The Sound Of Silencing.

I have seen the phrase ‘virtue signalling’ bandied about a lot on social media this past week or so — mostly it seems to have been used by white people against other white people, or companies, who have expressed support for the Black Lives Matter movement.

I’ve been accused of it myself in the past when talking about Disability.

An accusation of ‘virtue signalling’ is code for ‘Shut up! You’re telling a truth that makes me uncomfortable’. It’s an easy accusation to make when you don’t know someone’s background, and an effective one when the person you’re accusing bears no obvious connection to the cause they are supporting.

After all, why else would a white, straight, cisgendered, abled person like myself concern themselves with Black Lives Matter, or Disabled lives, Gay lives, Trans lives, and so on, if not simply to demonstrate to the world how good, how virtuous, how cool, on trend, and generally fabulous they are, right?

I mean, it couldn’t possibly be that they are compassionate, empathetic, open-minded people who care about injustice even when it doesn’t directly affect them, perhaps understanding that, but for the random fortunes of birth, they could easily be the one in that position. It couldn’t possibly be that someone they care about IS directly affected. It couldn’t possibly be that they have had some kind of experience that has opened their eyes. No — it’s as plain as the nose on your (blinkered) face that they’re just shallow show-offs being all politically correct and ‘right on’.

I became a politically correct, right on, virtue signaller when I became the mother of a Disabled child. Suddenly I began to see that the world outside my comfortable little bubble treats some people as though they are unwanted: a problem. Having a Disabled child taught me what it was like to feel vulnerable. It came as a shock. I’d never felt that way before. I’d never been afraid of anyone, and I realised that this had nothing to do with bravery or boldness: it was privilege – I’d been living inside an armoured shell and had never needed to be afraid. Some people are never allowed to have that security, that sense of safety. It was humbling realisation.

I learnt what it feels like when other mothers pull their child away from yours in the playground; what it feels like when people stare at you, watch you, in public places; what it feels like when a perfectly polite and reasonable request to be given the same rights and opportunities that everyone else takes for granted is treated as though you are asking for special privileges or more than your fair share.

So, when I express support for Black Lives Matter, or for Disabled Lives, or Gay rights or Trans rights, etc, it is because I have some small inkling of the microaggressions, the rejections, ostracism, othering and begrudging that Black people, and all people who belong to marginalised groups, experience every single day. And although I have never, and will never, experience the things that they experience, and can never truly understand the struggles they face, I have a … fellow feeling, a sympathy, untutored though it may be. I hear their pain and I know they are speaking the truth. And I continue listening, because I know I still have a lot to learn.

And, of course, I also know that the ethically bankrupt, pseudo-scientific mythology of Race Science that falsely shaped our ideas on humanity is the inextricably-conjoined twin of the Eugenics movement that seeks to tell me that my son’s life is worthless. The world has forced me to take an interest in some difficult subjects these past few years.

While we are talking about the worth of a human life, do not quote to me that trite, cop-out, non-statement ‘All Lives Matter’. It wilfully ignores the fact that, whilst every human life ought to matter equally, SOME lives are treated as though they matter less, SOME lives are endangered purely because of the colour of their skin, or their sexuality, their gender identification, or disability.

It allows those using it to appear as though they are taking the moral high ground on equality when in fact they are deepening inequality by denying those from marginalised groups a voice, by shutting them down when they try to talk about the unique struggles, challenges and dangers that they face. It is just another way of silencing people.

So, if you’ve said either of those things to me, or anyone else this week, please know that I hear you too. I know what you’re saying, even if you’re not consciously aware of it yourself — you are asserting, loud and clear, that your ‘right’ to always feel comfortable matters more to you than anyone else’s rights or life.

Peppa Pig Saves The Day: Life In The Time Of Corona.

I know I said I needed to go on a diet …

but this isn’t quite what I had in mind …

I can’t get a delivery of groceries before the 30th March, and I am now completely out of potatoes, and fresh, frozen and tinned vegetables.

