I am not a mother who usually dreads the looming prospect of the long summer holidays. I have been fortunate enough to have been able to stay at home with my children, earning a little money by doing bits of freelance writing, so I’ve not had to worry about arranging and paying for childcare. I’ve also never found the company, chatter, and incessant questions of my children tiresome (I do, however, find many adults extremely tiresome).

This year, though, I feel very differently.

Normally I look forward to the long summer holidays as a time of relaxation and fun, a break from the up-at-six o’clock, to-and-fro school run routine.

This summer has a constricted, hemmed-in, breathless feel about it. I can feel my waistline expanding and my arteries hardening, and my brain becoming stiffer and foggier with every day that passes. Each and every day brings yet another battle to get Freddie to engage in any kind of meaningful or constructive activity at all, never mind actually do some kind of formal learning. I have to supervise him ever more closely as his behaviour get more mischievous and more provocative.

By the time I’ve done this and made sure that we have just enough clean clothes to wear and the house doesn’t become a health hazard, there’s another meal that needs cooking and more dishes to wash. With everyone working or studying at home, the amount of meals and snacks that I need to cater for has trebled. Since March I have not been able to get out for some exercise, or even to run errands. I have not been able to write, or even to think about writing. I feel old, exhausted and utterly stultified. I don’t feel like me.

Normally I look forward to the long summer holidays as a time of relaxation and fun, a break from the up-at-six o’clock, to-and-fro school run routine. This year we are simply doing whatever we can to make the time more bearable.

In a normal summer, while Daddy is at work Freddie and I might get out into the garden, play basketball, have lunch on a folding table under the conker tree, but since an recent incident in which I had to take my eye off him for a second and he clambered up a sturdy shrub to get over the fence into next door’s front garden, which has no gates and leads straight out onto the busy main road, I daren’t take him out there unless there are two of us with him.

As a safer alternative, we’ve spruced up the little enclosed yard behind the kitchen that we previously only used for hanging out washing. We’ve painted up an old algae-covered garden seat, added container plants, wind spinners and fairy lights, and hung mini gardening tools on the walls.

Freddie loves a beach, so when Daddy has his week off, we drive to the coast.

If finances permit, we might even go further afield and stay over for a couple of days. But we won’t be going to any beaches this year. Instead, the beach will come to us – Daddy has built a small sandpit in our pimped-up yard. It has a lid to keep cats and other creatures out, so it doubles as a handy wine table once Freddie is tucked up in bed. His room overlooks the yard so we just leave a top window open and we can hear him and be upstairs in a trice if he needs us.

The summer holidays would usually be a time for extra visits to see grandparents. Grandad, who has a form of dementia, really looks forward to Freddie (and I) visiting every Saturday. Lockdown has been difficult to explain to both of them.

We were hoping we would at least be able to go and sit with them in their garden this summer when the weather was fine, but, sadly, Grandad was taken ill two weeks ago, and the hospital decided that he would have to go into a nursing home for assessment before he could come home. We cannot visit him there at the moment, and Freddie will not be able to visit at all as he is a child. When Mum and I can eventually go, there will be a Perspex screen between us, and I don’t know how any of us will bear this.

The usual scramble to find items of school clothing in Freddie’s size has already been done online, as he needed a complete new uniform for High school, so this year I am going to get the Christmas shopping out of the way, right now, in case my husband loses his job a few months down the line in this disastrous economic climate.

And I am trying not to look forward to September, in case schools cannot fully reopen.

The Stripey Socks Crisis Homeschool has an Ofsted rating of Absolutely Abysmal. We have one pupil, one unqualified member of staff and hardly any appropriate equipment or resources.

We have gone from sitting down for a period of formal learning on the key subjects of English, Maths and Science, through telling ourselves that it might be ‘more beneficial’ (i.e. easier and less stressful) to focus on practising functional skills for living instead, down to simply keeping Freddie busy doing any old thing so that he will sleep at night. Basically, we’ve descended to the level of my own education at a 1980s Comprehensive School, which made little pretence of teaching but simply kept us kids off the streets and out of mischief for the day.

There seems to be a very clear demarcation in Freddie’s mind between home and school. School is where we sit down and do learning and school stuff and home is where the pressure is off, we relax and bumble about doing nothing very much. We’ve tried to explain to him why he cannot go to school at the moment, using ‘fun’ ways to get the information across, like Dr. Ranj’s ‘Get Well Soon’ programme.

