I’m Cooky Howitt and I care for our 19yo ‘Pickle Bolognese’ Olivia (officially non-verbal but this is how she describes herself). I started writing Extreme Parenting last year: Olivia had developed a serious but mysterious health problem, and no-one seemed to be able to help us. She smashed things, stayed awake all night shouting, attacked people, and wouldn’t let anyone close to examine her. We called the police and emergency services out repeatedly. It went on for a whole year until we got it finally resolved – 2025 was far and away the worst year of my life.

I wrote purely for catharsis, but gained so much more: supportive readers and a wonderful community on Substack. A high point was being invited by to join her Parent Carers group. These people all write brilliantly about their own versions of extreme parenting in moving, unexpected and often uplifting ways, while not denying the difficulty of the day-to-day.

Meet the illustrious team! Each month, one of us hosts a discussion with all of us showing up in the comments for each other - and for you.

• Chris B

• Amy J Brown

• Sara Clime

• Anna De La Cruz

• Donna Giles

• Haley Haddow

• Bud Hager

• Mary Beth Kaplan

• Serena Menken

• Maria Messer

• Denise Servais

Make sure you go back and check out all of our previous posts: Last month, Mary Beth Kaplan hosted our discussion, Hopefully Ever After. This proved to be a really compelling topic and the discussion is still continuing!

Mary Beth speaks movingly of finding out about her son’s cancer diagnosis when he was only 12, the months and years of gruelling treatment, fear and hope - and how, now he’s been given the all-clear, they are not back in the carefree world that they used to know, but a new one, which needs navigating differently. It’s a must-read.

This started me thinking about the day we found out that Olivia had significant additional needs. Which began for us on the day that she was born. It’s almost funny now to think how wrong our expectations were.

Leave a comment

We thought it would be a breeze!

Most parent carers experience real shock when they receive their child’s diagnosis. Many are dealing with ongoing grief - my child will never be like other children, won’t go to college, get married, give us grandchildren. This is a natural response.

There’s a popular story by Emily Perl Kingsley that it’s like waking up in a different country to the one you expected. You get off the plane in Holland having expected Italy. And fair play to you if you have found this story helpful. Personally, I find it trite, irritating even.

I didn’t go through any of the above stages, and my husband didn’t either. We didn’t mind that our child was disabled, we embraced it. We had both worked with disabled children and adults previously in varying capacities. We were pros!

When I was pregnant with Olivia, after the standard 3 month ‘nuchal fold’ test I was told that I was high risk for my baby having Downs Syndrome. Many people would, with this piece of news, then decide to terminate a pregnancy, but we didn’t think twice, we 100% wanted her. I was happy to wake up in Holland. Bring me windmills and clogs!

The sum total that I ‘knew’ about children with Downs Syndrome at this point:
- they needed more care and support hitting milestones than average children
- but could eventually get a job in a supermarket
- they were always happy and liked music and hugging people

Our friends didn’t help, they said stuff like “Well if she does have DS, you two are the perfect parents for her to have”. This made us feel capable and even a bit smug 😊.

Then Olivia was born. And she did have Down’s Syndrome. And we were OK with this – more OK than the midwives who couldn’t get out of our house fast enough after they had delivered her. More OK than the junior doctor who officially informed Matthew by stuttering and handing him a leaflet.

She was an easy baby too, she hardly ever cried. Her brother had learned to talk ridiculously early, then bombarded us with incessant questions. Olivia just laughed in our faces. She DID need heart surgery, which is common with DS babies – she was born with 2 holes in her heart, and at 6 months went into the Evelina Children’s Hospital in London to get these repaired. It was a big operation but relatively commonplace and she sailed through it.

But then I stopped breastfeeding her and the gastric problems started. And the sleep problems followed on from these. Manageable until she started walking the week after her 2^nd birthday. Then the trouble REALLY started.

She was constantly on the move unless she was asleep – and she considered sleep optional. All times were the same to her – 4am? Time to play! She had no idea what was food – soil, sand, bits of concrete, bicycle tyres, string, dog poo – she tried it all. She loved water and would throw herself into any puddle, lake or pond that we went past (once into the deep end of a swimming pool). This combined with the 24/7 gastric issues led to us feeling exhausted and overwhelmed. Olivia remained utterly cheerful. She wasn’t talking but she boy had she learned to run. We became expert chasers, scanning each new situation for potential danger as we dashed around on constant damage limitation.

She discovered spinning around and did this when not running - out in public, on the train, during assembly at school. She shouted dinosaur noises and stole other children’s food off their plates. She hugged people, yes (I got one thing right!), but also loved grabbing their hair unexpectedly. She adored dogs and would poke them in the eyes – until one day she decided she was terrified of them and would try and kick them instead. She was always covered in food, just wiping and cleaning her was a full-time job in itself.

It was THEN that we realised what we had signed up for. This wasn’t Holland, we were on another planet entirely, maybe Venus with all the poisonous gases?

Further diagnoses followed – gluten intolerance/coeliac, ADHD, and finally autism/PDA. I honestly don’t remember getting any of them, I was too busy pulling Olivia out of traffic.

The sleep problems improved when we got on top of her diet, but they have never gone away and were at their worst last year when she was ill. And the gastric problems are always lurking too, the first sign of anything else wrong.

So the realisation of the true complexity of being an Extreme Parent only really sunk in when she was a few years old. And I think it was still quite shocking to me, even though by that point I’d lived with her for a few years. Because she kept coming up with new ways to surprise us, and most of them were unpleasant. By then of course we were totally in love with her, which helped a lot, but also chained us firmly in.

She has calmed down as she’s got older, and we have acclimatised, we’ve also now got the right support in place. But there are always more surprises round the corner. The biggest, nastiest surprise was waiting for us last year when she was 18 (you can read the full tale of woe on my Substack). Happily she is now fully recovered but I’ve carried on writing about her. Mainly because she’s deeply entertaining, but also because us Extreme Parents need to tell the world what we’re really dealing with, otherwise they would genuinely have no idea.

Leave a comment

Today’s Prompt for Discussion

1. Any thoughts welcome! Even half-formed ones

2. Reply to each other, someone else’s answer might be exactly what you needed to hear

3. Share, connect, and find each other

Every one of us is in a different situation. What works in my life might not work in yours. There are no right or wrong answers here. Just a community of caregivers who actually get it, showing up for each other.

Come and find us!

Please ❤️ LIKE the article to guide others to these resources.

Next month’s Caregiving as a Parent discussion will be on Friday 2nd October, hosted by .

Leave a comment

How I used to do the summer holidays when the kids were small (aka before I knew better):
1. Arrange a week or two in Devon/Cornwall with family (we always had to get an AirB&B in Devon as my aged dad couldn’t cope with Olivia 24/7) .
2. Spend days gridlocked on the M25/M4/M5 trying to get to/away from Devon at the same time as everyone else, occasionally having to pull onto the hard shoulder to change a nappy or calm a meltdown.
3. Arrange some kind of special needs holiday club a couple of days/mornings a month. They were always fully booked, we sometimes had to stay with her, and there was a cost.
4. Arrange a few blessed days when her lovely carer would take her out. We would then both work frantically.
5. (For a very few years only) Book a family holiday somewhere new for a week – usually disastrous, so hard to travel with Olivia, so hard to get her to sleep at all, plus she never stopped moving. We would come back ruined. We had some super-tolerant friends who had a house in France driveable from the Eurotunnel where we were actually able to relax – she was still a pickle, but nobody cared – the relief! We eventually stopped booking other holidays and just stayed with them every year, bless their (neurodivergent, of course) hearts.
6. Go to the doctor for anti-anxiety medication at the start of September.

I didn’t actually notice that I always needed the meds in September, my GP pointed it out to me the third time.

It’s all about the planning..

Come with me on my thrilling planning journey. There are 7 weeks of summer holidays this year. That’s 7 weeks to fill with outings, activities, trips, and socialising for our girl - making sure that she spends time with bigger groups than just us, has a few different carers and a range of destinations and things to do. All this has to be arranged and co-ordinated by yours truly.

I have wrestled with many iterations of a colour-coded holiday spreadsheet. Looking at it does help to calm the nerves. We have something/someone most days, but a lot of these are only a few hours, or half a day.

..and the money

It’s funded mostly by us too. Around Olivia’s timetable, Matthew and I have to try and fit in as much paid work as possible. We use our social services Direct Payments to cover Olivia’s carers’ hourly pay (they can’t be used for anything else). Then her monthly disability PIP payments cover her usual living expenses – which they don’t, quite. All other payments for activities, entrance fees, travel, zoos, aquariums, gardens, swimming, petrol and food along the way have to be met by us. Normal family expenses, you’d initially think. And fair enough if your child can amuse themselves for short periods, be left at a holiday club or go out with friends. And if they’re actually a child - Olivia is 19. If neither of us can work we don’t earn, so it’s an expensive time of year even if we don’t actually go away anywhere.

But this year we actually are taking a short Cornish ‘holiday’ in early August to stay with Matthew’s cousin’s lovely family. Olivia is very excited about seeing them, also she adores the surf. It’s wonderful that we’re so much closer to them now, so the travel will be a piece of cake. I might even be able to relax a bit with a few more pairs of eyes on her. But it will not be a rest, with dogs, people and new (in)accessible places to navigate around.

Real holidays

We don’t go on ‘real’ holidays - you know, ones where you rest, explore a new place, try out food, do activities etc. I’m mostly used to this but it’s still quite hard when you’re out in a group, as I was the other night, and people talk about holidays, and inevitably ask ‘Where are you going this year?’ We are location-trapped in a small circle with our house at the epicentre. We do have two long weekends planned without Olivia, one in August (Cornwall glamping - exciting) and one in September (France – even more exciting), but we can’t leave her for longer than about 4 days, and even that takes SUCH complex arranging. Here we are on our last proper holiday -Sitges in 2004 - don’t we look young and relaxed?

2026 Summer Diary

Week 1

Yesterday Olivia asked for SWIMMING, so we rocked up to the pool to find a huge queue. Olivia doesn’t do queues, and anyway this one wasn’t moving. I had to tempt her back to the car by offering her her packed lunch at 10.30am (think of waving a vodka bottle in front of Father Jack), and we regrouped and set off for the beach.

After spending a good 45 minutes stuck behind the largest, slowest bit of agricultural machinery ever invented (with Olivia shouting ‘To the beach!’ and pointing to the empty opposite side of the road which she obviously thought I should be driving down), we arrived to find the beach covered in seaweed and the tide nearly all the way up. She quickly got into her new favourite place sitting by the breakwater, mesmerised by the swooshing waves. Luckily it was quite calm so the peril was low.

She did come out into the sea proper and do a bit of swimming with me at one point (which was initially lovely, although she kept trying to go out deeper so I was mainly herding), but mostly she was glued to the breakwater. I was pretty cold after an hour or so, but of COURSE she was not going to come out. I stood in the shallows coaxing, beseeching, and bribing. But we know don’t we dear readers that none of this works. In her own time – exactly 3 and a half hours later – she came strolling up the beach. She let me change her but then took a shine to a random family and sat down with them and wouldn’t budge. I was practically crying by this point but was forced to wait it out again, and after about 15 minutes of them totally ignoring her, she decided maybe I was the better option after all (especially as I’d caved and offered McDonald’s).

And you know, this wasn’t a bad day, she stayed safe and had a great time – looking around, I evaluated that she was probably having the most fun out of everyone on that beach. I on the other hand was almost certainly having the least fun. I was chilly, hungry, dying for a wee and (worst of all) HAD ONLY HAD ONE COFFEE. Plus was on constant high alert in case she drowned. My hypervigilance around Olivia has cranked up several notches since her illness and refuses to respond to the more reasonable side of my brain, which kept suggesting that at least I sat down to watch her. I didn’t.

Relentless optimism

Looking on the bright side, as I am wont to do, this could (just COULD) be my last summer holiday to fully organise, as she may be moving into supported living next summer. That’s a huge thing that I’ll cover in the future as it unfolds. One thing I do know is that it won’t be straightforward.

But the main reason to try and enjoy this summer is that last year was flat out miserable, she was extremely unwell (her main surgery was in early July), so we didn’t really have a summer, she wasn’t up to leaving the house, and the whole thing passed by in a blur. This year we have the best support package we’ve had so far with ‘Olivia’s army’, family nearer, and a few overnights of respite booked, all of which will help hugely. And beautiful scenery/beaches to escape to easily, so we’re kind of on holiday already. Our house actually used to be an AirBnB too.

Only 6 weeks to go Extreme Parenters, no problem!

We are numpties though. We left it parked on the road outside with the key in it. The thieves probably tried a few car doors along the row and lucked out with ours. There’s been no trace of it since we last used it, so I suspect they changed the plates almost immediately.

In our defence, we are waiting for a disabled bay to be painted outside. It can be hard to find a free residents’ permit space during university term-time. But we have double yellows immediately outside our front door which don’t block anything, so we requested a disabled bay when we moved in 15 months ago. I won’t bore you with the saga but it was yet another disability fight that you don’t expect/need. They finally agreed 4 months ago, but we are still waiting for them to actually come and paint it. Can’t believe this will take longer than maybe an hour max? Tempted to have a go at it myself with some Tippex, how hard can it be?

Without a disabled bay, and with eagle-eyed traffic wardens circling like birds of prey, dropping Olivia off can be a bit stressful. She has no concept of road safety, other than finding our reactions to her standing in the road funny. We have to stop directly outside on the double yellows to get her out right next to the front door. Then we can display our Blue Badge, which gives us up to 3 hours. We always try to move the car straight away, but if we’re on our own, we can’t then leave her unsupervised while we go off and drive around looking for a parking space. So sometimes the car gets left there and then it’s easy to forget to move it later. We’ve collected a few tickets this way. Outrageous - ticketing a Blue Badged vehicle parked outside their own front door who’s not blocking anyone and who has a disabled bay pending. But you know, that’s the law, so OK.

