Author: Kate Kleinau

All humans have a basic survival system designed to protect us called neuroception.

It is constantly monitoring if we are safe or if we are under threat.

PDA brains have highly sensitive neuroception, it is very easy for their bodies and brains to go into a fight, flight, freeze stress response.

If we imagine encountering a vicious dog, first our breathing and heart rate would increase to get more blood and oxygen to our muscles, our sensory systems would become hypervigilant to our surroundings. Our first instinct might be to freeze, maybe the dog won’t see us. If that doesn’t work, we need to be able to run away to safety (flight). Then if we can’t out run it, we need to be ready to fight or maybe even play dead (shutdown).  Another option might be give the dog food in the hope of making friends to prevent it from hurting us (fawning).

This is the kind of threat response that is happening for our PDAers, but instead of only experiencing it in life of death situations, they are experiencing it every time they are met with demands or a loss of autonomy.

PDA brains have a pervasive drive for autonomy, a need for control, a need for safety.

The behaviours that we see in our kids are stemming from a neurological response that is out of their control. Their body and brain are literally responding as if their life depends on it.

Our job as parents is to create environments that allow our kids to emerge out of their threat response.

To find out more about neuroception and the behaviours that we see in our kids, I highly recommend…

• The Pocket Guide to Polyvagal Theory by Stephen Porges.
• Beyond Behaviours and Brain-Body Parenting by Mona Delahooke.
• Raising Kids with Big Baffling Behaviors by Robyn Gobbel.

Gauging where our kid’s capacity is at on any given day, or within any given moment comes down to attunement between us and our child.

It is unlikely that our kids are going to be able to tell us eloquently with their words. Often, they tell us through their behaviour.

Each of our kids will have individual indicators that tell us how they are doing, how close they are to hitting a point of overwhelm.

Some signs will be more subtle than others. Through careful observation and reflection we can start to cue into those signs.

These are some that often come up at our house…

Heightened sensory sensitivities: Sensations can become intolerable. Our PDAer will say things like, “Carry me to the swings, I don’t want to walk on the wet grass.” “I’m not wearing sunscreen.” “I’m not going outside, it’s too hot” “Stop talking it’s too loud.”

Increase in control: This looks like our PDAer being very particular about who can assist, with what, and in what manner.  It becomes more difficulty to share and negotiate with siblings. Equalising can ramp up, there might be an increased need to be first down the stairs, through the door, buckled in the car, to get dry and dressed after getting out the pool etc.

Changes in communication: Sometimes our PDAer withdraws into a character, making animals noises or baby talk, sometimes he might go completely quiet (situationally mute), sometimes we see nervous laughter or an increase in stimming (singing, repeating phrases over and over or noises like humming or squealing.)

Changes in movement: Often movements start to get bigger and more erratic, to outsiders it looks like silliness. Our PDAer becomes less reliable with interacting gently with our pets. If heading towards shutdown we see a change in body language, becoming completely slumped on the couch or lying on the ground curled up in a ball.

Heightened emotions. Becoming quickly teary about things going wrong or having to wait.  We see a reduced ability to problem solve or negotiate and a shift towards making threats.

Tuning into the early warning signs gives us time to lower demands, remove stressors, collaborate and redirect before reaching the point of meltdowns or shutdowns.

We won’t get it right every time, we reflect, we learn, and we start being able to mitigate situations from escalating further.  

Give yourself and your child as much grace as you can muster while you are figuring it out.

I get it.

It is no small feat to remain non-reactive towards a child who is displaying big behaviours.

When we can logically understand what is going on for our kids, it helps us to reduce the amount that we are triggered as parents. This allows us to have the best chance at responding with empathy, rather than becoming resentful, frustrated, angry or despairing which often leads to us becoming triggered ourselves and responding in ways that don’t align with the person we want to be.  

We have to start from Dr Ross Greene’s core belief that kids do well if they can. Our kids are not bad kids. They know right from wrong. They want to be able to connect with us.

We can view behaviour as communication, it gives us clues as to what is happening in our kid’s nervous system. As Robyn Gobbel says, nervous systems are either in connection mode or protection mode.

Behaviours that come out during protection mode aren’t personal, they tell us that they are having a hard time, they are the presentation of our kid’s disability, they are not a reflection of who they are as a person.

Controlling, making demands on us, threatening, swearing and physical aggression, are all high-level signs of escalation in PDA kids. In the moment they don’t have the capacity to react in a different way.