Some of it has clicked with him, especially the bit about washing hands. Unfortunately, he has turned this into yet another power struggle, resisting hand washing, and touching everything in sight if we go out and then licking his hands. Lately he has become an angry, challenging and thoroughly provocative child. As the weeks have gone by each day has become more of a battle to get him to get him to engage in any kind of meaningful activity at all.

I have tried taking the learning to him, sitting on his bed with books and my laptop balanced on a chair, but then it becomes a physical battle to stop him from kicking the chair away and tipping my computer onto the floor.

Just How DO you get a child like Freddie, with learning difficulties and a very short attention span, motivated to work and focussed on the task in hand? How do you differentiate, break things down, so that he can ‘get it’? I simply don’t have the knowledge to be able to manage this effectively at home.

As a result of this period of enforced ‘home learning’ I have developed a very deep respect for the incredible skills and dedication that today’s teachers bring to the job, especially those in Special Education Schools.

Now before you start trash-talking Special Schools or trying to guilt-trip or undermine me for choosing to send Freddie to one, don’t waste your breath. For some children, a Special School is the only way they can get a truly accessible and meaningful education – one where they are able to focus on learning rather than just on trying to cope in the environment.

One thing the lockdown has made me realise is just how lost Freddie would have been in a mainstream school, where the teachers do not have the specialised training, experience and expertise that the teachers at his current school have. It has also made me more aware of the level of challenges that Freddie faces, not only compared to his typically-developing peers, but also compared to many of his chums in Special School. It has confirmed to me, if I needed any confirmation, that I did the right thing in sending him there.

Towards the end of the summer term, several of Freddie’s friends drew pictures and wrote messages to say that they would miss him, which were sent home with his school report, or arrived via social media from their parents. With the best will in the world, Freddie would not be able to reciprocate in kind – hypotonia makes writing and drawing legibly difficult and tiring, meaning he is reluctant to pick up a pencil at the best of times.

Also, his expressive language skills do not match his receptive language skills – he can understand far more than he is able to express. He has thoughts, ideas and feelings just like everyone else, but finds it difficult to frame them as words. There is so much that he cannot tell me, and this was brought home to me forcibly on the last day of term.

Freddie’s school arranged a Drive-thru Art Gallery to give those children who had not been in school a chance to mark the end of the school year. The teachers created displays of the pupils’ artwork accompanied by photos of them and lined them up along the driveway that sweeps past the front of the school. Families were invited to drive slowly through in a one-way direction to view the art from the shelter of their cars, and wave and call out goodbye to the teachers lined up alongside.

We spotted a photo of Freddie’s best friend, a girl he’s known since nursery. He looked at it and said, so plaintively, ‘I miss you.’ It was the first time he had been able to express his feelings about lockdown and the effect it had had on his life. No wonder he has been acting up. We were both crying as we drove away.

The end of the summer term was always going to be emotional.

Freddie is now in Year 6, and this was his last year at his current school, where he has been a pupil since he was three-and-a-half. Since he started, this school has been our only source of support, and being without them for so long has brought home to me just what an unfailing ally they have been for us as a family.

The teachers were strangers when I first took Freddie to the school, and entrusting my precious, vulnerable, misunderstood and discriminated against little boy to strangers was very scary at first, but by the time we parted, eight years later, we did so as fellow members of a very special school family, and driving through those gates for the last time felt like leaving home, and safety, behind.

The prospect of starting all over again at a new school was always a scary thing, too; but I knew his current school would hold our hands all the way through the process. Then Coronavirus came along and barged in between us and made everything uncertain and even more scary.

Even before Coronavirus came along, I suppose we had been looking forward to a ‘new normal’ this year, with Freddie’s impending transition to High school.

We knew that this was likely to be an uncertain, and probably difficult, time – as Freddie struggles with change of any kind – but we could never have anticipated just how difficult and uncertain it would turn out to be.

At his Annual Review in the spring term of Year 5 a keyworker from the LA was present. She suggested, gravely, that it was time I started to think seriously about Freddie’s eventual move up to High School: look at what options were available, maybe arrange to visit likely schools or find out if they had any Open days coming up. She was very surprised when I said I had already done all those things and already knew exactly where I would like him to go (and that he agreed); I was surprised that she was surprised – didn’t all parents start to worry about this once their child was in Year 4?