The day before the theft, I drove Olivia back from college, found a space outside that was literally an inch longer than the car, parked it at an angle (I’m shit at parallel parking) but she was kicking off wanting to get indoors, so I left it like that while I got her out. Then Matthew kindly went out to tidy up my parking, but managed to leave the key behind him in the car in the process. Because he hadn’t actually been driving the car, he didn’t think about locking it up. And because I was in the house, I didn’t think about it either. And if we’d had the blooming disabled bay, this wouldn’t have happened. Let’s blame the council and not our own idiocy!

One other bad thing? Olivia’s buggy was in the boot. So we’re without that now too.

But on the good side, it’s a Motability vehicle. So we eventually were given a courtesy car (a Mini Countryman, I love it! Useless if we had the buggy, but of course we don’t so it’s fun to drive a smaller car for a change), and we’re able to choose another vehicle without any penalty. Motability have totally written the old car off. Also it was a Dacia Jogger – roomy, but desperately unsexy. We’re going to try and find something a bit more exciting, although there aren’t many affordable options with the big boot space needed for the buggy. Which we have discovered is very luckily covered on our house contents insurance.

Car/insurance talk is dull innit, apologies. But then so important if you have a disability. We were without the car (and buggy, which we’re still without) for a whole long hot weekend and it was really tricky. The car was also stolen on the Friday of the bank holiday weekend, so nothing happened until the next Tuesday. Thank goodness for our eldest George and his old rustbucket trusty chariot.

Water danger

Unless you’ve been living under a rock, you will have noticed that it was half-term last week here in the UK, also that the weather was unseasonably lovely. I was looking forward to taking Olivia to the beach, her favourite place apart from the golden arches, and last year she was too ill to go.

This year it’s a whole different story. After her gynae surgery, she’s a whole new woman. Well, less of a woman actually – minus an infected fallopian tube – but a different person. Full of beans! Newly confident! And this brings trouble. She has discovered the joy of waves breaking over her head, and of rushing water all around her. Turns out this is not comfortable viewing for a doting parent or carer.

Add to this her propensity to get ‘stuck’, or be unable to stop doing something fun (we can all relate), and last week we experienced many hours of tension as well as boredom - strange bedfellows and not really the family frolics I’d anticipated.

So come with me, dear reader, on a tour of our beautiful but surprisingly deadly local beaches:

Coryton: She discovered that if she sat swooshing water against the breakwater, she would get waves from two directions simultaneously. Riveting but not hugely dangerous, although I worried slightly about the submerged rocks appearing as the tide went out which she was oblivious to, but she was in there for over 3 hours and got quite sunburned. The rocks actually helped us - the retreating tide left her trapped in front of them, and her dad pulled her out while I waved a milkshake for bribery. Also she hated the seaweed here but refused to move the few yards across to the vast stretch of beach that didn’t have it. And she was dying on that hill so we left her to it.

Dawlish Warren: Out with lovely K at her favourite beach, she waded into the surf, enjoying the tide coming in, but going ‘slightly deeper than I was comfortable with’ (K). 5 hours later, she still hadn’t budged and the sea was getting rougher. Her dad and brother were on the way as reinforcements when she suddenly decided to come out, probably because the tide was right up and there was practically no beach left. She was happy and unscathed, just very hungry. K just had sunburned feet, her nerves always seem pretty good but it can’t have been relaxing.

Fingal Bridge: Small beach at nice quiet river on Dartmoor. Sat down in it fully clothed, then stripped off to underwear/nappy in front of surprised families. But no actual peril, so we’re taking this one as a win. K was on duty again (she’s on a much deserved holiday this week, I do hope she comes back).

Budleigh Salterton: This will be FINE we thought, she doesn’t like the pebbles underfoot so never goes right in. Wrong! Straight away threw herself into the mouth of the river. Her dad had to wade in and scoop her out before she hit the rapids and was swept out to sea. She wasn’t a bit grateful.

Still Budleigh: Next she found a lovely calm rockpool – whew, we thought - but then the tide started coming in and she wouldn’t get out. The small pool gradually turned into a pond, then a lake with a worryingly deep bit in the centre - of course she thought this was brilliant. Finally, the promise of an ice-cream lured her out with what felt like seconds to spare before the tide completely engulfed the whole area. Whole thing took around 4 hours.

Must admit to feeling a little ‘beached out’ now. Not sorry that it’s raining this week. Have decided that she needs two people with her for all water-based excursions, which will eat into our budget, but be less stressful for everyone. We’ll only take her into the water where there are lifeguards on duty too. Really she needs her own personal lifeguard. Any Substack volunteers?

But then I think back to last year, when a terrified girl wouldn’t leave her room and was attacking us and destroying books and furniture, trying to tell us that she was in terrible pain. This is nothing in comparison, in fact it’s joyous. Well, with a lifeguard it would be anyway.

Next time: No idea, I’m going to stop promising stuff because I so often get derailed. Consider it a lucky dip.

The Three Little Pigs

Me: Once upon a time, there were..
Both: one… two… THREE little piggies
Olivia: Dittlepeeg! *snort* (very accurate pig noise)
Me: The time had come for them to leave their home and make their way in the Big Wide World. Mummy Pig said “Be careful my dears, and watch out for the..”
O: BIG BAD WOLF! (snorts, giggles)
Kiss! (holds her hand up to my mouth for a kiss, she likes the buzzy feeling)

Me: The 3 Little Pigs went down the road. They needed houses to live in. The first little pig went whistling down the road.
Both: Dee de dee, dee de dee (neither of us can whistle)
Me: Then he found a pile of
O: SPAGHETTI BOLOGNESE!
Me: No, he didn’t, he found a pile of straw next to the road. So he wove the straw, twisted it, plaited it, thatched a roof. Then he had a lovely house made of straw. And he went inside and he shut the door.
Both: Dee de dee, dee de dee [*THUMP*: door closing sound effect made by hitting bed headboard]. *SNORT*
(Olivia collapses into giggles)

Me: The second little pig, she went skipping down the road
Both: Tra la la, tra la la
Me: Then she found a lovely pile of..
O: SPAGHETTI BOLOGNESE!
Me: No, she didn’t. Oh OK then. She found a big pile of spaghetti bolognese next to the road. So she got the spaghetti and stuck it in the ground, then wove the other spaghetti though it, then she got the bolognese and slapped it all over the outside, squelch, squelch.
O: Squelch! Spaghetti bolognese! Squelch! (Laughing so much she falls off the bed. Sits on floor roaring with laughter.)

Small pause to pull her together, get her back up etc.

Me: Then she had a lovely house of spaghetti bolognese! And she went inside and she shut the door.
Both: Tra la la, tra la la, [SQUELCH] *SNORT*
O: (collapses into mirth again): Kiss! (hand over my face)
O: Spaghetti bolognese!
O: Pickle!
Me: Yes you ARE a Pickle
O: (giggling, totally overcome with her own comedic genius) Pickle bolognese!

Me: Right, where were we? So then the third little pig went marching down the road
O: (quietly to herself) Pickle bolognese
Me: Are you listening? The THIRD little pig went marching down the road
Both: march, march, march, march
O: [THUMP – door noise] *SNORT*
Me: Not yet! He has to build the house before he can go into it. So then he found a big pile of
O: SPAGHETTI BOLOGNESE!
Me: No, that was the second pig! This pig found a pile of bricks next to the road.
O: (stubbornly to herself) Bricks bolognese
Me: (ignoring her) So he mixed up some mortar, and put a line of bricks down – chink, chink, chink – then spread the mortar on top – spread, spread – then another line of bricks.. until he had built a beautiful wall. He carried on - 2 walls… 3 walls… 4 walls. Then he put a roof on top with a chimney, and a lovely front door with a nice glass bit at the top, and a doorbell*. And then he went inside and he shut the door.
Both: march, march, march, march {THUMP} *SNORT*

Me: So there they were, all happy in their 3 little houses. But not for long! Because who came along?
O: BIG BAD WOLF! (snorts, giggles). Kiss! (hand over my face)
Me: It was time for lunch, and he was..
O: HUNGRY. Bolognese.
Me: Not bolognese, wolves eat little piggies - on toast! He went up to the house made of straw, and he knocked on the door.
Both: *THUMP, THUMP, THUMP* on the headboard.
Me - BBW: (In a terrible voice) Little pig, little pig, let me come in!
Me - 1^st LP (Squeaky): Not by the hair on my chinny-chin-chin
O: Chin bolognese! (grabs her chin, then my chin, then collapses in laughter again)
Me - BBW: Then I’ll HUFF, and I’ll PUFF, and I’ll BLOW YOUR HOUSE DOWN!
Me: (puffing and blowing) And he huffed, and he puffed, and he huffed, and he puffed.. and he blew down the house of straw. And the first little pig ran as fast as he could to his sister’s house, shouting ‘The wolf is coming! The wolf is coming!’
O: BlowYourHouseDown! (all one word, very fast)

Leaving you on this cliffhanger as you’re probably exhausted by now and yearning for a big glass of wine. If you feel anything like me.

*All this house detail is relevant to the plot I promise

She offers random words/phrases, occasionally relevant, but she can’t do normal conversation, back and forth, it’s too complicated for her to follow. Officially she has ‘minimally verbal autism’. But despite this, she loves language and wordplay. I find this really extraordinary. Before being Olivia’s mum, I would never have realised that non-verbal people can love language too. Don’t underestimate someone because they don’t talk just like you.

We read a wonderful article recently about a highly intelligent, non-verbal autistic man who has just had his first novel published. What’s really fascinating is that he shouts out words or short phrases in an extremely similar way to Olivia, despite the vast difference in IQ between them. It’s an incredible story: https://www.theguardian.com/books/2026/mar/28/i-was-in-the-pit-of-despair-non-speaking-autistic-novelist-woody-brown-on-his-journey-from-write-off-to-writer

Olivia can say YES but uses it liberally and inaccurately in response to anything that sounds vaguely positive. Would you like peas? Did you go to the beach today? Did you have a good day at college? All of these get a YES, then we discover that they didn’t go to the beach, or she throws the peas back at us.

She never says NO, even though it’s within her ability. I wonder why? I would suspect that she doesn’t want to offend, but instead she ignores you, pushes you away or spits, which are all arguably a lot ruder. I think it has to be connected to her PDA in some way, but don’t understand exactly how. NO just makes her anxious.

Her speech has exploded in the last few months, since recovering from her long illness. She was pretty much silent for the whole of last year when she was unwell, and now she’s playing catch-up. For someone who doesn’t really speak, she has a whole lot to say. And most of it is irrepressibly silly.

Learn to speak Olivia

Spaghetti bolognese – still no.1 of random shout-outs, because it nearly always gets a laugh. We really should stop encouraging her.
Pickle – to describe herself, with glee, especially if she’s being a bit naughty.
Cheeky monkey – ditto, this is one of phrases that she reserves for her daddy, who is her main wordplay pal. They also do toodel-oop, a super happy expression (Matthew says he thinks of it as ‘tous les loups’, all the wolves!)
McDonald’s – every time she does something even slightly good, in the hope that we’ll take her there .And we sometimes do, because we’re stone-cold suckers.
Mummy – if she’s out with an enabler and wants to go home. She never says it to my face, sadly.
Catchy Bollo! – energetic ball game played with her lovely student carer, E. Olivia suddenly came out with this brilliant name for it.
Crips, chips, noodles and (new this Easter, along with ‘chocolate egg’) roast potatoes – all the best carbs.
More – food usually, but also more stones to throw in, more Catchy Bollo, more story.
Mr Wonka! – new entry since watching Charlie and the Chocolate Factory with K the other week. Unfortunately, it sounds more like ‘Silly wanker!’ which is not what we ideally want her shouting at strangers.

Recently, she’s started to combine these into longer word-scrambles, which nearly always end in ‘bolognese’. It’s like the word bolognese has started to unlock the doors of the rest of her vocabulary.
Pickle cheeky monkey bolognese! - things could really not be going any better
Night-night bolognese – casually as I tucked her in last night
Bing-bong bolognese – once when the doorbell rang. I so wish she’d say it again.

She’ll have a crack at repeating a lot of things after us if they sound fun, the best one is Peter Piper Picked A Peck of Pickled Peppers, which her dad trained her to say during the Covid lockdown. Here we are trying to get her to say it:

Backwards and forwards language development

Something that I don’t understand, but I know it can happen with autistic children, is that she used to have a much bigger vocabulary, peaking when she was about 5 or 6. At that time, she could also read at least 50 words by sight. She can’t read any words now at all except her own name. You hear of this reversal of knowledge happening with more able ASD children at around age 2 or 3, which is why some parents have blamed the MMR vaccine for this, which is coincidentally administered around the same time.

Olivia’s college have just helped us to purchase a text-to-speech ipad. This has symbols and pictures on it that she presses and it will speak them out loud. The possibilities are exciting, although she’s not showing much interest in it at the moment. Apparently she uses it at college to select colours of beads to thread: I mean, it’s a start.

I’ve already posted about one of her friends at college who has programmed ‘Spaghetti bolognese’ and ‘Pickle’ into his ipad so that he can ‘say’ them to Olivia. Or about her – she pulled his hair last week and he used ‘Pickle’ plus a hair-pulling gesture to report her to the teacher. Language can also be used against you Olivia!

Next time: (hopefully) a report from the SEND disco. Everyone should be made to go to one of these at least once in their life, they are joyous.

