Tag Archives: neurodiversity

Drawing showing a regulated child. Her brain is being run by her curly grey matter (Cory) and she is calm, can listen and learn. It shows a fast transformation to dysregulated. This person is under the control of her amygdala (Amy) which is the fear centre of the brain. She cannot listen and learn, and her cortex is offline. The transformation back to regulated can be slow and take hours.

What Is an Amygdala Hijack and How Can You Help?

‘You’re HURTING ME!’ they cry. ‘Stop SHOUTING!!!!’ they yell.

What’s happening at these moments, when your child is beside themselves and they seem hypersensitive to every small thing you try to keep them safe and calm? When a whisper appears ear-splittingly loud and a featherlike touch is like being branded with a hot poker?

The Thinking Brain

When a child perceives a threat, their thinking brain, the curly grey matter or cortex (we’ll call him Cory) processes the information and decides how best to respond. Cory might override the emotional amygdala (Amy) and tell her to calm down, because it was ‘just’ a car door banging. And miraculously, Cory stays in charge and Amy has a little huff, but sashays out of the way.

But there are times when Amy decides that this is serious, so she punches Cory and seizes control. What happens next can seem wildly disproportionate, extreme, intense. Your child is in fight, flight, freeze or fawn mode, an automatic response to danger that’s run by the amygdala (Amy). For some children, Amy is more sensitive than others, constantly alert for danger and likely to respond with greater intensity than other (neuro-typical or non-traumatised) children.

When Cory is in charge, a person is regulated. When it’s Amy, then they’re dysregulated (also known as hyperarousal).

Regulation

Regulation is our default mode. It is when we can think, process, listen, learn, respond, react. We can draw upon knowledge and experience to size up situations and respond. As parents, we need to remain regulated to handle our child’s amygdala hijack. Things are likely to go downhill quickly if we panic or get overly stressed by it, because two dysregulated people adds up to utter carnage.

When we (or our child) are regulated, we’ll be relaxed, our movements will be fluid, our pupils will respond appropriately to light levels, our breathing will be calm, our limbs will flow, our skin will have good blood supply. We will adjust our volume, tone, pace to suit the conversation. We might be sad, excited, anxious, frustrated; and yet we remain regulated.

Dysregulation In An Instant

But something happens (we might trip and fall), or emotions build slowly until they hit overload and we push out of our window of tolerance and into dysregulation. Amy is the fear and panic centre of the brain and has a limited range of responses (fight/ flight etc). Our children act like rabbits in the headlights, goading, or running at full pelt. My daughter flees; my son freezes with a side of fighting.

When Amy is in charge, then our bodies will be tense, angular, our pupils might dilate so we can see better. Our breathing will likely be fast, short, panting; our heart will be racing in our chests. Our faces may pale as blood diverts to our muscles. We might get sweaty palms or goosebumps on our arms. We might shout, yell, push people away, run away.

Many children struggle to identify the early warning signals that are clues to an imminent amygdala hijack – my own children have sensory processing issues such that feeling hot or clammy or noticing a racing heart is beyond them. Which makes life tricky as we can’t take evasive action to disarm the hijacker (Amy).

An amygdala hijack is when Amy is in control of their brains and we have to deal with her, because Cory is offline.

How To Make Things Worse…

We can’t reason with Amy. She’s not listening. As parents, by trial and bruises, we discovered all the things NOT to do:.

  • Touching the person – a hug, squeeze, even a light touch, makes our daughter explode. She’s not all that keen when not aroused. Remember in fight or flight mode, all our senses are heightened. For children who are sensitive to touch, then any physical contact at this point is like punching them. I cannot tell you how many times our children yelled ‘you hurt me‘ when we tried to hold them during a hijack thinking we were doing the right thing to keep them safe.
  • Raised voices. I get it. The whole situation is super stressful. You might be freaking out (and even dysregulated). But, as above, children who are already sensitive to noise hear even a raised firm voice as unbearable. My children would yell ‘stop shouting at me‘ even when we didn’t think we were and sometimes burst into tears at the unbearable pain that a loud voice inflicted on their super sensitive hearing.
  • Being too close. My children’s bodies ripple with tension that I dearly want to soothe away. But they want to be left well alone. Stay safe and out of kicking or hitting distance if that is what your child needs.
  • Soothing, calming noises. Sounds like the right idea, but if I’ve learnt one thing, asking a dysregulated child to ‘calm down’ is like pouring petrol on a fire in the hope of putting it out. It’s only going to make things worse.