One thing that helps me, is to translate in my head whatever my PDAer is saying or doing, I imagine him saying things like “Mummy, I’m feeling really overwhelmed” or “Mummy, I need help.” It helps me to stop and take a deep breath and remember that he isn’t in control right now and that he needs my support to feel safe again.

If things haven’t gone so great, remember that we are human, we can give ourselves compassion, we can repair, we can chalk it up as a learning experience and do the work to back track and figure out what we might change to mitigate the same situation from occurring again.

We do the best we can.

When parenting a child with a hidden disability, who requires extensive supports and accommodations, and needs a style of parenting that is radically different to the norm, we are going to encounter judgement about the decisions and choices that we make.

Sometimes judgement comes from people who don’t understand and sometimes they are the thoughts that creep into our own heads, judging ourselves….

If these same judgements were applied to a child with a physical disability or medical condition it would be considered outrageous.

We wouldn’t say to a child in a wheelchair that they just aren’t trying hard enough to walk. That they need to build resilience. We wouldn’t think their parents are being difficult when they ask to meet up in an accessible location.

We wouldn’t tell a child who has had a brain injury that they are treating us like a slave when they need our help. That they have to learn to cope in the real world.

We wouldn’t say to a child with epilepsy that they will be rewarded if they don’t have a seizure and we certainly wouldn’t shame them for their actions while they were having one, actions beyond their control. We wouldn’t say the parent is drugging their child for giving them the preventative medication that they need.

We wouldn’t say to a child with asthma that they can have their puffer once they have finished their work or that they just need to push through their breathing difficulties.

We wouldn’t get frustrated with a child with allergies if they sneezed or came out in hives. We wouldn’t continually force them into the same environments or make them eat the same foods that caused the reaction, over and over again, reasoning that it’s a tough love approach that is needed.

Of course we wouldn’t do or say these things.

And yet, having worked with hundreds of PDA families, of kids whose disability is often hidden, these are the types of comments that come from people who don’t understand.

These are the comments that catch us off guard, that knock our confidence, that make us question ourselves.

PDA kids and their families require the same level of empathy, compassion and support.

If you have encountered these types of comments I want you to know…

You are doing an amazing job supporting and advocating for your child.

Your child will do things when they are ready and able, they don’t have to be continually forced beyond their comfort zone.

The real world is hard enough, make your home the sanctuary where they can come to rest, recharge and be completely themselves.

You are enough.

Keep going.

I have been reluctant to share this with the greater world because I wasn’t sure if those receiving it could be trusted to hold it in the way it is intended. However, here I am sharing it because within the groups of mums I work with it has often deeply resonated, and I hope that it lands for those that need it.

A conversation came up in one of the first groups I ran, 2 years ago now. A beautiful mum has graciously allowed me to share one of her reflections. She said, “For me PDA parenting feels like a super strong rip in the ocean. That the more we fight the PDA, the more exhausted and dangerous it becomes. But once you come to understand PDA, learn strategies to work with it, then you can slowly work with the rip and guide yourself, and your child, to a safer and calmer stream.” Ruth Tait

It is an analogy that has stuck with me ever since and I wanted to share some further reflections.

Being caught in a rip is a situation that no one would choose to be in, and the feelings are often the same, overwhelming fear and anxiety for your child, yourself and your family.

You can use all your energy fighting against it, trying to get back to where you started, perhaps trying to return back to what life was like before burnout or back to the path of what you had imagined life would be like.

You might try to change your child, try to mould them to fit systems that aren’t suited to them. You might try to maintain your career and uphold all the societal expectations of what parenting should look like; what success looks like.

The more we fight, the more exhausted and dangerous the situation becomes.

From the outside, other people don’t necessarily know that you are caught in a rip. It’s hard to see. They might wonder why we are moving further away, distancing ourselves. Our PDA kids can be incredible maskers. Sometimes people have to experience the rip themselves, firsthand, before they truly realise the situation we are in.

However, once we come to understand PDA and learn strategies to work with it, we can stop fighting, we can catch our breath, we can find a safe place to come ashore.

It might be entirely different to the place where you started, the place you had imagined.

It’s OK to grieve and process the many losses that come up in this journey. Those losses are real and grieving them doesn’t mean that you don’t fiercely love and accept your kids.