I need to choose my words carefully, as you’ll be relieved to hear that I’ve promised Matthew that I will keep Olivia’s dignity intact (ie not specifically mention poo/bottoms), let’s see if I can manage it shall we?*

Our eldest George messaged us the week before last, he had been extremely unwell with a tummy bug. All my mummy instincts kicked in, and I drove up there, scooped him up, brought him home and made him soup. He recuperated nicely and went back to uni a few days later.

The very next day his sister went down with it. We have a double problem with Olivia: dealing with the illness, then dealing with her Pathological Demand Avoidance around allowing us to look after/treat her. Usually the PDA is more of a challenge than the original issue.

You’ve probably heard of PDA, it’s been known about since the 1970s, but has come to prominence more recently. I read a deeply unhelpful Substack article about it the other day essentially saying that it’s all made up. A lot of recent press says stuff like this. But PDA is real, and I should bloody know. It is a profile of autism in which certain everyday demands, normal or mildly irritating to you and me, make the recipient literally panic. They go into ‘fight, flight or freeze’ mode and respond accordingly. To me, cleaning my teeth is a routine annoyance: to Olivia, it’s a life-or-death demand which she has to fight with every fibre of her being. Because she is unable to look after herself in the most basic of ways, each time we try to do something to/for her, she is being thrust into anxiety-laden territory. Genuine PDA essentially has extreme anxiety at its core.

The way to work through PDA is to work with it. If you try to force Olivia to do anything, if you shout at her, grab her, you’ve lost. And the next time you want her to co-operate, there’s even less chance that she will. If you can be understanding about the current source of pressure, it loses some of its power over her. Telling someone with PDA that they’re being silly does the exact opposite: it adds more pressure to an already boiling pot.

Olivia needs a huge amount of personal space in order to feel safe. In her mind, anyone coming close is probably going to try and do something unwelcome to her. In fairness, this is kind of true. We touch her mainly to wash/brush her hair (ouch), put creams on her (yuk), wipe her (ugh), adjust her clothes (why?). So as soon as we approach, she immediately goes into fight mode, and we can be lucky to get away without a push or a smack. She also spits, tics and makes dinosaur noises at us, which are involuntary signs of panic, not her trying to be a little bugger (it did take a while to realise this).

Getting close for affection is therefore complicated. If I want to give her a kiss, I have to approach with my arms behind my back (see, I’m not going to do anything to you!) and my lips puckered, saying ‘Kiss’ so that she understands. Even then often she’s not up for it and I get pushed away. Physical affection is given/received purely on her terms. I’ve got used to this, and it’s really not a problem, I know that she loves me! On the plus side, you do feel very specially chosen if she approaches you for a lean-in.

Back to Norovirus. You can see now how the above problem is worse if she needs an urgent change. The feeling of urgency (from us), plus the additional soreness/discomfort (so extra pressure from herself) add together to magnify the demand. In total sods law, the more urgently she needs changing, the less likely she is to let us do it.

When she was little, we just grabbed her, sat on her and did whatever needed doing. I now think that was probably a mistake, as it’s set her up to mistrust us as an adult. I’m not castigating my past self, we just did what we thought we had to do at the time. But now we can’t get near her nails, teeth, hair or (sometimes) bottom, and my regular readers know that this is an ongoing constant concern.

This is why, when she had her gynae problems last year, they escalated so badly before being treated. Nobody could even feel her tummy, let alone get her into a scanner. It was easier to dismiss her problems as ‘behavioural’ without forcing an examination.

Anyway, back to today, Day 4 of what on paper seems very like Norovirus. Keeping to my word, I’m not going to describe these 4 long days/nights in detail, but if you have any imagination at all, you will be able to get there. Let’s add in that I am not a naturally patient person, who very much values their sleep, and is pretty squeamish about bodily fluids (although obviously much much better than I used to be), and you’ll get the overall picture.

She is now on the mend but still resisting being changed, and not able to eat much. We’re at the plain rice, noodle soup stage. Last night was our first full sleep since it kicked off. She is off college sick and I am yet again cancelling clients. I’ve barely been outside for days. My house smells.

If this post reads like I have lost my mojo, yes indeed this is true. It will return for next time and we can have a laugh together at her new ipad words. But this week, things are tough in Extreme Parenting land, as they sometimes just are. And that’s nobody’s fault, least of all Olivia’s, who has been remarkably stoical throughout this horrible bug. Much more stoical than her mother.

*I think I managed it?

Not daunted, I optimistically decided ‘let’s do fun indoor activities!’ So yesterday I spent the best part of 2 hours making this house of straw. I hated every single second. But we are desperate to get Olivia’s nails cut, and the theory is that she needs to do lots of playing around with and using her hands, in order to get them ‘desensitised’, so that we can at some point get near her nails. After this, we can move onto her feet. Her college and OT have come up with this sensible-sounding plan. But it’s such a long game. A very long and extremely tedious game. Which I’m pretty sure we’re ultimately going to lose (but isn’t that parenting in a nutshell?).

So I’ve put together a ‘tuff tray’, a mini sensory version of ‘The 3 Little Pigs’, Olivia’s favourite story. I told her college I was totally up for this, after all I was once a primary school teacher, so this was going to be easy, right?

I bought 3 pigs and a wolf finger puppets (not as cheap as you’d think), sourced a big 2^nd-hand plastic tray (25 quid! No wonder nurseries are on the financial ropes), went for a walk and picked up some sticks (surprisingly easy, although not sure what passers-by thought of me), and bought a box of plain drinking straws. I paid £3 for a bag of 2^nd hand Lego bricks from Facebook Marketplace, and drove 40 minutes each way to pick it up.

In our version of the story, the wolf falls into a pan of boiling spaghetti bolognese (of course). I managed to find model plastic spaghetti bologneses on Amazon, and a tiny saucepan.

I put all my hard-gotten gains into the tray and put it in front of my daughter - and she ignored the lot, apart from trying to eat the fake bolognese. Then I moved it onto the sideboard, where it sat taunting me for over a month. But I have a meeting at her college next week to talk about my progress, so I needed to up the ante.

I have no crafty bone in my body. In this day and age I would probably be diagnosed as dyspraxic. My fine motor skills are woeful, and have been blunted further in recent years by arthritis in my wrists. If you want to upset me, give me a button to sew on.

Yet there I found myself, painstakingly gluing straws onto some card. Then they fell off. Then I used Sellotape, which worked better but looked rubbish. Then I wanted to give up, but had spent 40 minutes of my one wild and precious life on it, so felt compelled to plough on. I finally got the walls done, but the roof had me completely stumped. Eventually, with what I’m sure you’ll agree is a stroke of genius, I folded another piece of card in half, sellotaped straws onto it and – ta da! A wonky, tragic-looking house of straw.

Reader, Olivia loved it. She got the fake bolognese and put it into the roof. Then she pretended to blow it down. Then she put a pig inside it and pretended to blow it down. Then she put the wolf finger puppet on and knocked the house down with him. Then she put the wolf into the house of Lego bricks with his arse on the bolognese. Then she went off-piste and pretended to cook the bolognese in a frying pan. The whole time she was shouting ‘HAPPY BIRTHDAY WOLF BOLOGNESE’ and laughing herself silly.

Then abruptly the game was over, and she started to pull the walls off my lovingly crafted house of straw. It had been wonderful and joyful. It had lasted exactly 12 glorious minutes. I’m actually taking this as a win. But I’m not fecking repeating it.

Maybe doing stuff with her feet will be easier? I’m currently attempting to buy a used foot spa on FB Marketplace, and it’s a minefield. Two people have agreed to sell me theirs for a tenner, then ghosted me. Why are they trying to sell something if they don’t actually want to get rid of it? Is this just some weird thing about foot spas? More likely it’s a weird thing about Facebook.

Will we ever get near her nails? Will I ever make another tuff tray of anything?

And most importantly, does anyone reading this know how to make a house of sticks?

I’ve not posted for a while because things are going pretty well, and that doesn’t make for exciting reading, or frankly provide a compulsion for me to get things off my chest. Olivia is so much better, generally very happy and sleeping 12 hours a night. See, you just don’t care, do you? However we are still:

a. Dealing with gynae pain which bizarrely happens a few days AFTER each period.

b. Mystified by this.

For a few days each month she’s just not right, uncomfortable and doesn’t want to go outside. Last week, we finally had a follow-up phone call from the Consultant who did her surgery (7 months later!). It didn’t really help to clear up anything as he is also mystified, but it did reassure us that we had not been forgotten.

And of course, we are constantly doing normal Extreme Parenting:

1. Trying and failing to cut her nails/hair.

2. Trying to stop her sitting in moving water.

3. Trying to get her to get out of the sea/river/pool once she’s in it.

4. Trying to get her IN to the bath [this one makes no sense because water, but I guess it’s just not exciting enough].

Feeling better means that Olivia is making huge progress in many areas, particularly speech. There are new words every day. But it’s the old favourites that are getting a real hammering. SPAGHETTI BOLOGNESE is still in the no.1 spot. Now being used as a suffix, as in ‘Silly bolognese’, ‘Sleepy bolognese’, ‘Bing bong bolognese’ (to the doorbell). Also enjoying varying the tone - whispering it, then shouting it.

Her friend at college, non-verbal, has ‘Spaghetti bolognese’ and ‘Pickle’ programmed into his communication ipad, and when he sees Olivia, he presses them so it can speak them aloud for him. Then they both crack up. If he forgets, she taps him on the shoulder to remind him.

Language is ace, isn’t it? Even if you don’t have much of it.

Banned from the pool

We frequently take Olivia swimming, because it hasn’t stopped raining here for weeks and it’s a good indoor sensory activity. Plus it’s opposite Burger King, which we can use as leverage when we want her to get out. K took Olivia off there as usual last week and all went well. Until it was time to leave - Olivia wasn’t having any of it. K is used to this and settled down to wait but it went on.. and on. Olivia loves to sit near the pool side, swirling the water backwards and forwards with her hands, and the usual bribery was cutting no ice this time.

Message from K: “I even ate a crisp in front of her!”

The pool staff were initially very understanding, but after a while explained that they needed to clear the pool for swimming lessons. Olivia had other ideas. The staff warned other clients then put the very loud fire alarm on, hoping that this would put a rocket under her. Not even this worked. K had been messaging us, at this point she rang and asked for back-up. Matthew went down there and, after a while and on her own timetable, Olivia finally decided to get up. She had been in there around 3 hours.

On the way out, the receptionist told K that unfortunately Olivia would not be allowed back in the future, for ‘safety reasons’. Basically, she needs to be able to leave if there’s a fire, so it’s not safe for her to be in the pool.

Initially we took this on the chin, but on reflection have decided it’s not on. Should no-one with a learning disability use a swimming pool in case they won’t get out? Should they not be allowed in any buildings that have fire alarms? What about at college, they have whole buildings full of kids like Olivia there, how do they manage it?

Unfortunately for the pool, one of Matthew’s ongoing clients is Disability Rights UK. He was able to discover that venues are required to provide Personal Emergency Evacuation Plans (PEEPs) tailored to disabled users. Basically, it’s not acceptable for them to deny Olivia access to the pool without even discussing a PEEP first.

Government guidance: “When writing escape plans that include disabled people, there is sometimes a tendency to overplay the safety issue to the detriment of the independence and dignity of disabled people.”

BOOM.

Also, if there WAS actually a fire, Olivia would absolutely shift it – she understands if we are giving her an urgent command. And totally realised this time that we weren’t.

Will we win this battle against our municipal overlords? Watch this space! And don’t say I don’t bring you the most nailbiting content.

Next time: I’m only going to publish when there’s something to share from now on, rather than my previous weekly updates. Unless things go pear-shaped again, in which case I’ll be back here, doing regular writing therapy as previously.

31^st December is Olivia’s birthday, so New Year’s Eve has not been the same for us since 2006. Instead of being about midnight countdowns, drinking fizz and dancing, it has become about giving our girl the best birthday possible, then collapsing.

But this time we thought.. maybe we could do both? Why miss out? And you know what, we kind of succeeded! Of course it was messy. And of course it all caught up with us massively the next day.

Olivia has been on cracking form all Christmas. And because she’s been happy, and our new house has a big space for entertaining, we’ve been able to fill the place with friends and family. Last year was quite frankly a shitshow, Olivia was desperately unwell and we were clueless and frantic with worry. Boxing Day was the first time we called the police out. But that contrast made the festivities even sweeter this year. I finally got to have the Christmas that I’ve seen on TV and been trying to create each year since having kids, but having it repeatedly thwarted by, you know, being a parent.

New Year’s Eve 2025

Little Olivia had disco parties or pool parties but, as she’s got older, these things have become increasingly overwhelming for her. Throw in uncertain health, and there’s just no point in arranging things that she won’t enjoy, or even be able to show up for.

This year we decided to keep it simple and it really worked. In the morning we were joined by K and her daughter at the swimming pool, followed by Burger King, handily situated opposite. Olivia did get ‘stuck’ in the pool. She doesn’t do much swimming, mostly sits near the side swooshing the water backwards and forwards with her hands, utterly mesmerised. We just had to wait it out and after 2 hours she decided she was hungry and it was time to go. 2 hours isn’t bad, once we were stuck at our local outdoor pool in Kent for over 6 hours and got very sunburned, with me totally losing it at one point and shouting at Olivia which had no effect whatsoever on her, but did make every single other person in the pool turn and glare at me, they were definitely on her side.

BK was a huge success, Olivia particularly loved making faces at K’s daughter – we were worried she might be jealous, but she just embraced her as a new friend. It helped that she’s as lovely as her mum. Olivia, like many people with Down’s Syndrome, has a perceptive radar for the best people.

