’s little classmate, and many other people, would consider ‘normal’.

All around us are (and always have been) families of widely differing shape and circumstance.

There are grandparents who have taken over the care of their grandchildren. There are children who take care of their parents.

There are families with no children, and there are people who are separated from their blood relatives by some unbridgeable gulf, who make family from the friends they have around them.

I don’t think it is only ‘Special Needs’ families (that phrase again) who grieve over the failure to achieve this iconic state.

However, as for me, I refuse to believe I have been robbed of, “normal”, family life, because we are just fine.

People have said to me since, ‘She shouldn’t have done that, it wasn’t fair to you’, but I disagree.

What happened taught me something valuable; and I do not think that the, ‘act’, was deliberate in any way, and it cost the other person involved a measure of personal pain.

No, it was a random act of providence that brought us together.

It happened in the small side-room on the maternity ward where Freddie and I were taken soon after he was born, on that first, emotional and bewildering night.

We already knew the doctor’s were sure he had Down’s syndrome, we were sure ourselves, and the karyotype would be just a formality as far as any of us were concerned.

It was the middle of the night.

I was awake, Freddie was dozing in the little fish-tank crib next to my bed.

A midwife came in to do my observations: routine but necessary for all new mums, especially for one who, like me, has to be on two kinds of blood thinning medication throughout pregnancy – the hours immediately post-birth bring a real risk of potentially catastrophic bleeding.

She checked my blood pressure, pulse, and temperature, asked me how I was.

Then she went to the foot of the tank and looked at Freddie. She gazed at him in silence for a long time.

There was nothing offensive in the way she did this; at no time did I get the sense that she was gawping at him as a medical curiosity.

She almost seemed to be miles away, lost in a day-dream. Then, slowly, fat tears welled up in her eyes and spilled over.

‘It’s amazing that you got to meet your little boy,’ she said.

From her face I could see that she was struggling against her tears and losing the fight.

‘I had a little boy with Down’s,’ she went on, ‘but he didn’t make it, he was stillborn.’

I don’t recall what I said back to her, probably muttered, ‘I’m so sorry’, or something like that.

‘Amazing,’ she repeated.

In that moment, I felt like it was amazing. I still do.

Her unstoppable grief showed me what the depth of my love for Freddie would be – exactly the same as the love I have for my other children.

I hope to God nobody has ever said to her ‘It was for the best, he had Down’s,’ because, quite clearly, it was NOT for the best as far as she was concerned.

So now, whenever we’re having a bad day, I mentally put myself back in that room with her, look at the situation through her eyes, and see how very lucky I am to have been given the chance not just to meet my little boy, but to get to know him.

To watch him grow, and to be able to give him the love that every mother holds in her heart for her child, regardless of whether she is able to hold him in her arms.

Rapidly approaching forty, Kerry thinks she has nothing new to look forward to in life; all that lies ahead is a depressing decline into old age beside a husband who’s stopped noticing her. But a birthday surprise leads to consequences that will change her life forever.’

——

For Storytelling Week I decided to look at my life as though it were a book blurb. Is it a story I would want to read?

My journey into ‘Special Needs’ motherhood certainly has many of the elements essential to an engaging novel.

If it were to write it as one I would call it The Best Christmas Ever.

It has a main character who, at the start of the story is on the cusp of a crisis – she is about to turn forty and is depressed about crossing the threshold into middle age.

But cross it she must, time will continue to tick by, she will get older, whether she likes it or not.

How will she deal with this?

It has dramatic tension: just when the reader thinks they have a handle on the character and her problem, the situation changes: what she took for the first signs of menopause turns out to be an unplanned pregnancy – an unexpected turn of events that places her under stress and both tests and reveals her…character.

All of which creates the next element:

Conflict – both internally (in the character’s emotions or psyche): she feels both dismayed at being caught out at an age when she ought to know better, and relieved at the ‘reprieve’, is worried about the reaction from her spouse, children, parents and friends, concerned about how a third child will change things, and even how they will fit an additional child into the house, not to mention the prospect of being the oldest mum at the school gate.

And externally: between herself and her partner, who had rather different ideas of what life in their forties would look like, and also with her parents, who are concerned about her age.