I was already fretting about it by the end of the summer term in 2018. I decided to do something about my worries, and I hit the ground running as soon as he went back to school in the September. We knew it would have to be a SEN High School, and that locally we had two options. I arranged visits to both during a normal school day so that I could suss out the feel of each place, see pupils and teachers interacting in the classrooms, and have a chat with a member of staff about the general ethos and working methods of the schools. I quickly developed a preference and luckily this school had a couple of weekend Open days for Year 5 families coming up so I could take Freddie and Daddy along to see it too.

My preference was duly noted by the LA ready for inclusion in his EHCP at his Year 6 Transition Review, and by the school so that they could begin preparing him for the move there.

At his Transition Review at the beginning of Year 6, I was told that it was unlikely we would get transport to school even though I cannot drive and the distance is further than a child with Freddie’s level of hypotonia and joint hypermobility can reasonably be expected to walk, even with an adult.

Does the LA really imagine that any parent has the time to spend four hours a day doing the school run? Luckily, Freddie’s current school went into bat for me.

Now that his new school was named on his EHCP the work of preparing him for the transition could begin. There would be visits to the new school, activities to take part in, visuals to support him. The transition would be carefully managed: he wouldn’t be just dropped in at the deep end.

I began to relax a little then, though there was always the lurking fear in the back of my mind that the school I had chosen might not offer him a place for one reason or another, even though it was named on his EHCP (that happened with my eldest child). If that happened the only other option we had was a school where he would have much less opportunity to make meaningful, reciprocal friendships – and one of the most important aspects of High School is the social education that it affords. All I could do was wait, and keep my fingers crossed.

I expected to receive an email about his school placement on 2nd March along with everybody else. I didn’t get one.

I queried this both with his current school, who didn’t know, and with the LA, who passed me from pillar to post as his keyworker was said to be either on leave, or on sick leave, or on maternity leave, depending on who I spoke to. Eventually, in desperation, I called the High School, and they told me that as far as they were concerned there was a place for him if we wanted it, but we’d have to wait for the official notification.

The week that I was finally officially notified that Freddie had not only been awarded a place at the school of our choice but also transport, was the first week of lockdown. Any relief I might have felt was immediately swept away by the realisation that all the planned preparation, the activities, the visits, would not now be able to take place.

Towards the end of June, I got a call from Freddie’s new school. They had managed to arrange some transition sessions if we would like to go – three new pupils at a time could visit the school for one hour a week and do an activity together, each sitting at separate tables.

The thought of taking him there in the middle of a pandemic made my stomach churn, but at the same time I knew he needed to go. I had no choice but to grit my teeth and, once again, trust strangers with the welfare of my child. I agreed.

Freddie was able to walk about a third of the way before he needed to climb into his wheelchair. I took us an hour to reach the school. After the first session, he started to look forward to the others – a chance to be with other kids again. Of all my children, Freddie has enjoyed school the most. I began, tentatively to look forward to September. Going back to school, even a new one, would be good for his mental health, and it would give me a chance to do the things I have not been able to, or have had to ignore, while Freddie has been at home.

At the end of July we received a letter detailing the school’s plans for the full reopening. It detailed:

Twice daily temperature checks.

Hand gelling/washing routines and the sanctions to apply if any pupil refuses to comply with this or other personal hygiene/social distancing/no touching rules.

Arrangements for dropping children off at school, including no engaging verbally with staff or other pupils (except in certain circumstances).

The requirement for personal vehicles to be cleaned daily or, at least, any surface that will be touched by your child, prior to bringing them to school.

A start time of 8.40 am, meaning that if school transport still is not running (or if the local authority continues to use private hire taxis as school transport, which I do not consider safe at the moment) that we will have to set out at 7.40 at the latest – a time of the morning when I would usually still be trying to coax Freddie to have a wash and get dressed.

A request for daily laundering of school uniform.

A request that no personal property be brought into school other than a plastic carrier bag containing the pupil’s packed lunch.