After this we went home to decompress, then dear S came over for birthday cake. This also made Olivia very happy, she adores S. She put on a pretty dress and thoroughly enjoyed being the centre of attention. S gave her a parrot which sings Happy Birthday (Olivia’s favourite song, 365 days of the year) and repeats whatever you say, this was a huge hit. Olivia shouted SPAGHETTI BOLOGNESE at it repeatedly, that joke is showing no sign of getting old.

The rest of the day was spent playing on her new Nintendo Switch. She is surprisingly AMAZING at MarioKart, her brother used to give her turns years back, and she obviously remembers how to play. She also enjoys jumping off cliffs and into lakes in Zelda Breath of the Wild, where you can die unlimited times – so funny! In the evening, she chose a takeaway (Vietnamese, she loves a noodle).

To party, or to parent?

If you’ve read me before, you’re probably aware that we have a running problem with Olivia’s toenails, in that she won’t let us near to cut them. Fingernails too, but these often break off naturally. The toenails are pretty horrific currently, with some curling back into her feet.

We used to give her a sedative before bed which enabled us to cut them in the night, but this is no longer strong enough. However, tonight we thought that what with an exciting day and the swimming tiring her out, it might just work. So after a long Story In Mummy Bed (PIGS twice, followed by PIRATES), she drank the spiked Kool Aid and nodded off.

10pm
We proceeded to jump-start celebrating the New Year by going in strongly with cocktails, then moving onto champagne, then roughing it with prosecco.

Midnight
We toasted Olivia’s health, our new house, each other, and new beginnings in 2026.

12.30am
First attempt on the nails. Olivia immediately drew up her feet, opened her eyes and snarled at us. We retreated. S sensibly went home around now. We unsensibly got our silent disco headphones out.

1.15am
2nd useless nail attempt. She was not impressed by the flashing headphones that we had forgotten to take off. We hastily removed them and managed to persuade her out of our bed and into hers. Should we go to bed, or should we have another drink and try again later? What do YOU think we chose?

2am
Matthew managed to cut ONE of her big toenails, but she woke up halfway through so it wasn’t pretty. We ended up holding her foot down while he sawed through the rest. Done though! She went straight back to sleep. We were elated! Or perhaps we were just a teeny bit elated anyway.

3am
I managed to cut ONE of her long little fingernails using clippers, very badly, straight across at the top, maybe knocking about a millimetre off. She didn’t wake but angrily pulled her hand away. We gave up and went to bed.

6am
I woke up and optimistically decided to make a final attempt by myself - totally useless. I lurched out feeling queasy and necked some paracetamol.

9.20am
Olivia woke up. She needed a full change and a bath. Her dad was resolutely asleep. I cleaned her up then noticed that the landing and bathroom floors needed urgent mopping. Then I had to get her downstairs and give her breakfast. I actually thought I was going to cry I felt so terrible.

Matthew and I spent the rest of the day swapping over with each other so that the other one could sleep. What a slog. That will teach us. Or will it? Hmm.

Next week
We’re about to give her a break from the hormone patches so it could be back to misery memoir next time, instead of nearly-pensioners behaving badly. Olivia is back at college, and I’m hoping to be able to do some actual work.

I’ll leave you with our Pictures of the Week, taken by K. I think we’re going to have to avoid the beach until the weather warms up.

Yes I am about to write about ketamine. How did it come to this? But first,

This week

This time last year we were on our knees. We have come a LONG way. Olivia has been gynae-unwell again this week, a blip out of nowhere for the last 5 days, but is hanging in there and made it to college yesterday for her Christmas lunch. Maybe she will never be ‘better’ but she is doing great compared to a few months ago. Writing this Substack has given me valuable perspective, as well as put me in touch with some wonderful people. It’s been a highlight of my year and honestly has kept me sane. Turns out I didn’t need counselling or anti-anxiety medication – I just needed to write it all out.

I’m going to amalgamate my stats starting in September 2024, when Olivia properly began to get sick. Slightly scared of what I’ll find! Deep breath, here goes:

Stats totals Sept 2024 – Dec 2025

Calls to GP: 117
Calls to 111: 29
Calls to 999: 5
Police visits to house: 4
Number of agencies involved – 17 (not individuals, that’s in the hundreds)
Trips to A&E: 4
General anaesthetics: 3
Total number of phone calls made to all health professionals: c300 (conservative estimate based on phone records)

Number of college days missed by Olivia: 52%
Number of work days missed: me – c95%, Matthew - c50%
My annual income at end of: June 2024 – 45K (usual)
June 2025 – 9K, but my expenses were 6k = 3k profit
June-December 2025: £900
Carer’s allowance claimed: June-Dec 2025 (£82 per week) = £1698

2025 nights (I didn’t record them in 2024 so the grand total is much higher)
No sleep at all/sleep after 5am: 54
Nights awake until 2am-5am: 52

Diary, July/August 2025

July 15^th: Since the operation [to remove a previously infected fallopian tube and untwist everything else], Olivia has been a delight and full of cuddles. She’s not wanted anyone near her for most of the last year, so we’re loving it. She’s recuperating, very tired, sleeping up to 14 hours a night. We’ve been signed off by the LD Health team. Hope not too optimistically.

July 21^st: Arggh, suddenly, after a particularly vigorous swing session at the park (could this really have done something?) she has relapsed. Shouting out in pain, awake all night, the whole shebang. I rang the ward, but because over 2 weeks has elapsed since her surgery, we have to be re-referred by our GP. We think maybe her coil has slipped? Is this possible?

July 22^nd: We took her to A&E as none of us had slept for 48 hours and we were desperate. Her consultant surgeon came down to have a look at her. She wouldn’t let him touch her (obviously) but he observed that she was moving around well, so the coil was probably still in place. He suggested that she might be ovulating, which could be exacerbating some post-surgical pain. We were sent away.

August 6^th: Lots has happened. After a further fortnight of distress, we insisted that Olivia was taken back into surgery to be checked out. Ovulation pains do not last 3 weeks! Gynae were reluctant but bowed to the combined pressure from us, our GP and the LD Health team (who we are now back on with). Thank you, our heroes.

The same procedure to knock her out was followed as previously, we had a different gynae consultant but the same specialist anaesthetist. This time they went straight for the ketamine injection and an unconscious girl was then wheeled into theatre. We cut her nails and hair again before they took over (NB We’ve not been able to get near them since, she looks like a yeti).

Ketamine chaos

This time she was knocked out for less than an hour. The Consultant confirmed that actually, yes, the coil HAD slipped and would have been painful. Olivia wasn’t tolerating it, so they removed it. Once again we have been proved correct in insisting she get checked out for a physical cause.

She was then wheeled into Recovery and started to wake up. Recovery is a small ward with eight beds, two of which were already occupied. I feel very sorry for those two women.

So it turned out that this time, Olivia had not been knocked out for long enough for her initial ketamine injection to wear off. She essentially woke up tripping her tits off. And she did NOT like it. As her brother George said later, “She woke up in a K-hole!”

First she sat up and just bellowed. Then she went absolutely wild, thrashing about. Four nurses, myself, her dad and the anaesthetist were stationed around the bed, fielding a flailing limb each, putting pillows under her to try and stop her hurting herself, which she was then hurling away. Equipment went flying, a few folk got a stray kick in the face.

And this went on for HOURS. She had left theatre around 3pm, we were still in recovery listening to her shouting at 7pm. It was exhausting. We could see the drug gradually wearing off, but as she got more conscious, she got more cross. Finally, she seemed to slightly lose heart and we managed to move her into her buggy. Matthew decided to push her home (a half hour walk) – we didn’t think she was safe to put into the car. The anaesthetist got changed into her civvies and walked alongside them – she was a lovely woman who obviously felt terrible about the situation. George walked to meet them from home for some extra support.

Olivia didn’t sleep at all that night, she was still coming down, but by the following morning she was calm and the next night she slept for 16 hours.

Sept/Oct 2025

I have written about this time ‘live’ in my earlier blogs so won’t go over it again here. September is featured in The Unbearable Heaviness of Paperwork. Check this and the rest out if you’re a glutton for punishment.

So this means that we are up to date! Thank you so much for coming along for the ride. I’ll continue Extreme Parenting in the new year, but I really hope that I don’t have too much gynae misery to regale you with, and we can be a bit more light-hearted and less intense.

I’m done with looking back now. See you in 2026, which frankly HAS to be better than 2025, which has been the worst year of my life no contest.

Finally, let’s balance this with some pluses:

• Moved into beautiful new house in March 2025

• Launched new business, Flourish Career Coaching (website live Jan 2026 www.helpmeflourish.co.uk) with brilliant business partner

• Had cracking 60^th birthday party

• Started this Substack and got lovely messages from wonderful readers, some of whom have children/gynae issues similar to Olivia. I love all my readers, but you most of all.

Happy Christmas Friends of Extreme Parenting! You really are the best.

*Warning: this article talks about lady bits. If you can’t cope with that, maybe have a word with yourself.

Welcome new subscribers! The first part of this sorry tale is here: Welcome to Extreme Parenting. It is chronological, going through my diary from the last year. If you’ve been reading me regularly since the beginning, give yourself a pat on the back for endurance. Today you will be rewarded because we’re finally about to get some answers.

It looks like my 2024/5 diary entries should be caught up to the present date by Christmas, which is nice and neat. I’d like to say I’d planned things that way, but I don’t plan any of this, including when I publish anything. Like all extreme parents, I just grab my chances when I have a moment.

This week

Picked Olivia up from college yesterday and she was barefoot, dressed in someone else’s t-shirt. They said “We took her to the beach and she just waded into the sea and sat down in the surf fully dressed! She was laughing and shouting ‘Pickle!’” That’s our girl. She’s not done that at college before though, I think it shows she’s growing in confidence. Which is.. good??

DRUMROLL… Olivia is currently having her first OK period for over a year. What a breakthrough! Last week’s wobble turned into her first period for 3 months, and although she’s been a bit grumpy around it, it’s not out of the ordinary. Nothing at all like her previous extreme reactions. The hormone patches really do seem to be saving the day (Oh God last time I said this was in July 2025 – see diary below - and it all fell apart, so really I am tempting fate here). But we’ve had some fun outings, including rubbing mud on our face at Budleigh, and her sleep is OK.

We only have to crack the toenails, and we might be able to relax for Christmas. This feels minor after everything else we’ve been through. It’s still a problem though. We’re talking to an OT at her college about desensitizing her hands and feet, but this could take months. Right now her nails are an inch long and curling back into her toes. Except for the big toe nails which stick out like razors, and she does love to poke me with them during ‘Story in Mummy bed’. (See I’ve watched Finding Nemo 5475 times for a breakdown of this thrilling nightly ritual).

Diary, July 2025

July 2025 stats:
General anaesthetics: 1
Gynae surgery: 1
Calls to GP: 6
Days worked: ½ (Carer’s Allowance not yet materialised, poor Matthew dealing with all Olivia’s stuff as well as earning 100% of our income)
Olivia college days: 4

5^th July: What an extraordinary couple of days we’ve had. We are exhausted but finally properly hopeful. Things have completely turned around in an unexpected direction.

Olivia went into hospital on 3^rd July to have a general anaesthetic, gynae examination, laparoscopy (camera down through tummy button), and Mirena coil inserted. The gynae team stressed that they thought Olivia’s problems were hormonal, so they wouldn’t find anything. The coil would regulate her periods and hopefully calm the violent outbursts.

This is where the NHS massively came into its own. We’d waited months for this procedure, and it went like clockwork:

12pm: gave Olivia some initial sedation at home. Hidden in milk, to make it easier to get her into the car/to the hospital (all the recent trips to A&E have made her very hospital averse).

1pm: met in the hospital car park with puppets and toys by our old friend Nurse K from the Learning Disability hospital nursing team (part of our fantastic Community LD team). Olivia delighted to see her. Wheeled O into the hospital in her buggy.

1.10pm: met in hospital foyer by a lovely specialist anaesthetist, experienced in working with LD adults. Taken directly to a private room on the gynae ward.

1.20pm: Plan A: Olivia’s brother George dropped off a McDonald’s milkshake for the team to hide her first lot of anaesthetic meds in. Didn’t work, she just spat it out.

1.40pm: Plan B: a team of 6 medics filed into the room, surrounded Olivia and held her down, the anaesthetist then injected her with ketamine. She sat forward abruptly looking surprised then passed out instantly. They were then able to get a cannula into her hand to give her the usual anaesthetics.

2pm: Olivia wheeled into theatre. Matthew and I allowed in to cut her nails and hair. Hard to cut hair when she’s lying on it but an obliging medic held her head up. Still it’s not exactly coiffured.

2.10pm: we’re sent away for a cup of tea, told to come back in an hour.

2.15pm: the SEND dentist arrives in theatre to give Olivia’s teeth a thorough check-over and clean (she won’t let us clean them, another ongoing problem).

2.20pm: gynae procedures start.

4.30pm: still not heard from them, we suspect they’ve found something.

5.00pm: back on the ward waiting in her empty room. What is going on?

5.30pm: the surgeon came in with his laptop and showed us some alarming pictures from the laparoscopy. At some point in the past (almost certainly when she first kicked off back in Kent about 18 months ago), Olivia had contracted an infected fallopian tube, which had swelled up and caused other increasing problems in her abdomen because it was not treated. The laparoscopy showed the (no longer infected) tube to still be very swollen, she also had a twisted uterus, one ovary in the wrong position, and general pelvic inflammation which had caused adhesions affecting her womb with knock-on effects to her bowel. The Consultant said that she would have been in constant pain, but it would be much worse around her period as menstrual blood build-up would exacerbate the inflammation.

They also discovered that Olivia has a very small gap in her hymen, so menstrual blood would be unable to escape properly, causing even more build-up and exacerbating the pain.