How To Make Things Better…

It’s detective time. What works for one child may not work for another, and what went brilliantly one day, might exacerbate things today. For my children, the generally successful (but not guaranteed) approach is:

  • Breathe. This is about keeping yourself calm. You might put your hand on your stomach and deliberately breathe deeply so that your child might notice your hand rising and falling. But often Amy doesn’t give two hoots about breathing, because she’s not all that keen on relinquishing control.
  • Stay close but do not touch. Depending on the situation, we might be sat outside their bedroom, across the room, or at the other end of a bench. We stay close (to keep them safe) but well out of arms (and kicks) reach, leaving clear air between our bodies. As they calm down, we might gently stroke a hand (but only by moving our hand slowly towards and backing off if they flinch away). You’ll get to know when they might be able to be hugged.
  • Stay silent. Nothing we say is going to make this situation better. Because talking is processed by Cory, and he’s not here. Amy speaks fear and panic only, so the less you say (preferably nothing at all) the better.
  • Hugging Toys. Whilst touching other humans can be triggering, some children can find hugging something cuddly tight to their body (a pillow, coat or toy) soothing. I’ve been known to stroke my daughter’s face with the ear of her favourite cuddly bunny and that’s met with more success than touching her directly.
  • Wait. Time is the most powerful tool you have. I’ve read that it takes six seconds for the adrenaline rush to calm down. That’s your golden window for quiet space. Whilst an amygdala hijack is often instantaneous, the reverse process can take minutes, hours, sometimes days (depending on the trigger, the child, their brain, neurodiversity and more).

Then What?

As the child starts to calm, then having specific extra-calming activities to hand can help to reset their bodies and help them recover from the stress hormones that have flooded their system.

  • chewing (gum or sweets)
  • sucking (particularly thick liquids like smoothies or milkshakes through thin straws)
  • eating (to reset their blood sugar levels which can be disturbed by the fight/ flight response)
  • listening to music, movement, and
  • distraction can all help.

My son (who freezes) would respond really well to Lego as a distraction. I’d rattle the box, chatting merrily to myself about whatever it was I was building. He couldn’t get himself out of a funk, but his natural curiosity and love of Lego would gradually overcome his mood and he would slowly come out from under his duvet, peek at what I was doing and eventually join in, building with me.

Safety Is Your Priority

As Sarah Fisher says in her book “Connective Parenting” the two most essential steps are keeping people safe, and staying regulated. Everything else can wait.

Sometimes you sit outside a room whilst your child throws stuff around (and you pray they don’t up-end the box containing a thousand pieces of Lego). Amy is unpredictable and wild. So you keep your distance and keep yourself safe. And you wait for them to calm. Because they will, eventually. Amy is no marathon runner. She’s a sprinter. Thank goodness.

Yes, I know how hard it is to handle these situations when Amy hijacks them in a busy public place (when a stranger touches her hair, darn them). But knowing what to do, and how best to react, gives everyone the best possible chance of calming down and recovering the situation. We try to make sure we (or the children) always carry fidgets, worry stones and chewing gum for emergencies.

What are your best strategies for helping a child who is dysregulated/ hyper-aroused or experiencing an amygdala hijack? Let me know in the comments

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Image entitled "Six SEND struggles in high school". 1. Communication. A Teacher is giving a long multi-stage instruction. Also saying "why can't you just...". 2. Relationships. Shows a masking child being ignored by other pupils. 3. Stress. Shows a teacher saying "test time", "move seats", "stand up and read to the class", "you're teacher is absent so today you've got me", "hurry up". 4. Concentration. Shows a pupil in front of a board covered in greek letters. 5. Safety. Shows a pupil being tripped up whiilist others pupils laugh and point. 6. Sensory - shows a pupil being poked, feeling overwhelmed by smells and sounds.

Six Reasons School Is Hard for SEND pupils

School is hard. Our two children coped okay in Infants (bit fidgety), started to struggle in Juniors (bit distracted and can’t sit still) but by high school, things became far, far harder. To a point that school became a step too far for our daughter as she hit autistic burnout.

But why? Here are six reasons that SEND pupils find schools to be exhausting, overwhelming and an huge strain on their mental and physical well-being.

1. Communication

Teachers are busy and have a lot of information to convey. They might give a series of instructions in a single breath. But what if you can’t hold that much in your brain at once? Our daughter has a very low working memory, so can cope with one or two things at once (on a good day). Anything more and she simply won’t remember the rest. Too many and she won’t even remember the first thing you said as her brain is overloaded and freaking out. How many teachers have time to give out one instruction at a time and wait for the pupil to process and then complete it? Yet that’s what she would need.

And it’s not just complexity of teacher’s instructions that derails them; communication in the teenage years gets a whole lot more involved. They have to navigate nuance (subtlety), metaphors, ambiguity, idioms, sarcasm and jokes. Obviously this applies to chats with friends too, as teenage relationships become more complex and blunt honesty is less welcomed. Which brings us onto…

2. Relationships

The teenage years are about identity, belonging, fitting in. My daughter tried to be invisible, to avoid negative attention. But it doesn’t matter how much an SEND pupil masks or tries to be like everyone else, students know. They pick up on the differences. Neurodiverse young people say the wrong things, hold themselves differently, copy others as they try to understand the world, laugh at the wrong bits, say too much or too little, have too much or too little eye contact.