Venturing out for supplies feels like stepping out into the landscape of The Walking Dead or something, wondering if this is the time I’ll get infected and carry the virus home to my loved ones — to my parents, to Daddy, to Lucy, whose last admission for breathing difficulties is still fresh in my mind. She’d gone to a Girl Guides event even though she was feeling slightly under the weather, because she was providing one-to-one support for a younger Guide with additional needs. She ended up being ambulanced off the field. Later, she was given a jokey award for ‘fastest exit from Sparkle’, but I found it hard to laugh because it reminded me of the nurse whispering that it was ‘query sepsis’, and then telling me I’d have to leave her alone in a hospital twenty miles from home because she was on an adult ward.

There comes a time in every intense or suspenseful narrative when you need a little light relief, something to break the tension and allow the reader or viewer to catch a breath.

Daddy and I were debating between me going to the shop at the quietest time, or at the time when they were most likely to still have some stuff left, when a friend came to the rescue. She texted me to say she was going to the shop, was I running short of anything? I asked her, if she was going out anyway, would she mind looking for some potatoes, carrots and frozen peas for me?

Only a short while later she was on my doorstep clutching a carrier bag. She told me there was no fresh stuff left and very little frozen, but she had managed to bag me something.

‘Don’t laugh,’ she said. ‘It was all they had left.’ And she pulled out two bags of PEPPA PIG FROZEN PEAS AND CARROTS.

The carrots were even cut in the shape of Peppa’s head!

Honestly, I think the universe is mocking me. Everyone in our house knows how much I hate Peppa Pig, because watching it has such a deleterious effect on Freddie’s behaviour. Even the teachers at school know I’ve banned it from the house. I’ve been known to pick George Pig cuddly toys off supermarket shelves and punch them across the aisle (providing there’s no one else nearby). Lucy and I have our own secret club called the Royal Society for the Prevention of Peppa Pig, whose emblem is a pan of sizzling lardons, and she likes to torment me with Peppa Pig memes and videos, to which I am sorely tempted to respond with a picture of a bacon butty.

But tonight, sudddnly I didn’t hate the sight of Peppa, because it meant I’ve got veg for the next few days so I don’t have to go out. And it gave us all the best laugh we’ve had in a very bizarre and worrying week.

It’s poetic justice. Maybe this crisis has something to teach us all.

And I’d like to say a big thank you to my very kind and thoughtful friend Xx

Life In The Time Of Corona: Skipped.

Lucy was supposed to drive up to Skipton today to do some kind of assessment for her apprenticeship, but now that she’s self-isolating that can’t happen.

‘Surely they can arrange for you to take it from home, online?’ I said.

‘No, they can’t,’ she replied.

‘Why ever not?’

‘Because I can’t lay concrete in my bedroom!’

Note to Lucy – no apostrophes 😉

Life In The Time Of Corona: Virtual Lockdown.

You know how it is — you’ve just washed the last paintbrush, positioned the headboard so that it hides the place where you bashed a hole in the new wallpaper before your husband had even got the paste-bucket washed out, and arranged the pot-plants to best advantage on the new shelves, then along comes a global pandemic that turns your tastefully renovated bedroom into something resembling the aftermath of a hurricane in Furniture Mine. I fell asleep last night with the disconcerting impression that I was bedding down in my husband’s place of work. By the time I’d had my shower this morning he was already at his desk wearing the full shirt, tie and suit jacket combo — I didn’t dare look to see what he had on under the desk.

Following government advice that anyone with a chronic lung condition should self-isolate, for potentially up to twelve weeks, Daddy is now also working from home wherever possible. Yesterday we decided it would be best to temporarily withdraw Freddie from school, to protect Daddy, Lucy, and our elderly parents who really cannot do without our help. Each new day we are having to make decisions that balance the need to protect their physical health against the need to protect their mental health. Freddie’s school were very supportive of our decision, given the circumstances.

Just two weeks ago I couldn’t have felt much more content. But Coronavirus has brought home to me just how vulnerable my family are, just how fragile are the foundations on which my whole world rests. It’s a very disturbing feeling.