No wonder she had been so angry! And thank God we insisted on the laparoscopy, otherwise none of this would have been discovered. It doesn’t bear thinking about. She’s been living with this FOR 18 MONTHS. And trying to tell us about it.

The surgeon removed the infected fallopian tube, cleared the adhesions, untwisted everything, performed a hymenectomy to make her hymen gap larger (never knew this was a thing) and inserted a Mirena coil. He reported ‘her pelvis is nice and clean now’.

2 days later: From as quickly as the very next morning back at home, Olivia has been a changed person. Sore from the surgery, yes, but smiley, happy and actually letting us near her. She is actively sourcing cuddles from everyone instead of keeping us all at arms’ length.

She’s fixed! It’s a miracle!*

She was able to go back to college just in time for the end of term.

*Next time: I spoke too soon, no she isn’t and it isn’t.

This week things are not so good with our girl’s health. Not horrific, up-all-night book-destroying meltdown terrible. But not great either. She’s agitated, ticcing, up until midnight/1am. She’s digging in and refusing to have baths, or to go outside, or to come home from the playground. Or - slightly more worrying - refusing to leave the shoreline while the tide comes in. Here it is, coming in..

This blissful Zen photo was taken by K an hour before the water had climbed up to Olivia’s waist - as darkness fell. Poor K was begging her to get up but being totally blanked (Olivia is a blanking master). After about an hour, when the water had crept up to her tummy and filled her dungarees, Olivia suddenly hiked herself up. K sloshed her back to the car in the dark, engineered a total clothes change and pumped the heating up to full. Off to McDonald’s no harm done! Except to poor K’s nerves.

I talked to our GP on Monday and she suggested taking Olivia’s hormone patch off now for a week, a couple of weeks earlier than planned, as she thinks that her body is telling us that it is ready for a period, then we can start a new patch after it’s over, and calm everything down again. This sounds sensible, so we’re buckling up for a rough few days. Olivia hasn’t had a period for about 3 months so it’s time.

Still not had a follow-up appointment from the hospital Gynae team. Not massively hopeful that they have any more of an idea than we do, but as I said to them on our last call, ‘You’re the gynaecologists, so could you perhaps come up with some kind of a theory?’

Diary – April/May/June 2025

April – June stats:
Calls to 999: 3 - twice in one day in May
Police visits to house: 2
Calls to 111: 3 - whateva, bless them they’re useless
Trips to A&E: 1
Calls to (lovely, new) GP: 25 - yes, TWENTY FIVE
Days worked: 0
Carers Allowance claimed: From 10^th June (£82 a week)

June 2024: Just when we thought things couldn’t get harder, these few months have seen a ramping up of Olivia’s symptoms. The Gynae Consultant started her on the pill at the end of February, telling us to give it to her back-to-back in order to avoid having a period. This worked fine for a month or so, and although she wasn’t exactly happy she was able to (mainly) go to college and get out and about. But then she started ‘spotting’, small amounts of blood, alongside an escalation of the violent behaviour that now always comes with her period. We were told to persevere, that the pill can take several weeks to work and it should settle down, but she kept gradually getting worse.

This was our longest stretch yet of hardly any sleep, lasting for several weeks, with Olivia at home pretty much 24/7. Our poor girl broke things, she attacked both of us and one of her lovely carers, L, who she adores. Tbh, this last month has been a bit of a blur - my faithful recording system has broken down - but has involved 3 calls to 999, with the police remaining in the house for a few hours on one occasion for our protection (see previous post about this). I feel that my grasp on sanity is slipping. I usually pride myself on being reasonably together, but the lack of sleep and the worry are relentless. I am also furious. Who with? Not sure – the gynae team? Partly. But mainly it seems to just be displaced anger at our situation. I’ll cover this properly in a future post as it’s something many SEND parents feel. I must stress that we are NOT angry at our children, it’s the system that we have to fight that is so exhausting and infuriating.

Poorly. Knackered.

Eventually, our GP advised us to stop the pill, give it a break for a week – which she warned us would be rough as a full period would certainly arrive – but then we could start administering it again and Olivia should improve.

We have been slightly cheered by FINALLY getting Olivia’s general anaesthetic date through - 3^rd July. This will involve a scan, an examination and the insertion of the Mirena coil. They have not yet responded to our request to also do a laparoscopy, but they haven’t said no either. This is needed in order to potentially diagnose endometriosis.

Later: Pausing the pill has worked for now. The week of her period was the one when we got the police out, so it was predictably awful, but we are out the other side now, and counting the days until she goes into hospital.

I was going to write about her procedure and results today but it’s quite a story, so I’ll save it to do it full justice next time.

I just want to say that one of the worst things about all this for me personally is that I HATE not being able to work. Hate it! I’m a career coach and my job is a vocation and a real passion. I’ve set up a new business since moving to Devon with a brilliant local colleague L who I love working with. But I can’t give it proper time or energy this summer. I also hate having to claim Carer’s Allowance. I have actually been eligible for it for a while but was hoping each month to be able to earn enough instead. It turned out to be surprisingly difficult to prove that I needed the allowance: I had to send bank statements, then answer a load of questions about my income and expenses. Then my claim didn’t go through and I had to ring them back a couple of weeks later to answer yet further questions. All for less per week than I earn in one hour with a client! (NB And I won’t actually receive any money from them until the end of September).

Next week: Gynae investigations shock discovery

Larking about in our new home

This week

Olivia is probably not quite as settled but she’s still happy, having a blast at college and enjoying outings with her enablers. She tried a new music group last week with L, and K took her swimming and made her laugh hysterically just by splashing her. It’s wonderful to hear her chattering away too: ‘Spaghetti bolognese!’ ‘Pickle pie!’ ‘Cheeky monkey!’ We’re getting a lot of kisses and cuddles. If you praise her for something she immediately says ‘McDonalds’ in the hope that she’s earned the ultimate reward.

Ah McDonald’s. Faceless multinational corporation selling food of dubious provenance? Tick. Terrible for the environment? Tick. Absolute life-savers for Extreme Parents? Tick tick tick. Luckily Olivia only eats their fries and milkshakes, not the burgers, but I still dread to think how much money we’ve given them over the last 18 years. It turns out that you can buy happiness, and for that reason I consider it a bargain. It’s practically providing us with a public service.

Diary Feb/March 2025

Feb/March stats:
Calls to GP: 16
Calls to LD Health Team: 10
Calls to 111: 2 (I’ve pretty much given up on them)
Calls to 999: 2
Days worked: 5.5

The gynae department referral came through in January. They have offered us a phone call on 20th February. Nearly 5 months after this hell has started, we’re finally going to be with the right team. We just have to get through the 6 weeks until the appointment.

Occupational Therapy support: The LD Health team have sent us an OT to try and help us manage Olivia’s behaviour around her bad patches. She is absolutely lovely, and it’s very cathartic to be able to offload everything onto one understanding person. She lays out a useful ‘traffic light’ system, highlighting what we can do when Olivia is in ‘amber’ to stop her tipping into ‘red’. Nothing new, but very useful, especially when you’ve lost your mind at 3am and handy strategies are unlikely to be front and centre.

February 16^th: Olivia is in the middle of yet another awful patch, including 7 nights with no or very little sleep. Her cycle is currently 5-6 weeks long, with around two of these weeks unimaginable, two miserable but bearable, then one when she’s fairly happy. We are still just hanging in there for our imminent call with the gynae team.

20^th February: we have just spoken to our first Gynae Consultant! She suggested that Olivia starts on the pill. She thinks that the problems are almost certainly hormonal and that this should help even out our girl’s cycle, no matter what’s causing it. Usually the pill is taken for 3 weeks, then stopped for a week to allow a period to occur. The doctor suggested taking it back-to-back so that there’s no break time. We feel strongly that Olivia needs examining, but they are reluctant to do this until we have at least tried the pill. We are supposed to try it for 3 months, which seems interminable to us right now. It’s more how can we get through the next 3 weeks/days/hours?

28^th Feb: Olivia has started on the pill, after some problems getting the right one prescribed via the hospital. She has at least cheered up a bit after her last bout.

5^th March: House move!

We are ecstatic to have moved into our beautiful now home, out of the dark into the light, out of the valley onto the mountain top. We are now 10 minutes’ walk from town, and 2 minutes 18 seconds walk from my dearest friend S. It feels like a miracle to have got here. No slugs! No mice! No mould! George came home to help with the move, luckily Olivia was well enough to go to respite care that night.

For the first time Olivia has her own playroom, which she absolutely loves, and which gives us some much-needed space from her. Check it OUT:

20^th March: No time to get complacent. Despite not actually getting her period, Olivia behaved exactly as if it was still there. A week of agitation, two weeks of violence/no sleep, a week of quiet misery, then OK again.

This one was the worst yet, as she took her clothes off, then smashed a glass lamp in her bedroom, treading on the shards. Her foot was bleeding but she wouldn’t let us in the door and was screaming. We suddenly heard a huge crash. She had pulled down her curtain rail and was waving it around. We were out of our depth. I rang 999.

The police were a bit out of their depth too, but it was reassuring to have them here, and they were so sympathetic. They stayed until we could hear Olivia stop marauding and start sobbing, she then let us in to change her. Her foot is not too bad luckily. We managed to get some lorazepam into her and it seemed to help this time (it doesn’t always any more). The police left us with their direct numbers.

Our GP and the LD Health team are both going to get in touch with the gynae team at the hospital to say that the pill is not having the desired effect and we need an urgent follow-up appointment. Sod waiting another 2 months.

7^th April: Just out of our first in-person Gynae appt which Olivia was too poorly to leave the house for, being in the middle of yet another awful attack. I attended on my own but was met in the waiting room by the wonderful hospital LD nurses, waving puppets! They were most disappointed not to have Olivia to play with, but one of them came into the appointment with me for solidarity, and she was absolutely fantastic. The Consultant (a different one from the one we had spoken to previously) wanted us to stick it out with the pill for longer. I was a bit useless sitting there crying and Nurse J sprang to my defence, “Haven’t this family suffered enough? Their girl needs a proper investigation.” Honestly I could have kissed her. Official verdict: Olivia will have a general anaesthetic in order to be checked out/scanned, but also to have a Mirena Coil inserted, which has a good record at regulating gynae issues generally.

I asked if she could potentially have endometriosis, fibroids or cysts, but the Consultant said these were unlikely at Olivia’s age, and that anyway, if they did an ultrasound scan, it would indicate if further investigations were warranted.

The next week

As soon as I got home, I researched endometriosis, and it was very clear that you can’t get it diagnosed without a laparoscopy. An ultrasound simply isn’t up to the job. So I went back to our GP and the LD Health team, and asked them to back me up to push for a laparoscopy. They agreed that while Olivia was out cold, she might as well get every investigation going. We all wrote letters and eventually the Gynae team agreed, although we didn’t hear from them for several weeks.

And May & June were to prove our biggest challenge yet.

Next time
Gynae surgery shock discovery

I can sense that today’s 2024 diary is going to be a hard one to get off my chest, but that’s why I’m writing this. Thank you so much for reading, the catharsis is real.

This week

The hormone patches appear to be working! You heard it here first, Team EP. She had a bit of a wobble last week, but since they have been properly stuck on, her period has been delayed. She’s happy, chatty and the word ‘Spaghetti Bolognese’ is hilarious and being used to answer most questions, or just shouted out randomly, then she weeps with laughter. She’s had some successful outings, including a beautiful walk on Dartmoor with us in her big buggy. It was very hard to drag her away from Haytor Quarry, we had to mention the magic McD word to get her out. If she can throw stones into water, she’s hard to shift. Note to Dartmoor: your ‘accessible’ walks are not really that accessible. We managed purely down to (Matthew’s) man power. And he was knackered when we got home.

Toenails

Getting Olivia’s toe and fingernails (and hair) cut is the bane of our bloody life. She hasn’t ever let us near them, but when she was little it was a simpler time: Matthew sat on her and I cut the nails. She shrieked blue murder but then, done! Crisps, all forgotten. But as she’s got bigger this has become increasingly nonviable. We got CAHMS involved, and they had a lovely plan about getting her accustomed to a nail file one swipe at a time. You can imagine how effective THAT was. (I’m not knocking CAHMS, they have been brilliant on other occasions). Finally our GP suggested slipping something into her milk at bedtime so that she slept more soundly, then cutting her nails in the night, and this has kind of worked for many years. But it’s not foolproof - we have to get her to drink the milk, which she often won’t do, then wait until she’s deeply asleep. Sometimes this never happens, usually it happens around 2am so we are forced to keep ourselves awake by drinking wine and listening to music. A tough life! So we can only try it at the weekends.

The last 2 weekends have ended in toenail failure, so the pressure was on this Saturday. She drank the milk like a lamb (yay!), and fell asleep around 9pm (also yay!) And in her own bed (triple yay!). We tiptoed in at 11pm, 12pm and 1am before finally giving up. Each time she just kicked her feet away, she actually opened her eyes at one point. She has obviously built up a tolerance to lorazepam during her illness. We may have to wait until her tolerance drops – but how long will her toenails be then? She can hardly get her trainers on now.

Anyway it was lovely to drink wine and listen to music together, but we were very tired after Dartmoor, and the whole thing was pointless, and yesterday I was slightly hungover. Meh.

Diary, December 2024

This was a very difficult time, so I’m steeling myself. Reminder: Olivia is in hospital on a gastro ward, and is about to have a general anaesthetic so that they can scan her bowel.