My daughter is attending a course for neuro-diverse teens and whilst they are all different (a few cope in school, some self-teach at home, some struggle to say anything at all), the one thing that is universal is that none of them have any close friends. And that sucks.

3. Stress

Many neurodiverse people find comfort in routine, whereas school is unpredictable. A teacher might be absent (and the temporary replacement rarely understands pupils’ needs), the seating plan might change, a test is set unexpectedly, children are asked to pick teams in PE (which is divisive and should NEVER happen), pupils are asked a question, put on the spot or asked to stand and read aloud. All of these things create huge anxiety and stress.

My daughter becomes mute when stressed (selective mutism), yet a senior teacher put her on the spot and then waited patiently for a response. Whilst she became less and less able to respond as her anxiety rose and rose and rose. (This was before her formal diagnosis but when her support plan noted potential neurodiversity.)

4. Concentration

Focusing for almost an hour at a time, in a stressful unpredictable environment is a huge task for neurodiverse children. They have an ability to focus that is almost unparalleled (hyperfocus), but only on the things that hook into their brain and capture their attention. So with topics that don’t grab them, they struggle to focus their energy and enthusiasm. They might lose their place (then have to ask another pupil what was said, incurring the negative attention of a teacher for talking), miss steps out, or just lose interest because they’ve no energy left.

Their desire to escape, to look outside, to cope with overwhelm by stimming or day-dreaming, often takes their brain in directions that aren’t conducive with study. But these are valid coping mechanisms and no amount of shouting or cheerleading is going to change things.

5. Safety

Safety is paramount for all of us. Our children need a solid foundation beneath them, to feel that the world is okay, that it is free from threats, that they are safe and can relax. Despite policies that promise safety, schools are rarely the safe haven that SEND pupils need. It doesn’t matter what your paperwork says, if a student is harassed, barged and picked on before they’ve even sat down for the first lesson.

My daughter doesn’t trust adults (due to trauma as a baby). She takes months to get to know a grown-up well enough to trust them. In a high school with five lessons a day, five days a week, on a two-week timetable, her interactions are too infrequent and too many for her to build that solid relationship.

Then there’s bullying. The name calling. The pupils who touch her or her hair deliberately to provoke an extreme reaction. Who say horrible things about her being adopted or her birth parents. How can a pupil feel safe if they experience things like that on a daily basis?

6. Sensory

Finally, there is the sensory experience of school. Imagine having the volume turned to overdrive on every one of your senses…

  • Smells – from science labs to the food hall, from the smell of deodorants in the toilets or after PE, or being maliciously sprayed with it. The smells can make our children feel physically sick.
  • Sounds – school is a busy place with thousands of pupils. There is a constant onslaught of noise from chatting, chairs scraping, desks moving, books banging, alarms going and more. Then there are teachers raising their voices to be heard above the melee.
  • Touch – for a child who hates to be touched, the jostling as pupils stream from one classroom to the next in a busy corridor, the queues for food at break and lunchtimes, the poking and prodding, the chair kicking, those who deliberately touch her hair for a reaction. Never mind the scratchy uniform and shoes…

Everything Is Wrong

When my daughter or son were struggling with school, when it all became too much, when they sobbed or shook in their beds unable to move or attend, I’d ask them gently what’s wrong? I wanted an easy answer. Something I could solve.

Invariably their answer was EVERYTHING, which I thought less than helpful.

It took me time to fully understand them, their bodies and brains, and get to grips with their individual needs. To unpick their experiences in school. To wake up to the truth in their answer.

For them, nearly everything is wrong about school.

And however much school make minor adjustments – like ear defenders or letting them leave class early to avoid some of the crush – most schools are inherently overwhelming, overstimulating, overtaxing. They’re an experience that is just far far too much for some of our children.

Our children were born a certain way and they can’t rearrange their bodies and brains to fit a system that causes damage (to their self-esteem) and threatens their well-being (through constant crippling anxiety). It’s time for things to change. For government and local authority to truly understand the special educational needs and disabilities and design (and crucially fund) a system that fully supports their needs.

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A large 12 decorated with candles, a map of the UK, the seaside, a bunny, a dog, and the image from "And Then There Were Four" which is four people cut from paper.

We Are Twelve (Years Old)

Twelve years ago, our children came to live with us. The two of them (brother and sister) came and made us a family of four.

How has it been twelve years already?

