true tales from the gates of the underworld

October 20, 2017, 11:27 am
Filed under: Life, ND is OK, Uncategorized | Tags: , , , , , , ,

In one week, we will face the day we have been waiting for since the day 4 years ago when I went to see our Health Visitor, desperate because Squidge just wouldn’t sleep. The wait intensified when we were referred, on his Reception teacher’s request, for an ASC assessment. 

Over the years, there have been different stages of waiting; at first it’s nervous anticipation. Once your hopes have been crushed some 300 times you’ve come home to no post from the assessment team, you learn to temper your emotions a little. You push it to the back of your mind, you are in no man’s land. Every day when you return home you get a little reminder that you are still waiting, that nothing has changed. 

Once in a while someone asks you how the assessment process is going, and you resolve to phone the team, to beg for a cancellation (again), or for any information at all. You just want a little glimmer to feed your hopes. You wait by the phone for days, nervously. When the call finally comes, of course it brings no relief. 

You push it to the back of your mind again, repeating the cycle. One day, just when you have resigned yourself to the fact that it will probably never happen, you come home to a letter. A letter with a date. 

The fear begins to set in, along with the doubts. 

What if we got it all wrong? What if they just can not see what we see, live with every day and night? What if it’s all down to our parenting? 

The fears are much more centred around not getting a diagnosis and having to live without support and answers in limbo for another 2, 5, 10, 30 years. 

You would have thought that after such a long wait, this last bit would be easy, but it doesn’t feel like you know you are coming home. It feels like you should come home, like your long awaited comfortable safe space might be there, or it may have disappeared, been redecorated or put on its head while you were travelling. 

One more week.


Please don’t tell me everything is fine
September 21, 2017, 9:36 pm
Filed under: Life, ND is OK | Tags: , , , ,

Back to school. I think most parents of neurodivergent children dread this time of transitions and new beginnings. The meetings, the meltdowns, the battle to be the voice for our children. 

School staff always think they are doing me a favour, when they tell me in a reassuring tone how great Squidge is at school. Good as gold. Always does what is asked of him. No problems at all. Everything is fine.

Everything is not fine.

My child comes out of school and he is pressurised like a shaken bottle of coke, and the lid is about to come off. There is biting and headbutting, screaming, vocal stimming and hitting. Clothes and shoes are discarded almost immediately, sometimes they start to come off before we even get to the car. He bit his brother so hard today that he broke the skin. I need to keep him safe, too.

Everything is not fine because he has been good as gold all day. No sensory breaks, always hiding behind the mask. Being himself is scary at school, he says. 

Everything is not fine because he is in a new classroom, where the windows are different to his last one, the tables stand in different places, the routines are not the same. His list that helped him gather himself to go home at the end of the day didn’t make it to his new teacher.

Everything is not fine because he doesn’t get to change his reading books when he wants to. Explaining that he can read library books does not help.

Everything is not fine because I can’t safely drop him off with the other children outside. There is nobody to watch the gate. 

Please don’t tell me everything is fine, you are not reassuring me. All it does is undermine my belief and hope that you can understand and support my child, because you can not see how hard he struggles. He probably is good as gold, but please, for once, could you say Tell me about the little things to look out for? What can we do to help? And maybe one day everything really will be fine.

I wish you could see him
July 13, 2017, 4:47 pm
Filed under: Life, ND is OK | Tags: , , , ,

I wish you could see him the way we do. The joy and hunger for life, but also the struggle, every day. Everything is bigger, louder, more. Open. Intense. His laughter, his sadness, his love, his fear.

The energy that comes off him is almost palpable. To you he may appear calm, but you can not see in his eyes how his brain never stops ticking. How his senses drink in his surroundings. How he fights to keep them out and pull them in, all at the same time.

There is always movement. Most of the time, his whole body is in flux. Running. Round and round, upside down, tip toes, heels. Eyes wide open, to know, to feel, where he is. When he closes his eyes, he forgets, he stumbles, falls. 

Look closely. He pushes, he pulls, he squeezes and crashes. The longer he sits, the bigger it gets. Hands, feet, head, body; first gently,  then less so. The mask slips a little more with every minute, unable to hide the energy beneath it. Tension.