An announcement that the school kitchens would remain closed and so no hot food would be provided, and all pupils must bring a packed lunch to be eaten at their desk. Freddie has always had school dinners. He consistently refuses all sandwiches/packed lunch/picnic-suitable cold foods and has done for years. He detests them. I don’t know what I’m going to give him that he will actually eat. And no, he won’t ‘eat it if he’s hungry enough’.

I knew things would have to change when he started High school, but this is weird and outlandish and stressful and quite beyond anything I ever imagined. This may be our new routine, but will it ever come to feel like ‘normal’?

My eldest son was diagnosed with ADHD at the tender age of 22, and he’s still only 22, so I’m right at the beginning of a learning journey as far as ADHD is concerned.

As he is an adult, my role as parent is largely that of outside observer, on stand-by to give sage advice and practical help as and when necessary: though this is made much more difficult when you are dealing with things you know nothing about.

But aren’t we all winging it to some extent in life?

One thing I have learned about ADHD so far is that some people, quite a lot of people, think that it was invented in the 1980s or 90s as a fashionable excuse for bad behaviour and a lack of discipline in children.

Well, anyone who thinks that has another think coming. ADHD wasn’t invented then, or at any time – it has been observed as a fact of life for as long as people have been recording their observations in a way that survives for later generations to find.

Hippocrates (c. 460 – c. 370 BC) made what may have been the first mention of what seems to be ADHD. He made at least one reference to some patients who could not keep their focus on any one thing for long and had exceptionally quick reactions to the things around them.

He described it as an ‘an overbalance of fire over water’. Of course that is a very long time ago, when it was generally believed that it was the balance of ‘humours’ — vital elements and bodily fluids – that gave rise both to the temperament and the symptoms of illness, so it’s hardly scientific and we have no other details about these patients that would enable us to say whether or not they fitted the modern criteria necessary for a diagnosis of ADHD.

Indeed we do have to wait until the 90s before we get the first published description of what appears to be demonstrably ADHD – the 1790s that is!

In 1798 Scottish Physician Sir Alexander Crichton published a work spanning three books entitled: An Inquiry into the Nature and Origin of Mental Derangement (if he wasn’t already under the ground, I’d tell him to get in the sea for that title). In the second book he refers to what he describes as ‘the disease of attention’ and observes that people with this condition seemed to be ‘mentally restless’ and ‘have a hard time sticking with one task or game’.

He described: ‘the incapacity of attending, with a necessary degree of constancy, to any one object’: and ‘This faculty [of attention] is incessantly withdrawn from one impression to another’.

These descriptions are consistent with the symptom criteria listed in DSM IV (the current edition of the diagnostic manual of the American Psychiatric Association) thus:

‘Inattention: the difficulty sustaining attention in tasks or play activities’, and ‘is often easily distracted by extraneous stimuli’.

At about the same time philosopher and physician John Locke wrote an essay: Some Thoughts Concerning Education, in which, among other things, he discussed a group of students who, he observed, could not ‘keep their minds from straying’ (However, without further details I can’t help wondering whether he was just a boring lecturer.)

Medical textbooks of the 1800s refer to children who today we might recognise as displaying symptoms consistent with ADHD, but back then they were referred to in terms such as ‘nervous child’, ‘mental instability’, ‘unstable nervous system’, and ‘simple hyperexcitability’.

I don’t know about recognising ADHD from that list of unfortunate terminology, but I certainly recognise some of the descriptions applied to me as a child. I can’t count how many times I was described as ‘highly strung’ and ‘nervous’.

In 1902 Sir George Still, the first professor of paediatrics in England, at Kings College Hospital, often referred to as the ‘father of British Paediatrics, gave three lectures about children who had difficulty paying attention for a long time.

He noted they displayed difficulties with self-regulation, and could be aggressive, emotional or defiant (I have a sudden sense of déjà vu – here I am again: the little girl in a pink coat, with a bad attitude).

This he described as ‘an abnormal defect of moral conduct in children’. It should be noted that, though some of the symptoms he described are consistent with ADHD, many others are not.

He’s another one who can get in the sea as far as I’m concerned. In fact, I’ve a mind to exhume his coffin and float it out on the briny blue myself: ADHD has nothing to do with morality and the traits observed are not character defects, but rather manifestations of the difficulties that people with ADHD face in a world that is not supportive of their way of functioning.