As the story moves along, of course, the conflicts change; as one is resolved another appears.

No sooner do she and her partner accept the idea of having another child and even begin to look forward to it, than tests reveal a higher than usual chance of the baby having Down’s Syndrome.

Her partner, parents, and doctor are keen for her to have an amniocentesis, but, with a history of recurrent miscarriage, she really doesn’t want to risk it, especially not since she has a growing feeling that she would not act on the information; and if the test was to prove positive she would come under pressure to do just that.

How will the decisions she makes affect other members of her family?

Like any well-paced novel, though, it has a varying rhythm: the tension slackens off just after the mid-point of the story, after no ‘soft’ markers for Down’s are detected at the twenty week scan.

The main character and her husband now set about preparing themselves for what promises to be the best Christmas ever, with the baby due in the middle of the festivities.

It picks up again when we reach November.

With the baby not moving so much, and mum’s body showing signs of going into premature labour, the consultant decides that the birth must be induced straight away, but if there is no neonatal bed at the local hospital, that will mean transfer to Manchester, or possibly even London.

You see, it even has suspense.

All good stories should have a beginning, middle, and an end.

They don’t have to end with ‘happily ever after’, though, and indeed, this story does not.

That is not because the baby, my baby, was diagnosed with Down’s Syndrome, though; rather it is because it ends with ‘to be continued’.

Because having a baby with Down’s Syndrome is not the end of the world.

Nor is it the end of your story – it is simply the start of a new one, a sequel.

The sequel to The Best Christmas Ever will be called A Degree of Difficulty: A ‘Special Needs Mum at University.

In the first book our character went on a journey of growth and development: she went from thinking that she wasn’t much good for anything to believing she was, perhaps, stronger, smarter and more positive than anyone had given her credit for.

Now it’s time for her to put that to the test.

How will she juggle domestic life, disability and a dissertation?

But that’s another story.

Once he went back to school we had less chance to practice our new skills, but we were still pleased with his progress.

Then, three days before term was due to end, Freddie’s teacher rang me to say that there had been an outbreak of Slapcheek infection among the children, knowing that our paediatrician had advised that this could be potentially troublesome for Freddie because of his medical history.

We decided between us that it would be best if he remained off school for the last days of term.

I hadn’t planned for this eventuality, so still had some preparations to complete and errands to run.

Never mind, I thought, I can take him with me, it’ll be nice to have some company.

First stop was the supermarket. Freddie swore like a trooper up and down every single aisle.

What’s more, he seemed to take great delight in doing so, waiting until somebody passed close by before blurting out a profanity, then looking up at me smirking mischievously.

Clearly he was looking for a reaction, so I decided not to give him one, but to ignore the behaviour and brazen the whole thing out.

I didn’t notice too many dirty looks, so perhaps my fellow shoppers had decided the same, or, more likely, they weren’t taking any notice of us anyway.

It did occur to me that perhaps Freddie was aware that he was missing out on the Christmas party, and the fun and treats the other children would be enjoying at school, or, worse still, that he was sickening for something.

I decided to gloss over his language in the supermarket and take him for a little treat. We went into a nice cafe and ordered drinks and biscuits.

On this occasion I’d taken the buggy, as we had a lot of stuff to carry, and a long way to walk, but, as I had over the summer, I sat him on a ‘proper’ chair at the table.

He made a grab for his drink and upended it all over the place.

I didn’t dare leave him to fetch napkins, and while I was rooting around in my bag for tissues, he threw his biscuit at the next table, then made a run for it.

I managed to grab him, but the buggy, laden with shopping, tipped over.

The people at the next table, recipients of Freddie’s flying biscuit, were very understanding.

They helped me right the buggy, and held it steady while I put a struggling Freddie into it; they brought napkins and helped me to mop up.

Whoever they were, I salute them now, and commend their behaviour to anyone who comes across a mum in that kind of situation.

Then Freddie announced that he needed the toilet. Abandoning what was left of the drinks, I wheeled him over to the accessible stall, but it was occupied.

He was getting more insistent, so, rather than chance waiting, I took him into the regular cubicle.