Talking, humming, singing, vocalising. Repetition. Vibration. Buzzing. 

He wants to be everywhere, all at once. He wants to know everything. When you think he isn’t listening, he may be deeply in thought. When he doesn’t say hello or goodbye, he may be avoiding the shift from having you there, to you being gone. Sometimes, being everywhere at once is just too much, but he can’t stop. He can’t shut it out. Tears fall. Walls cave in.

At night, when dark descends and the world slumbers, he is still awake. Senses wide open, mind alert. Even when his body is exhausted, there is no end, no rest, no respite. Sleep does not come. He can’t. The world won’t let him.

There are spaces, safe. Tight, dark, almost no space at all. Safe. Even there, he always seeks for more. Always more.

Do you see, do you understand? 

The M word
March 16, 2013, 9:22 pm
Filed under: Life | Tags: , , , ,

We’ve been hit hard by illnesses in recent months. Actually, thinking back, poor squidge has always been prone to catching all the bugs and the incubating them into something nasty. In November he had pneumonia, which took doctors way too long to diagnose, and which made him so poorly I wished I would never have to witness anything similar again.
All of his illnesses start the same way. A bit grumpy at bedtime, then by the time I go to bed a few hours later he is burning up. Daytime brings -some, small- relief from the fever on the first day, only to strike back in the afternoon, and by day two he is floppy, grey and lethargic.
Our last bout, a strep A infection manifesting in nasty scarlet fever that took three weeks and a hefty dose of antibiotics for ten days to get over had only been three weeks earlier.
Monday evening when I went to bed I felt his hot little hand on my arm and thought “oh, no. Not again,”
Tuesday I woke up early to the sound of his panting breath. I counted. 65. I know it’s way too fast. I sit for a little longer. I observe. No improvement. He seems ok, otherwise, but I know something is not right.
The out of hours doctor rings back within twenty minutes, tells me to take him to see our GP who is about to open. I get the first appointment of the day. GP looks in his eyes, ears and mouth, listens to his heart and chest. Counts. 68. Too fast. His temperature is only a little above 38C/100F. She says she doesn’t know why he is breathing so fast but he needs to be in hospital. Do we want an ambulance or can we drive there straight away? We drive.
In the paediatric assessment unit a nurse waves us to the seating area. He doesn’t look unwell enough for a bed yet. We sit. Wait. Squidge sits in my lap, occasionally he tries to move and I notice his arms and legs shaking when he puts weight on them. An hour later a doctor, too young, too slim, blonde, comes to see us. She tells me she doesn’t know why we are there, he seems to have a cold maybe. She counts. 48. I mention the shaking arms and legs, she tells me it must be the fever. I tell her he gets poorly quickly and spectacularly. She tells me she will get her senior consultant to look at him to put my mind at ease.
We wait some more. The shaking increases, now happens also when he is sitting still. He looks pale, subdued, but makes eye contact, even laughs. The senior consultant listens to his chest and sends him for an xray, which shows an infection in both lungs. She prescribes antibiotics and asks for a urine sample before we leave. Of course, Squidge won’t wee on command or in a cup. His temperature is still going up and he becomes slow, yet still shaking. I undress him and stand ready with the pot. His eyes glaze over, his stare vacant as he starts shaking uncontrollably. I call the nurse who says he has a fever and he is sleeping. With his eyes open? His bladder releases a stream of urine that misses the pot completely, but the consultant is satisfied that he does not have retention. He jerks, his eyes refocus.
I dress him, ready to go, and he vomits everywhere. It smells of the antibiotics he had only taken an hour ago. The consultant says it’s the fever, now 39C. Keep giving him the antibiotics and he’ll improve in a couple of days.
We arrive home, and he vomits again, and the shaking becomes stronger still. He can’t walk because his legs won’t hold him, he can’t crawl because his arms won’t support. I try giving him his dose of antibiotics before bed and some paracetamol, and he vomits again. I take him upstairs to give him some milk, and he vomits again. I call the assessment unit, where a doctor tells me to try him with a fluid challenge. 5Ml by syringe every 5 minutes. He takes it, holds it. Falls asleep, but lightly. Moaning, in discomfort. He seems stiff, and hot still. I check his skin; it’s white and blotchy but no rash. 