This latest home office we’ve had to set up is much less Heath Robinson than the first, because Daddy has commandeered my desk, which usually lurks under the stairs. Even I was shocked at the teetering pile of crumbs behind it which came halfway up a skirting board of 1930s dimensions. I did briefly consider scooping them up and bunging them in freezer in case I couldn’t get any chicken dippers, but I’m not a complete slut (just an amateur slattern), so I threw them in the bin. Having now tried to book a delivery slot for this week’s grocery order, I realise this is a decision I may regret when I am forced to catapult the pigeons on our lawn to make us a dinner – breadcrumbs could be the difference between roadkill and Gastropub. Pigeon nugget, anyone?

Because Lucy and Daddy each have an ‘office’, Freddie wanted one too. So we cleared the junk off his desk and stuck a note on his door detailing his ‘office hours’. His is the best. The only person who doesn’t have an office now is me. I am forced to write at the dining table, on the late shift after Freddie is in bed. This is most unsatisfactory. The dining room is the main thoroughfare to the kitchen and people WILL insist on talking to me as they go past. Like I’m available. Or some kind of kitchen receptionist: ‘Oh, hello – I’m here for my eleven o’clock with a peanut butter, cheese and gherkin sandwich, have we got any in?’

I may have to start wearing this …

Or perhaps this plague is God’s way of saying: ‘Maybe everyone HAS got a book inside them, but in your case that’s exactly where it should stay’.

On the upside, I now know where all the bread goes, and where all the dishes come from that magically appear overnight.

Life In The Time Of Corona: Sent Home.

Yesterday, even before the new government advice about #SocialDistancing was issued, my daughter was given permission by her employers to work from home for as long as she needs to, due to her own underlying health conditions. But, while she was speaking to someone in HR in order to arrange this, she confided her worries about carrying the virus home to Freddie. The HR person was very sympathetic – turns out they also had a sibling with Down’s (sadly now passed away). They said that if their sibling was still alive, right now they’d be doing everything in their power to protect them, too.

There is a lot of love – real, fierce, love in our community. At times like this we need to sprinkle that shit about like confetti.

This is Lucy’s home office. It’s a good job she won’t need to be smart for work.

#covid19 #SocialDistancing #Asthma #AutoimmuneHypothyroidism #DownSyndrome

Life In The Time of Corona.

So much for our New Year’s resolution to get out and about more. At the end of last week we took the decision to limit all non-essential contact as much as possible. Not only is Freddie more vulnerable to infection due to his extra chromosome, but my husband and daughter both have chronic, moderately severe asthma, and then there are the frail, elderly grandparents to consider. My mother said: ‘don’t worry about us, we’ve had our time,’ but I’m not ready to let go of them yet.

Fuck off to hell Boris Johnson, and your unelected whatever-he’s-meant-to-be, Demonic Scummings. Fuck right off to hell you scruffy pair of posturing, populist, pseudo-science-worshipping, know-everything-and-know-nothing, duplicitous, elitist, eugenicist cunts and take your mass experiment in Social Darwinism with you. I refuse to keep calm and carry on and just blithely accept that I will lose loved ones before their time.

So this week I decided to do our weekly grocery shop online. Thanks to social media I already had an idea that there might not be any delivery slots left this side of the next blue moon, but click and collect seemed a reasonable option — I wouldn’t have to go into the store, just grab my order out of a locker on the car park and shoot off again. No human contact, just wash my hands when I got home, which, not being a grubby little sod, I would always do anyway. Luckily, they had slots available only two days hence, on Saturday morning.

So we rocked up on Saturday and I entered my order number, hoping that the previous person hadn’t sneezed on the keypad or been picking their nose whilst waiting in the queue of traffic to get onto the retail park. I was a bit surprised when it only showed two locker numbers because I’d ordered quite a lot of stuff (there are six of us to feed and clean up after), and extremely disconcerted when I opened them to find only a few chilled and frozen items inside. Where was everything else? Taped to the locker unit was a note with a telephone number to ring in case of any problems.

A woman answered. I explained. She said she’d be right back in two minutes, then left me on hold for so long that I was left in no doubt that she had thrown down the phone, run screaming out of the office and escaped through a toilet window.

Eventually a member of staff slouched across the car park and stood looking expectantly at the car, where I was still waiting for someone to tell me what was going on. I got out and explained again. He phoned someone and then said the rest of our stuff was in a van in the loading bay.