It was nearly impossible to manoeuvre the buggy in there, which made getting him on and off the toilet very difficult. He was lashing out, scratching my face the whole time.

He seemed totally overwrought, but I had no idea what had triggered it.

Fortunately, no illness materialised over the Christmas break. Ever since then, though, his behaviour has often been difficult when we are out and about.

I noticed that he would flop and drop, particularly in big, busy stores, plonk himself down in the middle of the floor and refuse to get up. In the kind of shop where there is a greeter at the door, he would say ‘shut up, lady’ (or man), or swear as he went past.

He’s always indulged in quite a lot of attention-seeking behaviour, but now he would really ramp it up, or just be generally difficult and obnoxious.

Very rarely could we see any obvious trigger.

His teachers reported no problems at school. He was progressing well there, with no new behaviour issues. He was still capable of being a thoroughly charming little man at times.

Then, one day this summer I spotted a link someone had posted on Facebook to an article that concerned itself with addressing challenging behaviour in children with Down’s Syndrome.

It was an academic article so much of it went over my head. But one or two things struck a chord with me.

Children with Down’s Syndrome have a tendency to engage in certain kinds of challenging behaviour: this challenging behaviour serves two functions, either (1) to obtain something that they want, an item or an activity, or (2) to escape or avoid a situation or activity that they don’t want.

Behaviours associated with anxiety (and also depression and withdrawal) tend to increase with age.

I began to ask myself whether Freddie is becoming anxious in certain situations.

Is his behaviour a way of demonstrating that anxiety, especially since at this stage in life he would struggle to put his emotions into words.

Was it also, perhaps, a way of trying to escape a place or situation that causes him distress?

But what could be making him so anxious about a trip to the shops or a cafe?

To be honest, I didn’t have to look very far to find the answer to this: anxiety runs in our family like a certain shape of nose might run in others (no pun intended).

Sensory sensitivity is not uncommon in our immediate family, either.

Although Freddie has never shown any pronounced sensory difficulties, perhaps he has slight ones that are magnified in certain environments, busy or unfamiliar ones, where he is bombarded with lots and lots of stimuli all at once?

Maybe he simply feels overwhelmed?

I haven’t come to any firm conclusions yet, but I’m observing him closely for clues when we’re out and about.

I have noticed, for instance, that he seems better in his buggy. Does he feel sheltered in there, a bit safer?: I will have to make a point of noticing whether there is any difference in his demeanour according to whether or not the sun canopy is in place.

The last time we went to a restaurant, Freddie was well-behaved until the food came. Then he started spitting and trying to escape from the table.

I took him outside to calm down, but each time he settled and I tried to take him back inside, he swore as soon as we got to the door.

With hindsight, I played this all wrong. Daddy had ordered macaroni cheese for Freddie, because he likes pasta. The spitting and the escape attempts started after he tasted the food.

Freddie’s always been ambivalent about cheese. Perhaps the sauce was just too cheesy. All the food was pretty rank, to be honest.

Perhaps the spitting was a way both to get the food out of his mouth and to get out of eating it; perhaps that’s why he ran away, and I ended up chasing him behind the bar?

Maybe the reason he swore every time I tried to take him back inside was because he was afraid I was going to make him eat that bloody awful food?

He has certainly given me a few clues to be going on with.

I have the beginnings of a plan of action in mind, the rest will be formulated ‘on the hoof’ as the situation evolves.

This Christmas I am feeling optimistic that, with time and perseverance, I can help him to manage these issues.

The first simply questions whether or not your child’s diagnosis of Down’s Syndrome came as an after-birth shock, or whether you were prepared in advance.

It acknowledges that prenatal screening is a choice, but with, perhaps, a hint of prurient curiosity as to whether there really is anyone who would choose to continue if they knew in advance.

The second also acknowledges choice, but wonders whether you chose not to test, or were let down by some fault in the screening process. It suggests a hierarchy of empathy: those who fell through the holes in the medical science safety net are deserving of it, but not those who declined screening.

In short, it wants to know whether you are responsible for your own situation.

The third denies choice, as it assumes that, because test exists and is (widely believed to be) now infallible, that there is only one, reasonable, responsible course of action – termination.