I daren’t leave his side, so I stay next to him. I phone the assessment unit again and the doctor tells me that I can bring him back if I feel I need to, as I am not coping with treating him at home. I am coping, I just have a voice in my head that keeps telling me something is wrong. Something is wrong. It’s about 3 am when he has the first seizure. It’s a single full body jerk, and it wakes me up. He is burning. Shaking. At 4 am he starts twitching just with one arm, one leg. Then every few seconds his entire body spasms. His eyes roll up and into the back of his head, his breathing rapid. I sit for a couple of minutes and observe. Something is wrong. I know it.
I get dressed, phone 999. Pack a bag while Daddy stays with Squidge, still jerking. The ambulance arrives at 5. I run through our story and they bundle us into the back of the ambulance, and take us to hospital. In the ambulance he still jerks from time to time but the paramedic thinks it’s him trying to fall asleep. I know it isn’t, it happens every minute or so. We go through more details, observe. There drive takes a lifetime, and by the end of it we have plied Squidge with so much anti-pyretics that he has regained a semblance of consciousness.
In the Emergency Department I feel treated like a paranoid mother with her baby who has a cold, until he vomits again. They ask me to try breastfeeding him, but he can’t coordinate his swallowing, and every time he tries it goes down the wrong way making him choke, or vomit more. They bring us rehydration solution to syringe into his mouth, which also makes him vomit. He is shaking violently. The doctor says they will admit him for observation even though he is not clinically dehydrated yet. We go to the ward, and a doctor puts an IV access in his foot. Remembering the traumatic process four weeks previously when Raptor had to have one and it took 4 people, 9 attempts over 2 hours to get it in I was dreading it, but Squidge is now so lethargic he doesn’t even twitch, let alone whimper. Fluids are put up but and we see the consultant from the phone the night before, who listens to me. For the first time I feel someone is taking in what I am saying. Something is wrong. He is shaking, he is still jerking. She calls them myoclonic seizures. She mentions meningitis, which I don’t (want to) believe, surely they are just being cautious. We go for a lumbar puncture straight away. No waiting or messing around. In fact, there has barely been any waiting that morning. Again, he doesn’t even twitch or cry. The consultant looks at him, thoughtfully.
The results do not take long. An hour, maybe a little longer. She comes back to tell me herself. Meningitis. It doesn’t sink in.
They give him steroids to protect him from brain damage, and antibiotics, a big dose. Also fluids as he hasn’t peed since the day before in the assessment unit. They ask me to sit with a pot and try to catch some, which will take five hours and a bolus of 100ml that is meant to stimulate his kidneys.
He sleeps. Shift change, and the next nurse says Of course he is sleepy. He has Meningitis. And it dawns on me; this is real. This is us. He was lucky. My inner voice knew something was wrong. It sinks in. I feel panic rising. Dread. I look at my sleeping boy, tubes and wires and plasters mad curly hair. He jerks. He will be alright, right? The next couple of days pass in a blurr of bleeping, IV fluids and medicines, examinations and sleeping. Squidge sleeps about 42 out of 48 hours, only waking for boobies and a bit of food. He doesn’t vomit anymore, the jerking only happens every few hours, and the shaking is a lot less violent. Awake time increases, and we start hoping for our own beds again. The nurses come in less frequently, steroids stop.
Fresh air, a walk with the mei tai and Squidge on my back. The cannula still flushes beautifully. Squidge polishes off a packet of Quavers while his antibiotics run through. He wants to run, climb.
Things will be ok, for us.

Are you aware of the symptoms? I didn’t know Squidge’s symptoms were that of meningitis. I didn’t even really know there didn’t have to be the rash, red and non blanching, that we are always told to look out for.
I’ll do a separate post with a list of symptoms so it doesn’t get lost in this story. Please read it, please share it. Please listen to that voice in your head that tells you something is wrong.