We drove round and a man was waiting for us with one of those plastic delivery crates. I said it didn’t look much, but he said that’s all there was, and there were several bags in there. But as we put it in the boot it was obvious that the bags contained three boxes of cereal and not much else. I went back to the loading bay and spoke to a third guy. He couldn’t help, so he said he’d fetch the section head.

The section head came, explained that, due to a technical hitch as our order was being loaded into the locker, the rest of our stuff was now trapped inside said locker, which had slammed shut halfway through and then refused to open. And they weren’t sure which locker it was.

So much for minimal human contact. I could’ve gone into the store and had close contact with fewer people.

At least there weren’t any bizarre substitutions — probably because there was nothing left to substitute my missing choices with. I had been half-hoping that in the absence of alcohol-based hand sanitising gel they would substitute it with something else alcohol-based, like vodka, for the same price.

But a bottle of hand gel costs more than a bottle of vodka now, anyway.

Stay safe, peeps.

Number Day.

NSPCC Number Day is a maths-inspired fundraising initiative from the NSPCC for children from nursery age through to secondary school. Schools are encouraged to participate in fun curriculum-based activities, with downloadable resources for all ages and abilities available for free, and pupils are encouraged to ‘Dress Up For Digits’, and make a small donation for the privilege of wearing number-themed clothing for school.

Oh God, how I dread these school dressing up days. They tend to leap out at you from nowhere, or, at least, from the depths of your kids schoolbag, in the form of a sheet of yellow paper giving you two days notice to pull together a themed outfit worthy of an Oscar for costume design, or else …

… your child will be the only one without a costume … or without a prize … they’ll be humiliated by the other kids … they’ll be scarred for life and forever hold it against you … you’ll be sneered at by the Alpha Mummies … you’re a shit mother and it’s official.

It’s not always logistically or financially possible to just nip out and pick up a ready-made dressing up outfit in that time. Perhaps in future I should remember to purchase a yearly calendar of Awareness Days, and spend my nights in the hobby room running things up on the Singer just in case, instead of being self-indulgent and going to sleep so that I have the energy and patience to deal with everyone the next day. How very un-womanly of me!

Yes, school dressing up days are the Universe’s way of saying to me: ‘You’re shit, you know you are, and don’t you forget it.’

Anyway, how on earth DO you ‘dress up’ as a number?

I suppose you could have sent Freddie to school wearing a piece of clothing with a number on it, but he doesn’t have anything in his wardrobe with a number-themed logo. In any case, he was adamant that he wanted to dress up as a Numberblock.

img_0869

Easy-peasy-lemon-squeezy! All I needed was a big cardboard box, some poster paints, and enough skill to cut the neck and armholes in the right places and paint the box without daubing the whole garage. But, as I had none of those things, and as Freddie would need to be able to fit through doorways, sit at his desk, and get himself changed for his school swimming lesson at the public pool, that was a none-starter.

I racked my brain for a whole day and ended up with nothing more than a racked brain. I could already picture his disappointed little face as he was forced to pull on his school uniform instead of dressing up on Friday morning. With only one day to go I resigned myself to accepting my fundamental mediocrity and just doing the best I could, hoping that the result wouldn’t be too awful. ‘Mummy tried her best’ might be slightly more consoling than ‘mummy couldn’t think of anything’; at least he’s have the choice of whether to wear it or not.

On Thursday I scoured the local shops for any inexpensive bits that might help me make something. I had a lightbulb moment when I spotted a half-price packet of basic Sharpies. The idea evolved a bit further when I found some black and white pipe cleaners. Having spent money on these items I was now committed to this idea whether it was a good one or not. I suspected not.

Once Freddie was in bed, I took a white t-shirt of mine and one of my hairbands, and sacrificed them on the altar of … well, on the dining table, actually. I cut the fabric off the hairband, stripping it back to the plastic, and asked Daddy if he could fashion a number ten out of pipe cleaners and attach it to the band so that it would look like it was floating above Freddie’s head, then I set about the t-shirt with the Sharpies, dividing the front into ten ‘blocks’ and drawing on an approximately appropriate face. Then we put them in his bedroom.

His squeal of delight when his sister went into his room and said ‘look what Mummy and Daddy have made for you’ was worthy of Christmas morning. As shit as I thought that t-shirt was, he loved it and couldn’t wait to put it on. He was especially taken with the number ten deelieboppers Daddy had made.