We still remember that first night, where we thought they’d gone to bed exhausted and congratulated ourselves until our son woke in fear and cried for ages. We tried everything until Andy found a spot half-way up the stairs where he settled. We’ve no idea why, but we suspect it was sea of beige that had no reminders of the fact he was somewhere different, new, strange.

The Toughest Year Yet

Those early months were tricky – mostly due to the constant demands and utter exhaustion that dogged our steps and brains. Oh, for the simple joy of swinging them higher and higher whilst they blew raspberries at each other, giggling their heads off. Nowadays their muted joys involve TikTok and three-hour baths.

The last year has been the hardest yet. Our daughter hit autistic burnout and has taken a very long time to recover. There were weeks when she barely left her bedroom; her mental health was precarious and her anxiety huge; it impacted all of us.

School is no longer part of her life; it’s proved too much, and we’ve had to adjust to a new normal. Our son, amazingly, has kept going, although his anxiety sometimes stops him in his tracks.

So Much To Learn and Unlearn

For ten years, we viewed our daughter’s struggles through the trauma lens. Yes, she struggled with sensory overload and emotional regulation, but that was trauma wasn’t it? Eighteen months’ ago, she was diagnosed with ADHD and Autism Spectrum Disorder and we hit a new learning curve; discovering more maps to her brain. Whilst also saying “Oh” as we realised why she does what she does. We also believe she has ARFID.

Since every autistic person is different, we’ve become detectives. Observing her body language (she’s often unable to express her needs), her stimming, her movement or stillness, her face, eyes, the tension in her body. We have to hear the words she doesn’t say.

We suspect our son is also neurodiverse, and whilst the professionals assure you that children don’t need a diagnosis to get the support they need in school, that’s not our experience. He is not even on the SEND register as school still tell us that his needs can be met by ‘Quality First Teaching.’ But that’s next year’s battle…

Goldilocks Life

We search for the sweet spot. Not too overwhelming that they hit sensory overload (bowling on a Saturday afternoon proved impossible, whereas early Sunday morning had been fine). Whilst encouraging them out of their comfort zone.

Avoidance is a strategy that’s all too easy to fall into. The world can be an utterly overwhelming place, with strangers, sensations, noises, lights and more to deal with. Yet we don’t want to batten down the hatches and live like antisocial hermits. Because whilst that’s an attractive option (especially for our daughter), it won’t help us learn, grow, and refine coping strategies.

A Meal Out To Celebrate

We went out for a meal. We’ve gone out every year, and sometimes (before we understood their specific needs), it wasn’t easy, fun or a celebration. There would be stress, anxiety, an inability to eat, an urge to leave almost the minute we arrived. Several meals ended up with frowns, sulks, stomping and mutterings about why bother and we should’ve stayed at home.

But we’ve learnt a lot. We’re honing in on the Goldilocks spot. By going early, we avoid the noise and numbers of strangers overwhelming them. We go somewhere we’ve been before, where there is something they both like to eat. We’ll encourage them to take fidgets, headphones, to chew on ice, to suck on straws, to nibble to avoid hanger, to stim on their phones.

I’ll be able to assess my daughter’s level of anxiety from what she’s wearing: on a great day, my daughter will pick a fab outfit with tights, short skirt, something that yells “Look at me”. She’ll slay (but hate me saying that). If she’s feeling anxious, it will be baggy tee-shirts, a huge fleece, baggy trousers. It’s her armour, and it tells me that she needs support.

We know how to read our kids. When our daughter starts to struggle, she’ll shrink inwards. She might struggle to eat, as she’ll be using all her energy to stop herself running away. We won’t stay long (maybe an hour). And afterwards, we’ll allow both of them to stay in their safe places if they want to decompress.

How Did It Go?

We had a good time, the only hiccup being we all ate too much!

Eldest sat in a corner of the room (good spot), using her headphones to listen to music (I could tell she was anxious as she was part-baggy). She thumbed her phone and popped her head up occasionally. She smiled. She laughed (at whatever was going on online). But (massive win) she ate a burger from the adult menu for the first time and demolished most of her meal.

Youngest didn’t feel the need to stim or fidget. He got a bored, so we played word games (20 questions) as we waited for food to arrive, which was great fun and taxing as we had to guess the cartoon character (thankfully Andy got SpongeBob).

There was no stress. No struggle. No overwhelm or meltdowns or raised voices. Not once did I think it would have been easier/ happier to eat pizza at home.

Our life might be quite a long way from what we imagined, but we’re finding our way, together. We love them to Ikea and back, and we’ll do everything in our power to make sure that they have the best life they can, given the way their brains and bodies are wired.

Sometimes it’s a bit rough around the edges. Sometimes we get it horribly wrong. Sometimes we forget, or fall back into Tradiitional Parenting territory.

But we’re still here. We’re still together as a family. And that is worth celebrating.

Happy Familyversary to Us.

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