January 3, 2013, 9:53 pm
Filed under: Life | Tags: , , ,

While I am feeding you to sleep, I remember all the times I have hoped for you to fall asleep quickly. I remember all the times I got frustrated with your boundless energy, and your chatter when it was so clearly bedtime.
I remember the times I got annoyed with you for bouncing around the bed rather than laying next to me, quietly drinking and drifting off to sleep the way your brother used to.
I remember all of this as you plant a sloppy wet kiss on my chin, one on my cheek and another on my eye, then throw your arms around my neck and say “Awww, cuuggles”… and I realise that these are our private moments. Nobody else gets to share these with us. Not your daddy, or your brother. Not your grandparents or nursery workers. This is our time. I do not wish it away, you won’t always be small, and you won’t always want me to hold you while you play, crawl, laugh and bounce yourself to sleep.
In the moments when you rest and take a break on my chest, little hands playing with whatever they can find, I breathe in your smell and try to commit it to memory, the way I try to remember every little thing you do and say, every cheeky grin, every sloppy kiss. I realise these moments will soon be nothing more than memories.. so after you fall asleep, I spend a few minutes or a few hours every night just watching you sleep, calm for the first time of the day. I listen to your breathing, your sighs as you dream. I admire the curly brown hair on the back of your head that is so unlike your brother’s.
Sometimes I even gently stroke your back, careful not to wake you.

I don’t wish this time away, I wish I could save it forever. I wish you would stay like this forever, but I look at you and your brother, and I take pride in how you have grown and learned.
I will just have to make the most of the time that is given to us.


Duracell Bunny
December 22, 2012, 11:19 pm
Filed under: Life | Tags: , , , , , ,

I’ve been meaning to post for a long time, but you know how it is.. Life happens.

I have come to the conclusion that Squidge must be a Duracell Bunny.
Some of you might know what I mean – a particular type of high needs baby. (ok, I know that technically he’s not a baby anymore, he’s fast approaching 20 months, walking, talking -making demands!- and occasionally even going on the toilet, but he’s my baby)
When he was born, he was well-nourished, full of all the lovely nutrients that had sapped away my vitality and patience in pregnancy. He weighed 8.6lbs, more than a whopping 2lbs more than Raptor, his 38cm head housing this always-running-at-high-speed brain. He was a solid, squishy little boy. And he refused to sleep for more than 20 minutes at a time, always in my arms.
Soon, we learned that he was what some people call a “scrawny screamer” – gastro-esophageal reflux disease meant more vomit than you could possibly prepare for – on average four full outfit changes including underwear for both me and him – pain, constant hunger, no sleep, a lot of screaming and pretty much static weight.
After experimenting with different medications, methods and old wives tales we settled into a rhythm that almost worked for us. I say almost because even at almost 20 months he’s little, 19lbs, and while the vomit reduced, he had problems with constipation instead, and he was still frustrated.
The biggest thing for us was the discovery that he would sleep for a couple of hours without being held laying on his front. By the time you have spent three weeks sleeping in 20 minute chunks, upright with a child on your chest, guidelines become a lot less important than actually being able to remember your name.
“tummy sleeping” introduced him to something exciting – a new perspective. Soon, all too soon, he learned that moving various muscles would influence this perspective. By 16 weeks he was crawling like a caterpillar, and this is when I first realised my baby appeared to have more energy than other babies. He was always on the move. By 20 weeks I had had numerous “oh god, where is Squidge” moments. By 25 weeks he had learned to pull himself into a standing position, even though he lacked the core muscle strength to sit unaided yet. By 7 months (last Christmas) he was accomplished at climbing and cruising around the room, often using his mouth to transport things.
Regular toys don’t interest him much, instead he likes to explore everything that adults use – be it forks, hammers, remote controls…screwdrivers appear to be a favourite.


He doesn’t stay in one spot for more than a couple of minutes, always intensely concentrated on what he is doing, reaching for things with an incredible determination.. Then moving on to something different and repeating the process. And never failing to astonish us with self-taught skills (at 12 months it was colour sorting, at 20 months he’s counting to five, knows how to turn various appliances on and make them do what he wants them to, and he can make logical decisions), he appears to learn something new every day, even when it seems like he can’t possibly be spending long enough with something to learn how it works.
Conventional methods of transport are a nightmare, Squidge is an escape artist of the highest order and wriggle out of any sort of restraint with ease. He strongly dislikes carseats and pushchairs, and only tolerates slings and carriers if he can be constantly on the move, and also have something to play with at all times as well as turn in all directions to observe. We had to give up using our stretchy wrap early on as he would lean back and attempt to backflip out of it.