That outfit would never get me inducted into the Alpha Mummies Club, but I just didn’t care. Freddie was happy and that’s all that matters.

img_0861

 

The F-Plan.

I didn’t half feel a berk last Friday, coming home from the school run pushing a three-quarters-eaten plate of beans on toast along in a wheelchair.

It all started because we ran out of milk. Because we had no milk for Freddie’s usual breakfast of cereal and toast, I asked him if he’d like to have potato waffles and beans for a change. He said he wanted potato waffles and beans on toast, so I suggested I cook one waffle, one slice of toast and some beans, and he agreed to this. But when he came downstairs he got upset that there was only one waffle, not two, and refused to eat. I told him that if he ate all the waffle, toast and beans and was still hungry after, then I would cook another waffle — they don’t take long in the toaster if you crank it up to the maximum and hit the defrost button. But no, that didn’t satisfy him, and he started swearing at me — ‘You fucking, fucking, fuck’.

I don’t know where he’s picked up this kind of language, but, to be fair, you hear it thrown around in the street these days as part of normal discourse. A single profanity can perform the function of noun, verb, or adjective, and sometimes all of the above in the same sentence. And once your child goes to school then, whatever kind of school you send them to, they will be exposed to influences outside your control.

I told him I wouldn’t sit with him if he carried on swearing.

He carried on.

So I took my toast and coffee into another room. After a while he went quiet, so I came out, but the minute he saw me he began swearing again. So I took my breakfast upstairs. Once again he went quiet after a few minutes. But as soon as he heard me set foot on the stairs, the swearing started again — ‘on the fucking stairs’. I went back into the bedroom. This time, after a few minutes he came up and started banging on the door, still swearing. I didn’t know what to do to break the impasse. The clock in the hall was ticking. It was already twenty-to-nine and he hadn’t taken a single bite of his breakfast.

I went downstairs, got my boots and coat, and told him it was time to get his splints and shoes on. Then, of course, (of course), he suddenly wanted to eat his breakfast, started screaming that he wanted to eat his breakfast (but at least he wasn’t screaming that he wanted to eat his ‘fucking’ breakfast. I told him the faster he got his shoes on, the more time we’d have to try to eat some food before we had to set off for school. He wasn’t having any of that. He kicked me off furiously, snatched the splints and then the shoes and launched them at me. Only now he wasn’t angry: he was crying, really crying. And it was nearly nine O’clock.

In the end I did something I normally absolutely will not do — I got the wheelchair out for the school run. I chucked everything — bag, coat, splints, shoes, and breakfast, into the porch. Somehow I hustled Freddie into the porch, too, no mean feat as he’s three-quarters my height, quite heavy, and very strong. It is probably this kind of thing, rather than the Pilates deficiency that my doctor diagnosed, that accounts for the state of my back.

I told him that if he sat in the chair we could take breakfast with us and he could eat it on the way. I lifted the chair outside (it won’t go over the step) and he let me put his shoes and coat on.

We only saw one person on the way down to school — an elderly chap we often see walking his dogs (luckily they weren’t hungry or Freddie may have ended up with two excited Shih-Tzus on his lap as well as his dish), and he didn’t pass any kind of comment on seeing an eleven-year-old who usually walks being pushed along the street in a chair scoffing beans on toast from a large pasta bowl.

By the time we got to school Freddie was much calmer and had eaten his fill.

It was only at this point that I realised I had given no thought to how I was going to get the bowl home again given that I needed both hands to push the chair. And what would I do in the event of an encounter with a peckish canine?

In fact the whole incident had happened because I hadn’t thought about what I was going to do, because I didn’t have a plan. I reflected on this as I walked home.