Similarly, Conduct Disorder, ODD, PDA, and whatever other conditions may be consistent with those of his observations that do not fit ADHD, are not defects in a person’s morality or character.

In 1932, some 50-60 years before ADHD was supposedly invented to let lazy parents off the disciplinary hook, two German physicians, Franz Kramer and Hans Pollnow described a condition that they called Hyperkinetic Disorder of Infancy, the main symptoms of which are very similar to current concepts of ADHD.

It was in 1937, again, way before it became fashionable to medicate naughty children instead of disciplining them (I am being sarcastic, of course, in case you hadn’t noticed — you can’t beat that out of people either — my parents tried but it just made me worse) that American doctor Charles Bradley noted an improvement in behaviour and school performance in some children to whom he had administered Benzedrine (he was attempting to treat the severe headache, caused by the pneumoencephalogram procedure he had subjected them to in order to examine their brain, by stimulating the Choroid Plexus – it didn’t work).

He identified the children most likely to respond to Benzedrine in this way as ‘characterised by short attention span, dyscalculia, mood lability (not a typo), hyperactivity, impulsiveness, and poor memory’ – traits we would now associate with ADHD.

It wasn’t until the late 1960s that the APA (American Psychiatric Association) formally recognised what we now know as ADHD as a diagnosis. It was included in their diagnostic manual or DSM when the second edition was published in 1968. Then it was known as Hyperkinetic Impulse Disorder.

When the third edition of the DSM (DSM III) came out in 1980 the name was changed to Attention Deficit Disorder. The listing created two subtypes of ADD:
ADD with hyperactivity, and ADD without hyperactivity.

A revised edition in 1987 removed the hyperactivity distinction, and combined the three symptoms (inattentiveness, impulsivity and hyperactivity) into a single type now called Attention Deficit Hyperactivity Disorder or ADHD.

It was only with the release of the fourth edition of the DSM (DSM IV) in 2000 that the three subtypes of ADHD used by healthcare professionals today were established

1. Combined type ADHD

2. Predominantly inattentive type ADHD

3. Predominantly hyperactive type ADHD

Scientists are still trying to identify the causes of ADHD: research so far points to a very strong genetic link.

No, no, no, that can’t be right, says the woman who left the house yesterday not only without picking up her keys, but also without even shutting the front door.

So, to sum up – if you’re one of those people who blames the parents for their child’s ADHD then rest easy, because you still can.

You won’t have to change your views one iota, except the one about spanking the ADHD out of them.

And I hope you’ve brought your inappropriate speedos, because you know where you can get, don’t you …

That’s right …

And make it the North Sea. In February.

An early miscarriage is a lonely experience.

From the moment you conceive, hormones begin to make profound changes to your body in preparation for the birth and nurturing of a tiny human.

Even before you yourself realise that you are pregnant you may already notice a funny taste in your mouth; in place of the heavy, dragging ache that signals impending menstruation you may feel a strange tingling sensation, somewhere between excitement and cystitis, in your lower belly; your sense of smell may become weirdly acute.

Only you will be aware of this: there is no outward sign yet that announces your pregnancy to the world.

If you miscarry, there is no outward sign to show that anything has happened.

To the people around you, it is a non-event.

Early miscarriages happen away from the gaze of others: tucked away in bathrooms and bedrooms, or under clothes carefully chosen to hide thick padding, while you go about your daily obligations in the midst of personal disaster, your heart breaking quietly so as not to disturb anyone else.

If the miscarriages are recurrent, the grief is compound.

Each time you grieve not only the child you have just lost, but all the ones that you have lost before, all over again.

You grieve because your chances of motherhood diminish further with each new loss. You grieve because your sense of womanhood is bleeding to death.

And you grieve alone: even if other people knew you were pregnant. Unthinking, they utter placatory comments not to comfort you, but to comfort themselves, because they are made uncomfortable by your experience and your grief.

People don’t give you their condolences, they give you reasons why you shouldn’t be grieving.

There are no rituals associated with early miscarriage except for the ritual of denial:

‘You weren’t really pregnant – there was just a space for a baby.’ (Yes, I was. I had a positive pregnancy test. I had a scan.)

‘You’re young, there’ll be other babies.’ (But I wanted this one).

‘Chin up – at least you know you can get pregnant.’ (But that’s no use if I can’t stay pregnant long enough to give birth.