10th December, 2024 - Scan day

They found anaesthetising Olivia tricky. She wouldn’t breathe into the mask, refused to drink any pre-op sedatives, and you can’t get a canula near her. The anaesthetist tried other things, but when she fought, he swiftly injected her with ketamine, which made her immediately unconscious, then they were able to put in a canula and knock her out properly. We then rushed in to cut her hair and toenails (honestly, it’s a result already as far as I’m concerned). She was then wheeled away into theatre for a bowel CT scan. She looked very small on the trolley, my baby girl.

Results: The scan showed no problems with her bowel other than that she was very constipated (we knew, hospital does that to you). It did show one ovary slightly bigger than the other but they have stressed that this is normal and doesn’t warrant further investigation. Concluding diagnosis: IBS exacerbated by the pressure of not having a school place/ being in a new home and out of routine.

Now back home (with her terrible mullet haircut. We thought we had done it so well too). Feeling cautiously hopeful.

[NB This diagnosis turned out to be totally wrong. Her period had ended while in hospital, she remained calm up until Christmas, but we still hadn’t put 2 and 2 together.]

Christmas 2024

Dec/Jan stats:
Calls to 111: 4
Calls to 999: 1
Calls to GP: 16
Days worked: 9

20^th December: My sister, my gorgeous nephew (14) and his dad are coming for our first Devon Christmas. But the Grottage has resident rodents! I can hear them scuttling around inside the cobb walls. Matthew has put down poison, which should be starting to work. Olivia still doesn’t have a school, so we are taking her out every day, mostly to watch her on wet park swings, or push her around the dripping woods. It has been nearly ten weeks since the College offered her a place and STILL DCC haven’t ratified it. She is calm but clearly lonely, bored and not 100% well. The rain just keeps on coming - all the clothes in our cupboards smell of damp.

Christmas Day We’ve had a really lovely day with the family, Olivia quite happy most of the time and loved her light-up jumper [NB the photo at the top of EP blog of the pair of us at Coryton Cove was taken today], wonderful to have George home from university larking around with his sister. Also she worships her cousin T, who is great with her. The only problem is that my sister’s family, who are sleeping on the dining room floor, reported mice running over them in the night. And not just once or twice! What terrible hosts we are, have put down more poison/traps.

Day after Boxing Day: Awful awful night. Olivia suddenly very unhappy , didn’t want to go out and lots of ticcing. She wouldn’t go to sleep and Matthew stayed up with her. I woke around 2am to the sound of a huge crash, then him shouting ‘Help me! Help me!’ He was sitting on top of Olivia on the sitting room floor, his face was bleeding and she was trying to pull his hair out with her other hand. He had been taking her back to bed, and she just threw herself at him, scratching and kicking. Thank God for my sister’s partner A who rushed to the rescue, grabbing a duvet which the two men then used to hold her down. But then what to do? I rang 999, explained the situation, and the police were on their way.

After a few minutes, Matthew felt Olivia relax slightly, he then immediately asked her ‘Bubbles?’ knowing that a bath usually helped calm her. Amazingly she said ‘yes’ and he managed to get her upstairs into some warm water in Hitler’s delightful bathroom. He sat outside on the stairs and I’ve never seen him look so miserable. She’s never hurt him like this before, and he’s never restrained her before (toenails excepted). He is devastated.

The police arrived while she was still in the bath. Apart from being about 12 (everyone professional looks ridiculously young to me now) they were great. My sister has worked with police around mental health and she was impressed with their training. They said that although Mathew had been assaulted, of course they wouldn’t be pressing charges. They also said that we had done the right thing calling them, as nobody should feel unsafe in their own home. They praised Matthew for de-escalating the situation. They offered to have a word with Olivia, but that would achieve nothing and just frighten her. They stayed for a while until it was clear that her current outburst was over. Then paramedics arrived, confirmed that taking her to hospital would be pointless, checked our supply of sedatives, and left.

Ringing the police because you’re frightened of your child

This would turn out to be the first 999 call out of four. Each time an absolute last resort when we were concerned for our safety or hers. Each time paramedics were also sent who arrived much later, they always concluded that they couldn’t take her to hospital as she would refuse to get in the ambulance. And anyway, which department should she go to? From previous visits, we had little confidence in a trip to A&E giving us anything but more stress.

999 Call 2: March 2025 – pulled down the curtain rail in her bedroom and brandished it. Smashed the bedside lamp and trod on the shards in her bare feet.
999 Call 3: April 2025 – smashed up everything left in her room, including tearing up toys and books. This time the police stayed for several hours as they could hear her breaking things upstairs and didn’t think we were safe. One of them gave us his personal number when they left in case of future emergencies.
999 Call 4: June 2025 – she was furious that I had locked myself into my bedroom and tried to break the door down.

Previously, the idea of calling the police on our own daughter would have been unthinkable. How has it come to this? Is her learning disability making people discount her? Everyone individually who we have been in contact with has been lovely, but they all seem powerless to offer any real help.

The penny drops

By the new year, a small inkling had grown to engulf my mind. Before Christmas, my friend S sent me an article about PMDD and endometriosis, and it seemed to fit Olivia’s symptoms. Around the same time, a local LD Manager mentioned that Olivia’s cyclical reactions seemed to match her own long-term gynae issues. I went back and reviewed the records. OF COURSE. Olivia’s behaviour and sleep clearly went off the rails the weeks before, during (especially) and after her period. This had been clouded by the fact that most of her periods were delayed, which was another symptom in itself. Take that Inspector Clouseau!

So back to our GP/LD Health team to get an urgent referral to Gynae.

Also some much-needed good news, my dad’s house buyers decided to still go ahead – albeit at a much-reduced price - meaning that we were just able to afford to buy the old pub, by the skin of our teeth. Bye bye Grottage from March! And we had Olivia starting college 3 days a week in January to look forward to.

Next week: Gynae surgery

Daddy’s girl

This week

It was a good innings (28 days good, a record) but we’re off again into Meltdownland. At the moment she is sleeping so it’s manageable. Still no sign of her period so, on the advice of our GP, we have started her on the hormone patches. We have to stick them on her back without her realising, but for someone with a Learning Disability, her reflexes are rapid. She hates being touched and becomes suspicious if you start hovering nearby. The first patch I got half on, but it was scrunched up. And she was furious! I managed to get the next one on OK – entertaining scenes as she tried desperately to remove it but couldn’t quite reach. But then she came downstairs yesterday minus it and looking pretty smug. Have just managed to get another one onto her this morning. Let’s see how long it lasts.

Behaviour is on the slide with a few minor(ish) incidents. Firstly, on Monday, enabler K took her to iBounce trampoline park. This is one of her favourite places but it is very over-stimulating and she usually just sits in one place, bouncing a foam ball against the wall. This time she totally dug in, got ‘stuck’ and refused to leave. I’d foreseen this and paid for the subsequent session too in case things overran, but even after this one she was still firmly refusing to budge. Even offering the magic McDonald’s didn’t do it, and when she got too close, K got her hair yanked. One of the iBounce helpers said ‘Oo she really pulled out a load of your extensions’. K replied ‘I don’t have extensions, that was my real hair!’ Eventually K rang me for back-up, but by the time I arrived they had made it out and Olivia was happy to get into my car.

The rest of this interminable half-term second week we have had to play by ear. Yesterday was Matthew’s birthday and Olivia was booked into respite so we could go out for dinner. But she point blank refused to leave the house – always a sign that she’s not well. We hastily changed plans to a takeaway at ours, determined to make the best of it. But Olivia wasn’t happy. She didn’t like us laughing and talking, and stomped around the table with her ipad at top volume, playing some delightful video of a kid throwing a screaming tantrum on YouTube. I thought I’d disabled YouTube! It gives her ideas. What kind of sicko parents video their child having a tantrum and set it to public view? There are thousands up on there.

Over the next hour her tics increased (she snorts and blows raspberries compulsively), not a good sign. I tried to take her up to bed but this made her cross and she started throwing things at me (only a soft toy and a cushion luckily). Eventually we all sat quietly ignoring her and we could tell things were starting to improve as she suddenly switched from tantrums to watching ‘Happy birthday’ videos instead. Her dad was then able to joke around with her, and we got her into bed around 11pm. Not exactly the birthday celebration that we’d hoped for, and another example of Extreme Parenting messing up the best laid plans.

Daddy’s girl

I just have to say something about Matthew. Olivia loves him so much. He manages to diffuse her grumpiness by making her laugh. They have a number of in-jokes, most based around wordplay. I love that wordplay is so much fun for a girl with so little speech. She calls him ‘Daddy Pig’ and she is proudly his ‘Pickle pie’ and ‘Cheeky monkey’. Their chats are brilliant: listening to her trying to say ‘Peter Piper picks a peck of pickled peppers’ is comedy gold.

It takes two people full-time to parent a child like Olivia. Can we stop right now and bow down to all those single parents with SEND kids - if this is you, you are a total ninja. Day to day we swap over constantly, ensuring that we’re roughly equally dividing bath time, cooking, chores, and taking Olivia out. When she’s ill, or awake at 3am, the one that’s feeling the strongest takes over and sends the other one to bed.

Matthew gets less tired/ill/stressed than I do, and is physically stronger. He copes with the sleep deprivation better than me (I struggle with sleep on a good night, whereas he’s like Homer Simpson – starts snoring before his head has actually hit the pillow). Because of this, he is much better in the nights/early mornings and generally he is calmer than I am, and better at soothing Olivia. I do the planning, talk to agencies, ring 111. He manages the LA finances (a nightmare). If he goes away, I feel anxious because Olivia is physically stronger than me, whereas he is stronger than her. I’m a much more anxious person now, purely due to being Olivia’s mum. I was recently offered NHS counselling for PTSD, but then they pulled it after 2 sessions due to Olivia’s condition still being ongoing. Ironically the T has to have FINISHED before you can get any help for PTSD.

Diary, October/November 2024

Oct/Nov 2024 stats:
Calls to GP: 19
Calls to 111: 6
Totally sleepless nights: 12
Reduced sleep nights: 23
Work days: 2 (a few hours here and there)

14^th October: We have been living at the Grottage (as my pal Nay has so aptly christened it), in The Dark Hollow of Perpetual Rain on the edge of Exeter for 6 soggy weeks.

Olivia has begun to stay awake throughout the night with alternating diarrhoea and constipation. A rash of acne has broken out on her face. She is doing a lot of shouting and throwing things - we had to take her toys out of her bedroom as they became weapons. Seeing her suffer like this is tough, she is communicating hard but what exactly is she trying to tell us?

She loves having baths (“BUBBLES”) which seem to help her stomach pain, so we are spending too much time in the Grottage’s old bathroom, which Matthew says reminds him of Hitler’s in the famous Lee Miller photograph. Mildew down the walls. Stained tiles and brown carpet on the floor, with actual mushrooms growing out of it. A single dingy bulb lights up the stairs outside where we sit listening to Olivia splashing about.

Our new GP has been great and last month sent off an urgent hospital Gastro referral. She is trying a range of medications, including something for an obstructed bowel which is just as fun to cope with as it sounds (one night we got through 24 nappies!). She has referred us to the Learning Disability Health team, and a very thoughtful and caring young male nurse came out to visit, he took a full history and suggested a few new avenues. [The LD Health team were to become our lifeline over the next few months, consistently listening to and advocating for us.]

4^th November: The lack of sleep is insane and the worry is killing me. I rang 111 at 5am yesterday morning, when I was at my most depleted. I got a call-back from an on-call GP who said we should take her to A&E. But she won’t get in the car and an ambulance would scare her. The LD Health Team are going to poke the Gastro department and find out what’s holding up our ‘urgent’ appointment.

14^th Nov: I’ve now rung 111 a few times, they either get a GP to call me back, who can’t really help, or they try and get us to take Olivia to A&E, but she won’t go. There doesn’t seem to be any alternative.

16th November, 6am: Made it to A&E! Sent in as an emergency by 111 after a truly terrible night when Olivia tore her books up. Managed to get her into the car by sobbing and begging.

6pm: Navigating A&E with Olivia was tricky. They managed to sedate her with a spiked yoghurt so she calmed down, but not enough to let anyone examine her. Then after another 3-4 hours she started trying to leave and we became A&E cubicle doorway gatekeepers which was very stressful. After another 3-4 hours we gave up and asked to be sent home. They released us 12 hours after we’d arrived with a promise to alert the Gastro team to get in touch (NB. They did alert them and they didn’t).

29 November: It’s our third A&E visit and this time we have finally got her admitted to a Gastro ward. They are going to give her a general anaesthetic in order to have a diagnostic scan. RESULT.

Notes on Oliva’s hospital stay

Accompanying a LD adult who is staying overnight in hospital is exhausting. The ward nurses aren’t trained to look after them, and we were pretty much left to it. Worst of all, THE WIFI DOESN’T WORK 😱. There is no spare bed in an adult’s ward room, as there would be in a child’s. The first night I slept upright in a chair for about 20 minutes, then for about an hour on a sheet on the linoleum floor (they did put a mattress into her room for us after the first night). Olivia spent all day every day trying to escape, we ended up sitting in front of her door to block it, or pushing her around the hospital corridors in her buggy. She was admitted on a Thursday evening, and was sent down for a scan on the following Monday afternoon. These days were the toughest for us yet.

Things were brightened by the wonderful LD hospital nurses (the hospital arm of our community LD health team, these people are keeping us going) popping in on the Monday morning. They made her laugh, and supplied a disco light which Olivia loved and which helped pass some of the time.

We took it in turns being bedside with Olivia and catching up on sleep back at the Grottage. On the morning of the scan, I was pushing her tiredly around the hospital corridors in her buggy just for the lols, when I saw that my brother was trying to call me. It was bad news: Dad’s house buyers had dropped the offer price by nearly 50k after their survey revealed a lot of work. We suspected that they were going to bail completely. This meant that we in turn couldn’t buy the old pub, and were stuck below sea level for the foreseeable future.