Usually, when I’m dealing with Freddie, especially in a situation where he may not want to cooperate, I have a plan. If he does that, I will do this, then if he does this, I will do that, and if he doesn’t cooperate with that, I will do the other: all designed to reduce conflict, de-escalate the situation, and change the behavioural momentum. But when he started swearing, it took me by surprise, and so I had no plan to follow. My first thought was to nip it in the bud, let him know that it is unacceptable. In most people’s eyes it is unacceptable coming from a child, and Freddie’s dad particularly hates it, seeing it as the ultimate mark of disrespect: a thing he’s have been knocked into next week for, if he’d ever dared utter such words. But in moving away from Freddie when he began to swear, I was inadvertently handing control of the situation to him, he knew he could use the swearing to manipulate my response to him. Whereas, if I had completely ignored it I would have retained control, because he would have had nothing with which to wind me up or make me change my behaviour. He would have seen that swearing did not bring him what he wanted. It did not bring him anything at all — it was pointless.

Ignoring such behaviour can be much more difficult in front of other people, whether it’s family and friends or random strangers in a public place, as you can feel the weight of other people’s expectations that you will do something to reprimand and punish your child. Having been exposed only to traditional parenting methods most people tend to view ignoring as condoning: because they are not aware of the reasoning behind it.

I need to ignore them too — or else I am handing control of the situation over to others, allowing them to manipulate how I deal with my child. But other people and their expectations are not important here. What I need to focus on, both in public and in private, is my plan for encouraging acceptable behaviour, and in this case ignoring IS the best plan, for de-escalation, conflict reduction, and for teaching Freddie that swearing gets him nothing — literally nothing at all, not even a flicker of a reaction. And sometimes that means ignoring not just his behaviour, but other people’s too.

I was almost home before I realised that I’d had a fold-up shopping bag in my pocket the whole time. I could have just put the bowl in there and hung it over the handles of the wheelchair instead of walking along with it on the seat like some sort of ultra-bizarre child substitute.

Conclusion:

Always have milk,

Always have a plan,

Always have a shopping bag.

And, when it comes to parenting, always have the brass neck to stick to doing what you know is right for your child, rather than what other people think is right.

No Excuse.

I am incandescent with rage right now. You can probably see me glowing from space. I can hardly keep still to write this post. There it was again — that mouldy old chestnut: ‘In my day we didn’t have ADHD – it was just called being a little shit.’

This time it was a meme, shared by a Facebook friend.

Oh, for god’s sake, not this ignorant, toxic crap again.

And the first comment underneath said: ‘Agree 100%. I always say this. lol’.

To say I was angry is an understatement. I told the commenter they were ‘fairly ignorant’, only I may have spelled ‘fairly’ wrong — too few A,I, or R type letters, and too many U,C,K ones .I know — you’ll say I shouldn’t feed the trolls, I should just ignore it, not get involved, it’s only a meme, stay off social media if it upsets me. Well, I’m sorry but that is the wrong response.

It doesn’t matter whether these words (or other words to this effect) are said out loud or written down, or posted in a badly punctuated meme: that they are expressed publicly in any form enrages me and with good reason, and I will not leave them unchallenged. As long as no one argues with sentiments like this, those expressing them will imagine that others agree with them, that they are correct in what they say: and others hearing or reading their assertions may think that they have learned something true and that it is okay to say things like this. It isn’t.

Comments like this are not just untrue, they are damaging. They tear holes in the self-esteem and mental health of people living with ADHD, because you are basically telling them, and the whole world, that ADHD is a character defect, that it makes you a bad person — a ‘little shit’; that it’s a behavioural choice that you could change if you wanted to. It also suggests that your parents didn’t care enough to raise you properly.

BOLLOCKS. ABSOLUTE BOLLOCKS. TOXIC, IGNORANT, SMALL-MINDED BOLLOCKS.

ADHD is a neurodevelopmental condition. It’s believed to be genetic. It is not under the control of the person living with it, and it is not caused by their upbringing. ADHD is not about ‘naughty children’, a child with ADHD grows up to be an adult with ADHD.

And so there is no excuse for suggesting otherwise.

If you genuinely want to learn the truth about ADHD, one of the best things you can do is to follow some of the adult self-advocates active on social media. I follow a number on Twitter, including @blkgirllostkeys, @HowtoADHD @adhd_dan, @ADHDayInTheLife, and @Finnattentive. We can all learn a lot about the reality of ADHD from them.

The following post, written by me from a parent’s perspective, was originally published on the Firefly blog in October 2019.

ADHD Awareness: A Short History of Modern Excuses.