‘It wasn’t meant to be.’ (Then why did I conceive in the first place?)

The one I heard most often, though, was:

‘There must have been something wrong with it. It’s nature’s way.’

This was never a comfort, because I never believed it was true.

Each time I miscarried the ‘products of conception’ as they are so charmingly referred to medically, were sent off for histological examination, and each time they came back N.A.D – nothing abnormal detected.

My husband and I were examined also, down to an almost molecular level, and likewise, we were genetically N.A.D.

Eventually a likely cause was discovered – a peculiarity with blood clotting that the junior doctor struggled to explain to me in layman’s terms.

I was prescribed a combination of aspirin and heparin, and subsequently went on to have three children.

I did not lose my babies because there was ‘something wrong’ with them. Every day ‘normal’ or ‘healthy’ babies are lost and, every day, babies with congenital conditions and disabilities are born and survive.

Miscarriage is not nature’s way of weeding out individuals who ‘are not fit to live’. Nature does not have ‘a way’ or ‘a plan’ for dealing with disability. Nature does not make moral judgements on who deserves a shot at life and who doesn’t. Mankind does that.

When ‘Mother Nature’ fails to live up to mankind’s expectations of what she should do, he takes it upon himself to rectify her deficits: he invents ways to detect congenital conditions in the womb so that he can make sure affected pregnancies are ended by artificial means, in case nature fails to do the job he thinks she should.

The flagship condition for this kind of antenatal screening is Down’s Syndrome – it’s the one that most people have heard of.

It is one of the most feared and demonised congenital conditions. It may surprise you to learn that Down’s Syndrome, of itself, is not a fatal condition and it most commonly causes only mild to moderate learning disability.

It does carry a greater likelihood of certain additional or ‘co-morbid’ medical conditions; but most of these are treatable or manageable and can also occur in people without Down’s Syndrome.

People with Down’s can and do live happy and fulfilling lives, and so do their families. I know this because the youngest of my three children has it.

He was diagnosed antenatally. By then I knew the pain of pregnancy loss well enough to know that I could never bear to put myself through it voluntarily.

Too many times I had been carried into hospital bleeding heavily to be told by the doctor that miscarriage was now inevitable and there was nothing anyone could do.

This time, as the doctor explained to me, in not so many words, that I really must ‘lose’ this baby for the good everyone, I knew that the loss was not inevitable, there was something that could be done.

This time I had the power to say no to loss and the awful, lonely grief that comes after.

Every year in October I see posts on social media expressing sympathy for all those who have lost babies due to Termination for Medical Abnormality: often the women themselves will euphemistically express it as having ‘lost [the baby] to Down’s Syndrome’ (or other condition).

But they haven’t really. They lost their baby to society’s ignorance and prejudice.

Many of them will have been led to believe that their loss is inevitable by the medical professionals involved in their care.

They are given the worst-case scenario of Down’s Syndrome: told that the baby will probably not survive the pregnancy, or will inevitably have many serious complications, that their marriage and their other children will be adversely affected.

The ‘what-if-everything-that-can-go-wrong-does-go-wrong’ picture is presented to them as though it were a snapshot of everyday reality.

This reinforces the view that people with Down’s Syndrome lead lives of suffering, and that their families suffer too.

It reinforces the view that Disabled people are better off dead; that it is a kindness, a mercy, an act of love, to spare such babies from having to live.

The prevention of suffering is one of the most commonly expressed rationales behind the test-and-terminate mentality of the antenatal screening process. But just who exactly are they trying to spare? Studies have shown that the majority of people with Down’s Syndrome are happy with their lives, and so are their families.

The truth is that more individual suffering may be caused than alleviated.

The negatively-biased information often given to expectant mothers, either contained in literature, or by word of mouth from the professionals themselves, is inaccurate and misleading.

It paints a picture of Down’s syndrome that would not be recognised by anyone with lived experience of the condition.

When we give women only negatively-biased information about Down’s Syndrome at any point in the testing or diagnostic process we subtly (and not so subtly) steer their choices in a particular direction – towards termination as the first and best option.

This is enforced choice. This is no choice at all.