That night I crawled home from my hospital shift through streets covered in debris from Storm Darragh to find that the Aga had blown out and the house was freezing. In contrast, I opened the fridge and it was lukewarm inside. More alarmingly, scuttling sounds came from the larder. Too tired to face any of this, I dug out a bar of chocolate and a bottle of wine and took them to bed. And reader, I cried.

Next week:
First anaesthetic and results
999 - police protection against our own daughter

So much of Extreme Parenting is admin. All SEND parents reading this will be nodding vigorously. The admin is mental. They are finishing us off with the admin! Here’s an exciting photo of some of mine. Where are you going? Come back!

This week

We’re on Day 24 of Olivia being happy and in between periods. This is a) a record and b) obviously great, but also worrying as there’s no sign of her next period (which is of course why she’s happy). Her period is now 15 days late. Last month she started getting distressed a full week before it arrived so we knew it was imminent. So what’s happening this month? Not a clue. I actually think she might be starting to wobble today, but I’m probably overanxious.

We had our big Multidisciplinary Team meeting about her health this afternoon. I’ve been getting our paperwork in order for it. God, the hours I’ve spent recording, researching, soul-searching around Olivia’s condition. The letters/emails I’ve sent. It’s a physical file 2 inches thick with ten times as much in my email/digitally. But it’s too easy to be dismissed without written evidence, also you start doubting yourself when you’re tired.

The Gynae hospital doctors failed to show up to the MDT. Without them it was hard to discuss her health, but our GP was great and we agreed to try hormone patches, then to open a discussion about a hysterectomy as a final resort if those don’t work. Her school were brilliantly supportive, and our social worker is going to assess us for some kind of continuing health funding, no idea what this can get us but it’s not going to hurt. Not impressed with the Gynae team lack of turnout frankly and our GP is going to contact them about it. The LD Health Team continue to be great, they called the meeting and are consistently there for us. If you’re getting confused with all these agencies/teams, it IS confusing. 17 different organisations are currently involved with Olivia.

Diary, Autumn 2024

September: So here we are in lovely Exeter, near where I grew up. We rashly agreed to move into a rented house which we hadn’t seen in person. It’s a picturesque old Devon longhouse at the bottom of the darkest, dampest valley in the county. As you drive down, the trees meet overhead, the car lights come on at all times of day, and there is a permanent half inch of muddy water on the rutted road, which often laps in through the front door. But it has got us a foothold down here and will do fine until we find somewhere to buy. My beloved Dad died at the end of 2023, his wreck of a house has been on the market for most of the year, we just need some brave souls to buy it then we can afford to look for somewhere permanent. It would be a nicer welcome if the rain were to let up, even briefly, but it’s relentless, we can see a damp tide mark gradually creeping up the inside of the cobb walls.

A rare few seconds of sunshine. This is how you imagine all Devon houses to look isn’t it?

Education education education

We thought that moving in the summer holidays would be best for the kids. We hoped it would give Devon CC time to find Olivia a new school, having told them our moving date several months in advance. Naïve optimistic fools that we were!

Devon informed us in July that they were unable to start approaching schools until we had physically moved. Also they needed an up-to-date EHCP, which we didn’t have as Kent hadn’t updated it for 10 years. Honestly, TEN YEARS. In Devon, as in the rest of the country, there is a big shortage of school places for SEND kids. Our DCC Schools Liaison Officer did try contacting a few settings in September but essentially it came down to me to find and approach places. I considered around a dozen, and approached six, all of which were full or ‘unable to meet her needs’ (legal catchphrase). Our lack of the right paperwork was not helping Oliva’s case either.

Eventually I re-approached a perfect-looking independent SEND FE College and basically begged them. They overcame their initial reluctance and invited Olivia for a taster day. By this point it was mid-October and she had become extremely lonely. Her stomach problems had worsened considerably, and she was spending a lot of time in her bedroom (as Marge Simpson says about Bart, she was becoming ‘Isolated and weird’). Without her lovely enablers she would have been totally isolated, but they only saw her a couple of times a week for a few hours. Still we remain incredibly grateful to them.

Luckily she was well enough to attend the FE College taster day and absolutely loved it, her shining face as she left was heart-warming. They confirmed shortly afterwards that it had gone well, and they were offering her a place. Our DCC Liaison Officer said she just needed to get the funding agreed by senior management at the Council. Olivia was entitled to full-time education, so we asked for a full-time place. We were so happy!

But then we heard.. nothing. For weeks. And weeks. And weeks. I rang every week asking for progress but our Officer said that she wasn’t privy to any more information and she was as much in the dark as I was. In desperation we messaged our local MP who wrote to them, and by early December we also had a (wrong!) hospital diagnosis which backed us up (more next week). But we still heard nothing.

Finally I caved and in early December told DCC that we would consider a part-time placement instead. We were given the OK a few days before Christmas for her to start in January for three days a week. She would have been out of education for nearly 7 months. Her health had plummeted during this time.

“The Devon CC SEND schools budget deficit is currently over £160 million, with the cumulative deficit projected to be £207 million by 2025-26.” - Google, Oct 2025

Independent SEND FE colleges are expensive, so every week the Council delayed agreeing Olivia’s school funding was saving them crucial cash. There are no full-time students at her college except one and his parents took the LA to tribunal to get this. We could have done that, but of course lacked both the money and the energy, which they pretty much bank on. 97% of all tribunal cases in the UK that are brought are found in favour of the parents, against the LA. Ninety. Seven. Percent. Could the system perhaps be totally broken?

It wasn’t all doom and gloom though. In late November two promising things happened in perfect synchronicity. 1. We looked around a beautiful ex-pub freshly on the market that we totally fell in love with, it was perfect for Olivia and 2 minutes’ walk from my best friend. 2. The same week we also accepted a decent offer on my Dad’s house. Could things be falling into place at last? (Clue: obviously not, that would be much too easy)

Next week: Hospital admission
Rodents & storm damage. Is this rock bottom?
(All the fun next week!)

We go to a playground at least twice a week - this photo was taken on Friday. Olivia mainly goes for the big swings (she is a champion swinger), but her absolute favourite thing is to lurk at the bottom of a tube slide and watch little kids shoot out. Much to their surprise! If she was a bloke we’d have to stop her as it would look creepy. But she just wants a high-5 off them.

Playground stats:
Playground visits I’ve ‘enjoyed’ in my lifetime: c3000
Playground visits Olivia has enjoyed in hers: c7400
Local playgrounds currently visiting, on a rota: 10
Best swing in Exeter: Cowick Barton playing fields

She can be hard to move on from the end of a slide. And she doesn’t quit if it starts to rain, even torrentially.

All remains calm here. We are now on Day 14 of Olivia being happy, well and firmly between periods. Usually this phase lasts anything between 10 and 18 days, so we’re on high alert. It’s been nearly 3 years since she first developed symptoms, and a year since she got seriously ill. I still haven’t told you about the start yet, seem to be pinging about in time more than I planned, so let’s go right back and get things into context.

Just to say - writing this part was not easy, it’s hard to look back knowing what I do now, ‘the retrospectoscope’ can be painful to look through. But I’m hoping cathartic too.

Diary, November 2022, Kent

Weds: Olivia has woken up in a very odd mood, she would normally be excited for her disco tonight but she’s not interested and is off her food (very unusual). She doesn’t want to get dressed. She’s not verbalising or smiling. She hasn’t done a poo for several days which might be the problem?
Teatime: Threw her plate of pasta at me. Even when she had Covid she still ate pasta.
Thurs: Same as yesterday, calpol seems to help a bit.
Thurs evening: She took off all her clothes, shut herself in her room and started to break things. She has never done this before and it’s scary. She then did a poo which without a nappy on went everywhere. Her dad put his head round the door to try and calm her but she screeched and launched herself at him, then took a large picture off the wall and threw it at him. He has a big scratch down his face. We retreated, sitting on the stairs for an hour after which she let us in to clean the worst up. But she then stayed awake most of the night shouting. The violence is really worrying, something must be badly wrong. I rang 111 who told me that, as it was difficult to communicate with her, best to contact our GP in the morning, who she knows and trusts. I didn’t think she was safe to put into the car, and she would be frightened by an ambulance.

Friday: Rang GP who thought it was probably pain caused by constipation, which Olivia can suffer from. He gave us laxatives and referred us to a gastroenterologist. Waiting time: approx 12 months.

Sunday 5pm: In an effort to get her out of the house and get some food into her, we drove to McDonald’s, her favourite place in the world. If you’d told me Before Kids how much money/time I would give the Golden Arches in my life I wouldn’t have believed you. We had to pull the car over half-way there as she had an unprovoked meltdown - kicking, grabbing my hair - and it was dangerous to drive. It was snowing but I’ve never exited a car so speedily. Olivia needs space if she’s unhappy, she can usually sort herself out given time on her own.

We were stuck by the freezing roadside with our coats in the car. If we gingerly tried opening any of the doors, Olivia went ballistic – kicking the door shut and hitting out at us. We watched as she climbed around inside the car shouting, and wondered if she could accidentally take the handbrake off or set off the alarm. After 20 long minutes, she managed to climb over into the boot and then was unable to get back across - luckily for us she’s severely dyspraxic. So we quickly got into the front seats and drove the 10 minutes back home. She allowed herself to be led quietly into the house.

December: After a week or so, Olivia has started to gradually improve, but she continues to have problems with her bowels. The laxatives do seem to have made her a bit more comfortable though.

January 2023: We rented an expensive AirBnb in Devon to have Christmas near my family, but she was miserable and didn’t want to go out, even to see her beloved Grandad or cousin, or go to her favourite beach.

November – March: Olivia hasn’t had a period this entire time. I keep ringing the GP and Bowel & Bladder team, we are trying different laxatives and dietary changes, and wondering why nothing much is working. We are all waiting for the hospital appointment which keeps being pushed back.

June 2023 - First meeting with hospital gastro team. She was as good as gold but wouldn’t let anyone actually touch her. They have put her on a waiting list to come into the hospital for a general anaesthetic in order to have a bowel scan. Great! But the waiting list is over 18 months long. I raised the issue of delayed periods. They said this was ‘almost certainly due to the stress of her gastric issues’. Didn’t occur to us to question this at all - I look back at this with my head in my hands.

Eventually we moved house to Devon in summer of 2024 before anything had happened beyond this initial consultation.

We will much later (July 2025!) discover that during this first meltdown episode, she had actually contracted an infected fallopian tube. As this was not treated, it kept swelling and this distention put pressure on her other organs, twisting one of her ovaries and affecting her abdominal wall and bowel. This was causing agonising pain especially during her periods.

I’ll wait for hours until somebody comes out.

Next time: we move into a giant damp sponge of a house in Devon. A new local authority, the fight for education, the fight to get Olivia scanned. And could it - just perhaps - be gynaecological?

A much better week here, so I can tell you some normal extreme parenting things, rather than extreme extreme parenting things, such a nice break for us all!

Last Monday evening (my 60^th birthday, impeccable timing) Olivia suddenly brightened up and she fell asleep that night at 1am – the earliest for weeks. Tuesday we got her out to the playground (again first time for weeks) and she fell asleep at midnight. Wednesday she made it out with her lovely enabler K for a couple of hours and went to sleep at 10pm. Thursday she made it back to college. Her specialist independent SEND college is quite simply a wonderful place and she loves it there – this was her first proper day back since early July (except a false start at the beginning of term in September). Her teacher is a fantastic and experienced educator and as you can see from the photos, Olivia loves her. Matthew dropped Olivia off and the deputy head asked for a chat - said that they have been worried about us, and to let them know if they could help in any way. We are surrounded by great people who care and this is comforting. Although nobody can actually DO anything much. I have a concern that the cash-strapped Education team at the Council will pull Olivia’s school funding if she continues to miss so many days. I absolutely wouldn’t put it past them.

On Friday some of my dearest old friends and family arrived from far and wide to help me celebrate my birthday. We took Olivia to overnight respite (‘sleepover’ she calls it) for 2 nights. Before she turned 18, when we lived in Kent, her respite was a purpose-built SEND children’s centre with a jacuzzi, soft play, tricycles and designated night staff. This is a humble small house with a few bedrooms, a kitchen and a dining room. But she still really enjoys going - mainly down to the lovely (day-time, sleep if they’re lucky) staff who are fazed by nothing and great for a giggle. And of course to mingle with some peers, she gets very lonely when she is stuck at home sick. On Friday she seemed particularly delighted to get shot of us. So to the celebrations: on Saturday a whole gang of my favourite people ate a long lunch out at our favourite restaurant, drank fizz and cocktails and danced for hours. It was bloody wonderful. I am reset (see picture below of a crazed/reset woman).

We picked Olivia up on Sunday, she had had a great time, she was also very happy to be home and eating her favourite roast dinner. She even graced us with her presence to watch Strictly before ‘Story in Mummy Bed’ (DITTLEPIG - damn, it’s a good one though, I can see why it’s lasted the test of time) and 10.30pm bedtime. Today is Monday and she has gone to college again which means I can actually fricking WORK. More about my job another time, all you need to know for now is that I love it and wish I could focus on it more.

Car chaos

So last week Olivia’s enabler took her out to the beach for a quick visit, but on the way back her car broke down beside a busy roundabout next to the 4-lane A38. She rang the RAC but obviously they were going to take a while so I set off to pick Olivia up. They hadn’t been out for as long as usual and Olivia was not at ALL pleased to see me. She kept pointing at the road and trying to get K to sit back in the driver’s seat. She flatly refused to get out and into my car. We were concerned that she might open her door out directly into the traffic so had to lock her in the car, which was complicated as with K and the key outside the car, this was going to set the alarm off (but an upset Olivia might have grabbed K’s hair/kicked out at her if she stayed inside). K ended up hovering slightly riskily near Olivia’s car door but just out of traffic reach just in case. We tried to explain to her that the car was broken, but Olivia was having none of this. She was not having her first proper outing for weeks cut short.