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, and
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.

About Us.

for old and new followers alike, here’s a reminder of what this blog is all about:

The name of this blog — ’47 Stripey Socks’ — was inspired by a visual representation of the Karyotype for Down’s Syndrome – the chromosomes look like pairs of stripy socks – but on the 21st chromosome there are three socks to the pair: people with Down’s Syndrome have 47 chromosomes instead of the usual 46. My youngest son has 47 chromosomes: he also has a wicked sense of mischief and a lively and inquisitive mind. I am defiantly happy with my life. No, that’s not a typo — I really do mean defiantly — because people don’t expect me to be happy.

Life has changed for the better in many ways since Freddie was born, and I would definitely number myself among the 79% of parents who report feeling MORE positive for having raised a child with Down’s Syndrome. So, if it’s martyrdom and misery you’re looking for, you’ve come to the wrong blog.

I didn’t expect to become a mum again at the age of forty: the champagne had been flowing pretty freely at my big 4-0 celebration – I’m not the first woman who’s had too much to drink and found herself pregnant as a result, and I won’t be the last, but I felt a proper berk getting caught out at an age when I really ought to have known how to look after myself better.
But, once the initial shock had dissipated I started to feel something else — a strange kind of … elation … I think you might call it, at being naturally and easily pregnant at an age when a woman’s fertility is supposed to be in sharp decline. It felt like a reprieve from the ageing process. Maybe, also, this was Mother Nature’s compensation for the recurrent miscarriages I’d suffered when I was younger. I had an instinctive feeling that everything would be all right, just as I’d had when expecting my two older children. This time I dared to trust my instinct, and I was determined to enjoy every minute of my pregnancy (just as soon as I’d stopped throwing up).
There’s always got to be at least one doomsayer, though, hasn’t there? Suddenly I was surrounded by them: the medical staff were pushing, sorry, advising me most strongly to have the screening tests I’d declined with my other two, and my mother was working herself up into a state of frantic anxiety. They were all saying the same thing in roundabout ways:
‘Don’t you know what can happen when women have babies at your age? Imagine if you had one of those Down’s Syndrome babies – Oh, whatever would you do?’
I already knew what I’d do – just bloody well get on with it, that’s what. I knew I’d love the baby as soon as I saw it, heck, I already loved it, and because of that I would cope with whatever came my way. But, I agreed to a nuchal scan just to reassure everyone that there was no need to worry (or, let’s be honest, to shut them up and get them off my back so I could get on with growing my baby in peace).
The result of the nuchal scan showed that there was a 1:12 ‘risk’ that the baby would have Down’s Syndrome. That wasn’t the news that I had been expecting to hear, I’d felt so confident that everything was fine.
My husband wasn’t with me, so the consultant offered to see us as a couple the next day, at the end of her antenatal clinic, to discuss our options. She was so earnest, so genuinely concerned for us and our family as she explained the possible medical implications of Down’s Syndrome, and the other implications, the ones that don’t appear in medical textbooks, such as poor quality of life, and marital breakdown. It was obvious that the only ‘option’ she considered viable was amniocentesis followed swiftly by termination if Down’s Syndrome was confirmed. I did not agree.
To be fair, once I’d made it clear that I wasn’t prepared to consider either of those, she accepted my decision with no further question and put a plan in place for my care; and the care I received from her team was excellent. The 20-week scan was performed by a consultant, who paid particular attention to baby’s heart. Thankfully the heart appeared normal, and no other ‘soft markers’ for Down’s were detected. Perhaps my instinct was right, after all, and everything WAS going to be just fine. My mum, who hadn’t spoken to me since the nuchal scan because she was dead-set against me going ahead with the pregnancy under such circumstances, started talking to me again.
Everything proceeded well until I was nearly 33 weeks. I seemed to be feeling less movement from baby, so I rang the midwife, who advised me to go to the hospital for monitoring. The hospital midwife who read the trace wasn’t altogether happy with it and asked me to come back the next day to be monitored again. I did, and this time they admitted me so that I could be monitored every four hours. Each time I was monitored the midwives and doctors said pretty much the same thing – the trace wasn’t dire, but it wasn’t quite right either – baby’s heart rate wasn’t rising as it should when he moved. After three days I was discharged with the stern proviso that I must attend the antenatal clinic on Friday, when a member of my consultant’s team would be able to review me.