Enforced choice pushes women into choosing unnecessary and avoidable baby loss. It pushes women into unnecessary and avoidable grief, which can have a very detrimental effect on their overall mental health; especially if that decision was made because they were being pushed to decide quickly, and abortion was repeatedly presented to them as the first, best, and kindest option.

But there is another way. What if we gave women unbiased accurate information provided not just by medical professionals but by people with lived experience of Down’s Syndrome?

What if we supported women who express a wish or inclination to continue with their pregnancy regardless, and gave them an opportunity to prepare properly, and in hope, for their special new arrival, instead of undermining their judgement by repeatedly asking them to consider termination instead?

What if we just accepted their choice and didn’t make them fight for it as I had to fight for mine?

Of course, I can’t tell any other woman exactly what her life would be like as the parent of a child with Down’s Syndrome.

I can’t predict exactly the what challenges they would face. I’m not going to lie to you, I’ve had some difficult and exhausting times.

But, equally, I’ve had many utterly joyful times.

Most days fall somewhere in between – simply ordinary and contented days where I navigate life much the same as anyone else.

There is never any lack of love, or pride in my son. But what I can tell you, hand on heart, is this: living with my child with Down’s Syndrome, dealing with him every day, is a heck of a lot easier and better than grieving for him would have been.

Take it from one who knows.

Before you read this post I should warn you that sometimes I can be a little bit sarcastic.

What do I love about being the parent of a child with special needs?

I love my kids.

Yeah -that’s right! I love all three of the little buggers – even the ‘normal’ one who doesn’t bring me loads of sympathy, a get-out-of-jail-free card, or shed-loads of benefits. She is great at dealing with her siblings though, so she does have her uses.

I love being a parent.

I had problems having kids, so any kind of kid is better than none at all! And parenting is SO much easier when you don’t have to worry about dressing the little sods in the latest Instagram-ready outfits, or buying them the latest must-have toys, or fighting to get them into the best school; when you don’t have to spend your evenings running them to Scouts, Brownies, football, dance classes, judo,etc; and when you don’t have to worry about SATs or GCSEs, or university.

We ‘special needs’ parents don’t know we’re born, right?

I love that I don’t have to discipline my kids or teach them manners.

OK, let’s stop right there. I did warn you that I can be sarcastic.

Right now, I’m being very snarky indeed. I shouldn’t have to explain what I love about parenting a child with ‘special needs’.

I wouldn’t have to explain it to another ‘special needs’ parent.

They would understand: not only the kind of things that I might love about parenting a child with a disability or additional needs, but they would understand that there ARE many things to love about this kind of parenting.

Most of the rest of the world doesn’t understand this: they have so many misconceptions and myths clamped firmly in their jaws, like badly-trained bulldogs that won’t let go of a thing until they’re prised off with a stick.

There’s the eye-rolling mummy in the supermarket who thinks our children behave in unexpected ways because we don’t bother to parent them; the bitter keyboard warrior bashing out the assertion that our children are just a meal-ticket, that you only have to take your child to the doctor and ask for a diagnosis of ADHD and you immediately get four times the amount of state benefits that anyone else gets; and the blinkered old fart who says that he once met one mother who said she didn’t love her disabled child and wished she’d never had him, and therefore this is undoubtedly true of all others.

These are the people who need an explanation, whether they want one or not. And these are the people who make me feel the most sarcastic.

But, instead, here is my polite and honest answer to the question ‘What do you love about being the parent of a child with special needs?’, which will, of course, immediately be discounted by anyone who really needs to hear it:

I love my kids: All three of them, equally.

I love them because they are mine, and I love them for exactly who they are.

It has been, and still is, fascinating watching their personalities, interests, and aptitudes developing, watching them become ‘their own people’.

I love that I can see different shades of both myself and their dad in each of them.

I love seeing them achieve – it doesn’t matter what the achievement is, so long it represents progress or a personal best, all are equally a cause for celebration.

To be honest, I just love to see them try, because having the confidence to try things is the most important first step, a thing I myself have so often lacked. I love to see them go out into the world and enjoy life in spite of the challenges they face.

I love that, perhaps because we have faced more challenges, we are a very close family unit.

I love being a parent: I suffered recurrent miscarriages before finally becoming a mum, so to me, parenthood feels like a privilege rather than an automatic right.

The love a child brings into the world with them is the most marvellous gift ever, and the feeling of holding my children in my arms, warm and moving and vibrating with life, is something I will be in awe of for the rest of my life.