At some point we have to find strategies to work through the negative thoughts when they come up. If we get stuck lamenting our situation, it will never be possible to find the joy that is right in front of us.

It is not easy. It takes time, courage, wisdom, and intention.

It is possible to find a life where we are not overwhelmed by the fear, worry or shame and can rest in acceptance, compassion, and empathy.

We can slow down and enjoy a simpler life and find ways within it to be fulfilled.  That is where you can find joy, contentment and peace.

Just because it wasn’t what you imagined doesn’t’ mean it can’t still be beautiful.

I don’t share this to be dismissive of the struggle. I share it to offer hope for the future, that in a few years you will look back and be so proud of yourself and your child, for how far you have come.

Sometimes our hardest times are the catalyst for the most profound growth.

To the mum who first shared this analogy with me, Ruth, we thank you for your wisdom.

When parenting a PDAer there is so much inner work to be done in challenging our beliefs and accepting a different path to what we had expected. Education has been one of the biggest and most triggering aspects that our family has had to reconsider.

I am not saying that this has to be the path for your family, everyone’s journey is going to be different and that is ok.

Our beliefs and decision making have changed as we have learned more about our PDAer’s needs, had time to accept the extent of those needs, realised that school is not the only place for kids to gain an education, creatively found ways that we as parents can earn an income and complete meaningful work around homeschooling, and acknowledged that there is not only one way that our life is supposed to look.

The progression has looked like this over the last 4 years…

• Our child will attend the local Kindergarten and attend our State catchment school.
• Our Autistic child will be more supported at a small, Private Christian school.
• Our Autistic PDA child will be more supported at a very small, Independent school that encourages self-directed learning.  (Whilst also knowing in my gut that homeschooling will likely be our path, it feels terrifying.)
• I see how self-directed learning could work, but it’s not what I had planned, it’s daunting and highly triggering, especially when others bring it up.
• I’m confident that home-based, self-directed learning is the best fit for our whole family.

If you want to read more this was the journey through those shifts…

We started our son at a small family daycare setting just a couple of mornings a week. The educator was inclusive, experienced and highly attuned, the sensory environment aligned with his preferences and it was a small setting with only 4 kids who he developed lovely friendships with. We were on track for the idea I had pictured in my mind that our child would attend our local kindergarten and mainstream school.

When our son’s neurotype was confirmed as being Autistic, we delayed his entry to school by a year to allow more time for him to be ready. We also considered that the local Christian school would be able to offer a smaller and more supportive environment.

Daycare went well for a year, however a series of changes lead to a loss of trust and he no longer felt safe there. Distressed behaviours accumulated over a few months. It became increasingly more difficult to get there and on the days he did we would often get phone calls to collect him early and I would dread the reports on pick up. There came a day when we said, “No more.” We stopped daycare. Burnout was the catalyst for discovering that our son fit a PDA profile.

I quit my job and didn’t think I would ever be able to return to my profession. I grieved. I was terrified at the concept of our PDAer’s schooling being on my shoulders and I was living and parenting from a place of immense fear. A few months later I was in carer burnout too and I couldn’t see how home schooling could ever be sustainable long term.

Those low points where the catalyst for making some radical changes to our lives. We put the supports in place to stabilise our PDAer’s nervous system. I did the work on myself with a counsellor. We adjusted and reimagined how paid work could fit around the possibility of homeschooling.

We looked at alternative school options but it was met with extreme anxiety from our PDAer. We knew in our hearts that it wasn’t going to pan out. We gave our PDAer a say in the decisions that impacted him. We told him that some kid’s brains learn best at home and some kid’s brains learn best at school and that we trusted him to be able to choose what was right for him.

Then there came another day that stands out in my mind. I remember the exact moment when I realised, this could work, that self-directed learning could work. My PDAer and I had a morning, just the two of us, we were on the other side of burnout and we had managed to get out for a bush walk to the creek. He was so calm, so happy, so interested in learning about everything around him. That was the day that I actually believed it.

2 years on from that day and I have continued to be amazed by how much our PDAer can learn when his nervous system is regulated and when I put my trust in him to learn in his own way and in his own time.

There is acceptance and acknowledgment that life can still be really beautiful when we let go of our preconceived ideas of what it is “supposed” to look like and find a new way.

I regularly get asked about screen use and recently I have been reflecting on how utilising screens has evolved at our house. It definitely took us time to adjust our mindset.