On that Friday I was seen by the registrar, who looked over my notes then declared he needed to have a word with ‘the boss’ about me. He returned and said I’d have to be monitored yet again, but this time he would personally review the trace and make a judgement call. I mentally prepared myself to be hanging about for hours, but I was still attached to the machine when he appeared, now dressed in scrubs. A midwife had just reassured me that the trace didn’t look so bad and I would probably be allowed home, so I was rather surprised when, after looking at the reading in silence for some moments, the doctor said:
‘I’m sorry, but your baby needs to be born today.’
Because we had to wait for a neonatal bed to be available, the induction procedure wasn’t started until the Saturday evening, and Freddie was born at 12 minutes past midday on the Sunday, weighing 5lbs 10oz, and bawling loudly. It was 23rd November 2008, and the first snow of the year was falling outside.
He had such a tiny, sweet little face. I think we knew he had Down’s Syndrome straight away, even before the midwife said: ‘I’ve asked a nurse from neonatal to come and talk to you, because I have some concerns about your baby. Do you know what I’m going to say to you?’
Our first, most overwhelming feeling was one of protectiveness. ‘Different is OK in our family,’ we said. Our eldest child had been diagnosed with an autism spectrum condition at age 7; we had adjusted then and we would adjust now – we’d always been parents who had to do things a little differently.
Freddie spent the first six weeks of his life in hospital. In those first few days we learned that he had a minor ASD, which the doctors assured us would probably heal itself in time, and a condition called Transient Abnormal Myelopoesis. Our local hospital hadn’t much experience with this, so they took advice from Birmingham Children’s Hospital on how to manage it. After three weeks he contracted bronchiolitis and had to be moved to the paediatric ward. I couldn’t bear the thought of him being in a side room all by himself, but with other children at home I couldn’t stay by his side all the time. The family rallied round and we organised shifts so that there was always one of us with him. I think it was this that allowed the older members to see beyond the diagnosis and accept for the lively, responsive, and engaging little baby that he was. It didn’t take my mum long to fall in love with him.
‘I didn’t want you to have a baby with Down’s’, she said. ‘But he is SO lovely.’
On New Year’s Day 2009, the smiliest (and probably tallest) doctor I’ve ever come across gave me the best ever New Year gift – he told me I could finally take Freddie home.
And to this day he’s never been back as an in-patient!
The ASD did heal by itself, before he turned two. The TAM also resolved uneventfully and, touch wood, he has remained well ever since. Now he’s more-or-less as healthy as a typical child his age.
While it’s true to say that his physical and intellectual development are delayed, it is also true to say that they are consistently moving in the right direction. Like all children he has areas of strength and areas of struggle. One thing he’s particularly good at is reading. He’s a little bookworm.
Freddie is an inquisitive and observant child in many ways, and surprisingly quick on the uptake. He learns best by observing others, so we have to be really careful that anything we do or say in front of him is something we’d be happy for him to do or say … because he will. I try to turn this tendency to advantage when helping him to learn. He is a rather fey and unworldly child, just as I was at his age, content to live in his own world, populated by his favourite TV and book characters; it would be easy to assume that he isn’t taking in anything that I say to him. But if I listen, sooner or later I will hear my words repeated, nine times out of ten in appropriate (if somewhat random) context. If I occasionally step into a quiet side road with only a cursory glance instead of making my usual very deliberate stop to check for traffic, he will tug me back onto the pavement, saying ‘No mummy – look right, look left …’
Something else I did not expect in life was that I would Graduate from university at the age of Forty-eight, with a BA (Hons) First Class in Creative Writing. Becoming the mum of a child with Down’s Syndrome was not the end of the world: it was the start of a new one. Years down the line, I can honestly say that my initial instinct WAS right — everything is all right.

I do not pretend to be offering learned information or wise advice. I am not an expert on Down’s Syndrome, or anything else. I leave that to others wiser and more knowledgable than me.

This is only one woman’s story. As such it will not, can not, reflect everyone’s experience.

Create a free website or blog at WordPress.com.

Up ↑