Dinner with all four of us at the table is a rare affair, Squidge would rather roam about. He needs constant stimulation or he gets bored, frustrated and a bit destructive (in the sense that if we don’t provide him with stimulation he will seek it out wherever he thinks he can get it. Sometimes this involves opening and emptying my paperwork drawers or the shoe rack).


TV gets boring after a couple of minutes unless there is something interactive happening.
Sleep… Well. Sleep… I could say “what’s that?”. I can vaguely remember it… To get Squidge to sleep,you need patience, a thick skin, and make sure your hair is tied back if you intend on keeping it. We have breastfeeding acrobatics, singing, dancing, talking, running around, jumping, horsey play… And those are interspersed with little breaks of just a few seconds, that seem to re-charge his batteries endlessly. Cat-naps during the day seem to give him a new lease of life, and in the evenings he will be on his feet, and appear wide awake pretty much until the moment his eyes drop shut. and as soon as he opens them again, the fun starts all over.


Sensory stimulation seems to overload him sometimes.. At night, all the stimulation keeps him going, his hearing is incredibly sensitive, and touch sometimes drives him crazy – he seems unable, or unwilling to tolerate the touch of certain fabrics, showers reduce him to a shaking, hysterical mess, smells, vision and taste all have incredible effects on him.

Up until a couple of months ago he refused to react to social cues, and even having his name called would fail to elicit a response from him, that’s how absorbed he was in what he was doing.
Always on the move, never stopping, never resting. “Into everything” doesn’t even describe it.
It’s entertaining to watch from the outside, fascinating maybe, for family members who can only see the bright sparks for small periods at a time… But it’s utterly exhausting to live.
Maybe in future I can write some pieces though the gift of hindsight of how to deal with high-needs, high energy babies and toddlers through the gift of hindsight… Expert articles explaining WHY they are the way they are only help to the point that I at least don’t feel like there is something wrong with him, or our parenting… Until then, please get on, the ride on the Squidge Express will commence in 30 seconds. Please keep your arms and legs in at all times and don’t ever take your eyes of Squidge, then you’ll be alright.


The wonders of (un)happy pills
July 9, 2012, 8:11 pm
Filed under: Life | Tags: , , , , , ,

When I started on anti depressants for severe PND 14 months ago, I certainly needed them. Hormonally linked depression hit me hard and fast, and at the time, there was no other way out. Well, there was, but not a good one. They balanced me to the extent that I was no longer crying at EVERYTHING, I no longer wanted to run away and hide. I can’t say that they made me happy, though.
Over the months, symptoms came and went. The most apparent was the feeling of complete disconnection. It was as if someone had cut off the connection from my brain to my body. I KNEW that feeling sad, happy or affectionate was appropriate for certain situations, but my body just didn’t react. It got to the point where I barely smiled, never cried, I didn’t even get angry. I wasn’t a person anymore. I couldn’t even remember what it felt like to have proper feelings.
Bit by bit, they came, as I decreased my dosage. I started to smile, to relax. I finally felt that rush, the fabled overwhelming feeling of love that some mothers experience after birth. I had known for a while that I loved my Squidge, but because my body hadn’t felt it, there was a part of me missing.
I’m sure my husband is enjoying the effects of the reduced dosage, too. Nobody likes living with a zombie.
I’ve wanted to get better for so long, but I didn’t know how, I didn’t realise for a long time that something was missing. It took some very sad events to make me realise that the only way to find myself again, was to take away the veil of the medication. I did it against medical advice from my psychiatrist, against the opinion of he health visitor. They all said it was a sign of desperation, a symptom. Nobody believed that I may just know myself better than they do.
As soon as a week after beginning to wean myself off, I felt much more human. People remarked that my eyes had regain a glimmer, as opposed to the dull, blank stare from before.y face had expression.
The medication might have made the postnatal depression bearable, but in the end, they were keeping me in this place of disconnection.
I am whole again.