I will never get over my delight in them. I take immense pride in trying to be exactly the parent each of them needs, and they’ve each needed something slightly different.

I love reading stories at night, picnics, trips to the zoo, the seaside, and the cinema, family holidays, meals round the table, going to the pantomime, the excitement and togetherness of Christmas.

My parenting life is not different to ‘typical’ family life, it just has some extras, and the full-on parenting demands that come with young children will go on for a while longer than usual.

If I haven’t been able to have a career because of my children’s needs, then that’s not a tragedy, and it’s certainly not a ‘waste of my education’.

I can’t think of a better use for my energy and creativity than finding ways to help my own children thrive in a world that makes life far more difficult for them than it needs to be.

Here are five and a half things that my children with special needs have taught me:

That this moment is all we have, make the most of it: For me, getting washed and dressed in the morning is a chore to be got through as quickly as possible so I can move on to doing all the important things I have to do today. But Freddie makes the most of it as an opportunity for pleasure and fun.

He likes to have a freshen up in the bidet just for the pleasure of sitting in the warm water. Unconcerned about the need to be at school for nine o’clock he allows himself to be totally absorbed in the moment, savouring the sensation.

As I fill the basin so he can wash his face, he seizes the chance to play a game – aiming his flannel at the water from the other side of the room to see if he can get it in first go.

The walk to school is an event in itself: there are puddles to splash in, walls to balance on, dogs to stroke, their owners quizzed about the dog’s name, breed and age.

That true love is not expressed in words or gifts: The love between my children and me isn’t blurted out at the end of a hurried phone call, it doesn’t come wrapped in extravagant paper and bows.

It’s in the middle-of-the-night call at a moment of crisis, when there’s nothing practical you can do to help at that minute, but they just want to hear your voice, hear you reassure them everything’s going to be okay because together you’ll work something out.

It’s even in the bite they give you at a moment of utter frustration that they can’t express, because they feel safe with you, they know you won’t retaliate, they know you’ll forgive them, comfort them, help them calm down.

That I am more resilient and resourceful than I ever guessed: Unlike ‘typically-developing’ children who do come with a manual of sorts – in the form of the advice that can be given by family and friends who were parents before you – a child with additional needs comes with no such guide.

And when no one in my family had any experience of parenting a child like mine, and when support from professionals was thin on the ground or non-existent, I have so often had to make it up as I go along, and work out for myself how to help and support my children.

And I’ve done it – usually from a somewhat bewildered standing start. I think I deserve a sticker — is there a sticker for this?

That the phrase ‘to die for’ is utterly ridiculous and annoying: I know it’s just hyperbole and not meant to be taken seriously, but just how ludicrous is it to suggest that any chocolate based dessert, pair of shoes or new handbag, any material thing on this earth, in fact, is ‘to die for’.

Your children, on the other hand, now there’s something worth dying for, and, if you’re the parent of a disabled child, the fight to secure their rights and their future is likely to be one hill that you’re more than prepared to die on.

That perfection is a subjective concept. You might look at my life and think; ‘No way, I don’t want a kid like that – if I get pregnant, I’ll have every test going; hell, they should invent more tests!’ Let me tell you, anyone who confines themselves only to accepting people who are ‘normal’ into their life risks missing out on an awful lot.

In my eyes my children are perfect, just as they are. And they are the perfect children for me.

No — actually, perfection is not a subjective concept, it’s a myth.

Nothing is  perfect — no person, no object, no situation.

So, if it’s the perfect life you’re chasing then you’re going to be disappointed. It doesn’t exist.

Once you’ve realised this, though, a good life — a happy and contented life — is much more easily achievable. That said, my children will always be perfect in my eyes simply because they are exactly who they were meant to be, and they have brought so many joyous and unexpected things into my life, which I could never have imagined before they came along.

Which brings us back to the first point – making the most of what’s right in front of you.

So, to sum it all up in a nutshell, I think that the most important thing that being the parent of children with special needs has taught me is what my priorities are.

They’ve taught me lots more besides, but this is a blog post, not a novel, and I’m sure your coffee break is nearly over, so we’ll leave the rest for another day, another post: or perhaps a whole series of them, because learning is a lifelong process for all of us.