It seeks to lay blame.

Society expects that people will test and terminate, any who refuse to do either of these things are seen as unreasonable and irresponsible, selfish, even.

It has no empathy for anyone who has a child with Down’s Syndrome because it asserts that they made the wrong choice.

I don’t have an issue with prenatal screening itself: that is not the problem.

It is the societal attitudes and pressures surrounding it that concern me.

The prevailing narrative is that having a child with Down’s Syndrome is the worst thing that could possibly happen, and that the purpose of prenatal screening is to eradicate the problem.

Some countries have declared that they will be ‘Down’s Free’ in the near future.

Since Down’s Syndrome is not hereditary*, but a naturally occurring chromosomal arrangement that appears in all races, and has done so throughout history, the only way for any country to be ‘Down’s Free’ is for it to make prenatal screening and termination ‘compulsory’, not necessarily by law, but by societal expectation and pressure. Peer pressure, if you like.

This is facilitated when the status quo perpetuates outdated, negative stereotypes of the condition and those who have it, and by suggesting that they are a drain upon society but make no contribution to it.

Suddenly ‘test and terminate’ becomes the rational, the responsible, the only, thing to do, as it appears to benefit not only the individual family but all of society.

Lives are measured against each other in financial terms, by their potential future cost to the state in terms of health and social care.

Those found to be potentially more expensive than the average are then compared again, not to another human this time, but against the cost of a prenatal screening programme.

Lives are commoditised; it is their financial profile alone that decides whether they are considered worthy of keeping, or should be disposed of.

None of this takes account of differences beyond the number of chromosomes.

Not all people with Down’s Syndrome experience ill-health, or require social care.

When they do, then the slightly lower life expectancy of those with Down’s off-sets that. In any case, their families pay tax and national insurance, indeed, some adults with Down’s themselves work, and, presumably, pay tax and NI.

If we’re talking about cost-to-society-versus-contribution-made, then perhaps we should start screening foetuses for genetic predisposition to criminal behaviour – the cost of their potential incarceration must be huge.

But that is neither possible nor ethical, nor even desirable: because it’s eugenics.

As I stated above, I am not against screening per se.

But it seems to me that a potential benefit of prenatal screening has been largely overlooked.

As well as offering safe, early detection for those women who would choose to terminate, it could, and should, also be marketed and used to enable practitioners to offer extra-vigilant, possibly even tailored, antenatal care to those mothers who choose to continue with the pregnancy. But this isn’t happening.

Perhaps it is deemed too expensive.

The reality of life with Down’s Syndrome in the twenty-first century is that a significant number (you might say even the majority) of families with a member who has Down’s report that they enjoy good quality of life.

Ninety-nine percent of adults with Down’s class themselves as content with their lives, and ninety-seven percent of siblings report being proud of their brother or sister with Down’s.

Nobody is denying that we face greater challenges, sometimes considerable ones, with seventy-nine per cent of parents reporting that they have a MORE positive outlook since parenting a child with Down’s, there is clearly something deeply life-affirming going on in these family relationships.

Although there are many things my son cannot do that other eight-year-olds can, he gives as much as he receives, and has made me a bolder and happier person.

Oh, and many of the proud siblings I mentioned go into the caring professions – and that, my friend, is surely a tangible benefit to society.

In her documentary, ‘A World Without Down’s Syndrome’, actress and writer Sally Phillips said ‘… if we have a society that is unable to care for people, the problem is not the person’.

But society, it seems, does not like to be told that it is wrong.

*except for a very rare form, Translocation.

When I expressed reluctance to submit to invasive testing, she mistakenly assumed that I was blindly placing my faith in the one-in-twelve chance that he didn’t have it.

She was keen to stress that I must find out for certain, because if I went ahead and it turned out that he did have it, then my life would be ruined, devastated; it would never be the same again.

Well, she was right, my life did change:

I started to get a lot of attention in the street; random people would come up to me, in one case a lady ran out of a shop after me.

Surprisingly, given what I had been led to expect, they weren’t rude, pitying or hostile.

They just wanted to talk to me about Freddie, they would admire him, talk to him, then tell me all about someone they knew, usually a family member, who had Down’s Syndrome.