If Olivia gets ‘stuck’ like this she needs time on her own to calm down. So K and I had a lovely long chat on the hard shoulder of the roundabout while cars whizzed past us. Every few minutes I would stick my head into K’s car and ask Olivia if she wanted to come home/get into Mummy’s car and would have a foot aimed at me, or be spat at. At least it wasn’t raining.

Eventually the RAC man arrived, we explained to him that there was a grumpy ND teenager in the back of the car and he took it philosophically. He climbed into the driver’s seat and attempted to start the engine. As soon as she saw him, Olivia finally accepted that the car was indeed ‘broken’ and like a little lamb, climbed out (on the safe verge side) and got into my car with a big smile as if this had been the plan all along.

Just a normal day in the extreme parenting world, the whole thing took nearly 3 hours door to door. Further highlighting that, even when she is well and with a carer, one of us still needs to be on call.

Next time

Will she have relapsed? Previously it’s happened a week before her period arrives, pretty much without fail. First the sleep starts to slip, then she gets unhappy, then BAM we’re back into all night running around/howling/breaking things. It’s now 3.5 weeks since her period so it could be any day, although her last period was a week late. We’re on Day 6 of being well currently, think we deserve a bit longer, she’s just starting to get some colour back into her cheeks.

A light on the horizon is that a multidisciplinary meeting is being arranged, this involves every significant health/education/social care professional who knows her. It should help to come up with some kind of longer-term plan, but it will take a while to get a date that everyone can make. An even dimmer light on the horizon is trying out hormone patches, which we have no faith in but hey it’s a new thing. Can’t start those until Day 5 of her next period though.

Stay tuned party people!

It’s my husband’s surname, OK?

Feeling miles better the day after surgery, July 2025

This week’s diary: 28th September

Stats for the week:
Totally sleepless nights: 3
Nights gone to sleep after 6am: 4
Full sleep nights: 1 (sheer exhaustion, but it was still wonderful)

Calls to 111: 2
Calls to GP: 3
Days waiting for hospital gynae team to call: 7
Calls to Gynae hospital team: 1 (GP made 3 on our behalf)

Gynae hospital Consultant saying they don’t have a clue what the problem is (maybe it’s not gynae at all?): 1

Olivia days in college: 0
Me days in work: ½
Husband days in work: 2

Firstly a massive thank-you to all you lovely subscribers. Each one of you has made me feel slightly less alone in this lonely business. Particular shout-out to Katy from We Care who read my stats out at the Lib Dem conference. Katy does fabulous work advocating for unpaid carers.

Tomorrow I will be 60. All I want for my birthday is 8 hours’ sleep. [NB I got 7! Not bad at all]

What a week it’s been. Olivia is now on Day 25 of misery/no sleep/pain. I finally got to speak to a gynae Consultant (not hers, we never seem to get the same one twice, I imagine them drawing straws: ‘Oh god it’s that woman again, I spoke to her last time, you do it’).

At least I appreciated his candour: “I honestly have no idea what can be causing this”. He was adamant that the recent surgery had been ‘a success’, and that it was ‘extremely unlikely’ there had been any complications. Therefore it’s ‘almost certainly nothing physical’. I tried to make him swear on this but he was strangely reluctant. He had the nerve to suggest that it might not even be gynaecological. He wishes! We have months of written records showing a 100% correlation with her menstrual cycle. Plus his team did a gynae OPERATION on her, after which she (briefly) got BETTER.

He suggested convening an MDT (Multidisciplinary Team Meeting) to discuss what the hell to do next. This involves social care, our GP, the LD Health team as well as hospital doctors. This is an excellent idea but it will take weeks to arrange. In the meantime he suggested trying contraceptive patches on Olivia. She’ll hate them but if we stick them on her back she won’t be able to get them off. No faith at all that these will do anything – she’s been on the pill previously and if anything, it made her worse. But we haven’t tried them yet so why not eh? We’re in these medical waters now people. Just throw everything you can think of at the issue. Leeches? Blood-letting? Bring them on.

My usual nightly sleep schedule:

8-9pm – ‘Story in mummy bed’. Strict rules: we have to share a duvet, no pillows allowed and it must be totally dark. The story must be either The Three Little Pigs, Jack and the Beanstalk or Dora’s Pirate Adventure. ‘Pirates’ is the most punishing as it’s a fairly long musical. Current favourite is luckily ‘Pigs’. I like to think I’ve perfected it over the years.
10pm – I pass out, Matthew does the first shift.
c2am – I wake up as can hear her slamming doors, jumping up and down, shouting and running around the house. Swap with Matthew.
c6am – Matthew wakes up as can hear her slamming doors etc. Swaps back with me.
6-8am – I doze fitfully, Matthew gives her breakfast and a bath.
8am – she’s asleep! We try to crash out. Unfortunately at 8am my body clock thinks ‘time to get up’ so at best I doze a bit more.
10am – chores/emails/chase doctors.
12pm – we wake her up, ostensibly so that she won’t be up all night the next night. This has NEVER worked but hey we’re optimists.

Repeat all over again the next night. For the last year we have done this for around 12-18 days each month, then she’s been fine, almost normal for a week or two, going to sleep at 10pm or earlier by herself in her own bed no trouble. Then the whole shebang starts up again the week before her period.

Quick backstory

I personally hate articles/books that jump around in time but I thought some context might be useful. Olivia was born at 5am on New Year’s Eve in 2006. We knew immediately that she had Down’s Syndrome – this was not a surprise as I had been high risk during pregnancy and we knew that whatever, we wanted to keep her. Most people do not make the same decision that we did and a high number of unborn babies with DS do not make it into the world. It’s not an easy decision for most people.

As Olivia grew up, it became apparent that she had other things going on alongside her Downs Syndrome. Aged 7, she was diagnosed with ADHD (she quite literally never stops moving), and she is also clearly autistic, specifically with a type called Pathological Demand Avoidance (PDA). This means that she finds any demands/requests extremely anxiety inducing, and so is unable to comply with them, just becoming more and more distressed if repeatedly asked to do anything. We are quite used to this now, but it can require a good deal of ingenuity to get around. (NB to any old-school parents, ‘just being more strict with her’ is a recipe for total disaster.)

Olivia has a Severe Learning Disability (SLD), she is incontinent and wears ‘pads’ (they’re nappies! But we’re not allowed to call them that now she’s a grown-up). She is mostly non-verbal but very good at letting us know what she wants. A few individual words include ‘crisps’, ‘McDonald’s’, ‘ice-cream’, ‘delicious’ , ‘bottom’ (after a hilarious fart) and ‘pickle’ (about herself).

Olivia is usually a delight, and we are all crazy about her. She has a lot of quirks including physical tics and teeth-grinding, both of which have got significantly worse during her health problems. But her appetite for life is as big as her appetite for fried food. She loves music, birthdays, small children and singing. She has watched Finding Nemo a least once every day of her life since she was 3. She especially likes being outdoors and anything to do with water -she can sit in the surf at the beach for hours.

From last August, she gradually became more and more unwell around her monthly period, and our ‘journey’ (I hate this term, it’s not as if we’ve got very far) to discover and then treat what is causing this has probably been the hardest road of my life.

Diagnosis challenges:

- She can’t tell us what’s wrong
- She can’t recognise herself what’s wrong
- She expects her dad and me to read her mind, work it out and fix it
- She hates (REALLY hates) people getting too close to her except on her initiation, and as for touching her, no way! So she can’t be examined unless unconscious.
- She doesn’t respond to pain in the same way as we do – it doesn’t restrict her movement and she doesn’t hold onto the affected area. So she can LOOK fine.

Next time: How did her current problem start? And a party! Finally something uplifting: we are definitely having some kind of 60th celebration next weekend, even if Olivia is still bad. We have a reduced format Plan B which enlists the help of family to look after her on a rota system. Bring on some fun!

Subscribe now

Coryton Cove, Dawlish, December 2024

Why am I here?

Everyone who posts on Substack seems to either be, or want to be, a writer. I am not a writer. I am a woman living an extreme domestic life not of my own choosing. Recently it has become so much more extreme than usual that I felt compelled to start documenting it. Frankly if it wasn’t happening to me I would find it hard to believe. So I need to let off steam, and I need witnesses. Too many carers are hidden away quietly caring indoors (we literally are stuck here most of the time), and complaining about the person you care for feels very disloyal. After all, you love them, which is why you’re doing it. And it’s not their fault.

So this is an honest account of what it is really like parenting a young adult with high additional needs during a long-term health crisis (hers, although mine could well be next at this rate).

This is emphatically not a pity party! I love my life, and wouldn’t want to swap places with anyone. But I’m afraid that self-pity may almost certainly make an appearance at some point. But so will joy, humour, cocktails and raving. We’re all more than one thing after all, and nobody likes a killjoy.

Although no getting away from it, this has hands down been the worst year of my life.

People in our house

Me, Cooky - nearly 60
Husband, Matthew - 57
Son, George, 20 - ASD, at university doing Politics
His girlfriend, Lija, 23 - also ASD, visiting on 6 month visa from Estonia

The star of the show: Olivia, aged 18, Down Syndrome, ADHD, ASD, Severe Learning Disability, doubly incontinent, mainly non-verbal, absolute pickle.

[NB: names changed for younger generation]

Today’s diary: 18th September 2025

For the last 17 days Olivia has not been sleeping and has been very agitated and distressed. This is what she was like for several months before she had emergency gynae surgery in the summer and we really thought our troubles were over when that appeared to be a great overnight success.

When I say ‘not sleeping’ I don’t mean ‘takes a bit of time to get off’ or ‘wakes a bit’. I mean literally not sleeping, none, at all, all night. She has been awake until around 6am most nights for the last fortnight – except last night, which she is still awake from now (it’s 3pm). All night she bellows in pain and roams the house, throwing and sweeping away anything that gets in her way. She loves a clear worktop/table and hates ‘stuff’ anywhere – a bit like her mama but on steroids. Last night she even started tearing up her toys and books and throwing them to the back of the room. We can’t leave her on her own as it’s not safe - but staying in the room with her is also risky – she likes her own space and has hurt each of us on many occasions over the past year, either pushing us away rather too hard, throwing items at us that she doesn’t want, and hair pulling/pinching/kicking out when overwhelmed. None of this is done because she wants to hurt us, it’s her way of shouting to us SOMETHING IS BADLY WRONG HERE, ACTION NEEDED, MAYDAY, MAYDAY. Also I suspect that she’s cross with us for not being able to read her mind and put it right.

Last night her blessed brother stayed up all night with her so that we could get some sleep. We kept half an ear out and Matthew had to get up a couple of times to change her (George doesn’t do her bottom half) but it was a better night (for us) than we’ve had all week. It was an awful night for her. And him presumably but he didn’t complain.

Previously the pain was very much connected with her monthly period – she would go loco for a week before it, then worse during it, and also winding down for a few days afterwards. This time her period ended 6 days ago so why isn’t she improving? I stare at her and will her to suddenly open her mouth and say articulately: ‘Dear Mummy, my womb is very painful, especially when I need a poo’. But of course she’s never going to do this. I try pointing to her tummy and asking if it hurts but she just stares blankly at me. So frustrating.

I swapped with George at 6am and rang 111 at around 8am when her agonised cries became too much to bear (23^rd call to them in 12 months). Of course, they said she should be taken to A&E immediately. We have tried this previously on a few occasions and it was not a success. Imagine you’re in A&E with a belligerent baby rhinoceros, who doesn’t understand why they’re there and is desperate to get back to the river – or get into other friendly rhinoceroses’ (as they see them) beds, much to their surprise/horror, or who energetically ‘tidies away’ hospital equipment. They won’t let anyone touch them, let alone examine them, and as for taking blood – are you kidding? At any point, they could charge. Goring isn’t off the menu. No doctor seems to know what to do with her or who to refer her to, and after 12 hours of this we just take her away as we can’t keep up the vigilance.

Last week we spoke to her GP and she is being re-referred to the gynae surgeon who did her operation in July (more of which in future posts), which helped massively at the time. That’s absolutely the person we need, but it could take weeks, how can we cope with her until then? What if she gets worse? We have also been re-referred to the Exeter Learning Disability Health Team. Wonderful people who have been very supportive during our troubles. They will groan when they see that we are back. But they can’t actually do anything themselves, it’s down to the Gynae team doctors who are hard to reach.

Selfishly, I have a 60^th birthday weekend celebration in a fortnight with dear friends coming from London, Leeds and even flying over from France. Olivia is booked into overnight respite. What if she’s not well enough to go? Have bought sparkly disco dress and everything. After a year of isolation I am desperate to see my pals! *stamps princess foot*.

Stats for the year (Aug 24 – Sept 25):

Number of phone calls I’ve made to health professionals about Olivia’s health problems: 150 (conservative estimate based on phone records)

Number of calls to 111: 23

Number of calls to 999: 5

Number of occasions the police have come out to our house: 3

Number of agencies that we have had to involve/do battle with/be incredibly grateful for – 17 (not individuals, that’s literally countless)

(Fruitless) trips to A&E: 4

Ward admissions: 3

General anaesthetics: 3

Time from first phone call to the right surgery: 11 months

Number of college days missed by Olivia: 60%

Number of days of work missed by one or both of us: Me – 95%, Husband 50%

My annual income at end of: June 2024 – 45K
June 2025 – 9K

Next time: backstory, and a bit more frontstory