These conversations were always positive and joyful.

One very elderly man’s eyes swam with tears as he stroked Freddie’s cheek and talked about, ‘our Alan’.

They were not tears for a hard and miserable life, they were tears for a beloved brother, now passed away, and much missed.

In the early days there were lots of appointments and therapies.

The combined SALT and physio session at the local Child Development Centre was like a mother-and-toddler group, but without the bitchy mum cliques that I had always found so off-putting.

Competitive mothering was replaced by mutual support and empathy.

It taught me a lot about how life should be, as opposed to how it often is these days.

Freddie attended two sessions a week at a, ‘nursery’, for children with special needs and disabilities, to give him a bit of a developmental, ‘leg-up’.

The staff, though, didn’t just work with the children for a couple of hours; it was their policy to work with and support the whole family.

I loved the place so much that I still wasn’t ready to leave when Freddie did.

So I volunteered to help in the playroom while he was at school; later, I became a Trustee (basically, she says, polishing fingernails on jumper, a company director).

The change from volunteer to Trustee came about because of another change, which meant I wasn’t available in the day anymore.

Freddie had presented me with many challenges; I had no choice other than to simply get on with it.

Much of the time it was my mental attitude that was challenged, and slowly I discovered that I was a lot stronger and smarter than anyone had given me credit for.

Over a few short years slowly and subtly metamorphosed from, ‘I can’t’, to, ‘I can’.

Others still doubt me sometimes; the difference is I no longer doubt myself.

Once Freddie was settled at school I enrolled on a university degree course (thirty years after leaving formal education at the age of 16).

I chose Creative Writing – I’ve always been a hobby writer, and made up stories in my head before I could use a pencil – because I felt instinctively that this was something I could do, and be happy doing.

It also occurred to me that if I could get some sort of formal credentials that demonstrated that I was a committed and capable writer, I might be able to work from home as a freelancer.

That way I could earn a bit of money, but always be here when Freddie needed me, too.

I graduated with a First, was awarded the prize for Outstanding Acheivement, and am now beginning to get work published: all whilst living a life that was supposedly so bleak and difficult that it was the very antithesis of personal growth and joy.

Being at university got me onto social media, a thing I’d previously resisted.

Initially I used it just to keep up with things going on in my various classes – each one had its own Facebook group – but then I started making contact with old friends.

There’s no support group for parents near to where I live, but I found groups online, and was able to build a supportive community around myself.

I started blogging, and now I’m sniffing around on the fringes of campaigning.

Neither myself nor Daddy enjoy being told what we can and can’t do, so another upshot of the often-asserted assumption that we cannot enjoy good quality of life is that we stubbornly decided we were jolly well going to!

We’d never been abroad together, as a couple: in the past we felt we couldn’t justify the expense of a week or two in the sun when there was retirement and the inevitable ‘rainy day’ to be saved for.

We suddenly realised that this mythical rainy day does not necessarily come as one huge, catastrophic storm, but often as occasional inconvenient showers, with the odd squall.

We were getting soaked in the drizzle whilst saving up to build an ark for a flood that might never come; it wouldn’t kill us to take a little of our ark fund and buy wellies and umbrellas, if the day of reckoning ever came the boat would just have fewer cushions, that’s all.

So, we’ve started taking foreign holidays.

It takes a bit more organisation and forethought, that’s true, but it’s not only do-able, it’s enjoyable. Freddie loves it. Spurred on by the need to also keep one eye on the future, though, we’ve done something else that we always wanted to do, but talked ourselves out of through lack of confidence.

We bought a property to rent out.

We’re people of modest means, we had to scrape and borrow to buy a wreck of a place, and Daddy renovated it himself evenings and weekends.

The rent paid by the tenants covers the loan, and it will be something for our children to fall back on when we’re gone.

We plan to do it again as soon as we can; we aim to get at least one house for each of our children.

The doctor was right: having Freddie DID change everything.

Having Freddie has challenged everything about the way I live and the way I think.

Having Freddie has woken me up, like the Prince woke Sleeping Beauty. When I chose to have Freddie, I really did choose LIFE.