A snapshot of where we started to where we are now:

• Screens are detrimental to child development and should be completely avoided.
• Screens can be used with strict limits around when and for how long.
• Relaxing screen limits feels awful, we don’t value time spent on screens.
• Screens are a valuable tool, we can see the immense benefits for our family.
• Children can have an active role in self-managing their screen use.

If you want to read on, this is how we got there…

There is so much information out there about screen time being detrimental for child development. I used to buy into this. When our PDAer was little, we actively kept screens to an absolute minimum.

When our daughter was born, screens became a helpful coping strategy. I would set our PDAer up with a movie when I needed to feed and settle the baby.  Even though there was more time watching screens, we still held tight around how long he could watch for and when. I can recall some real doozys of meltdowns around holding these limits.

When our PDAer hit burnout we relaxed all limits around screens but it was definitely what Amanda Diekman would call a fake drop (check out her book Low Demand Parenting). We were really fearful about it and held a lot of shame. We couldn’t help but wonder if it was the right decision and often grappled with the perceived judgement of others.

Even though we had loosened our limits; we didn’t value the time our PDAer spent on screens and we still held the belief that he should be doing other things. There was still lots of discussions and negotiations about when he would turn screens off and engage in something else.

Slowly, over a period of about 6 months, we started to see the benefits of screens and our mindset started to shift. We leaned in more, we showed interest in what our PDAer was doing on screens. We stopped negotiating as much. We would get great ideas from some of the shows he was watching which we would then re-enact in real life. Whilst we would strew (set up interesting things within eye-shot) and make comments about things that might capture his interest, these were offerings that could either be engaged with or declined. We also stopped making a big deal around turning the screens off to transition, we just left them on in the background while we did other things.

Instead of focusing our energy on “getting our PDAer off screens”, we worked on trust, connection, regulation and dropping demands in other areas.

And then something amazing started to happen. As our PDAer’s capacity increased, he started to rely on screens less and less and started to re-engage with non-screen-based interests. Instead of us needing to strew and comment, he would spontaneously suggest ideas, pause his show and run off to initiate them.

What we have come to notice is that the amount of time our PDAer spends on screens is an overall indicator of how regulated his nervous system is. In times of burnout, he relies heavily on screens. In stages of stability, he is able to self-manage his screen use.

At our house we now view screens as a valuable tool.

• They assist to reduce the demand around eating.
• They are a regulation tool, especially if my attention needs to be shifted elsewhere. (e.g. household tasks, phone calls, helping a sibling or meeting a need of my own)
• They can reduce the demand to wait and can be especially helpful for essential appointments.
• They can be a gateway to accessing special interests and learning.
• They can be used to re-direct and de-escalate situations quickly.
• They can serve as a distraction and increase tolerance for self-care tasks that he finds uncomfortable (e.g. nail cutting, hair washing, hair cutting)
• They can be used to create connection when we play, research, watch together, or re-enact what we see in real life.
• They build social connection with friends who also share the same screen-based interests.

There is no longer shame and fear. There is liberation, peace and acceptance that this is what works for our family.

Letting go of deeply held beliefs takes time.

Be kind to yourself while you figure it out.

We have been taking our guinea pigs with us to the park lately.

The guinea pigs help our PDAer out a lot…

With transitions, with staying regulated, with self-directed learning and as a conversation point.

I remember one day in particular….

We had arranged an afternoon playdate with a friend at the park.

Afternoons are a less ideal time of day for us so we went in knowing it could be on the tricky side and tolerance would be lower.

Our PDAer started stalling when it came time to leave.

He started suggesting we needed to finish playing a game first, have a swim first, have a snack first, before finally saying that maybe he just wants to stay home and that we should cancel.

There are many days where I would drop it.

Where I would just cancel.

Where getting out of the house is just too hard.

But on this day, my daughter and I both really needed to get out of the house, and I decided to see if we could get there with more accommodations.

We talked about how sometimes his brain wants to do things, but it can’t, and I wondered if there might be a way I could help.

I suggested a different way of getting to the park, riding bikes or driving instead of walking. I suggested taking favourite toys. I suggested taking screens.

All of these were falling flat.

Then I suggested we could take the guinea pigs in their carry cage.

We could show them the park and pick dandelions and grass for them to eat.

This got his buy-in and he excitedly said, “Yeah, let’s go!!!”

I’ve never seen anyone take their guinea pigs to the park before.

The thought that it’s not the “done thing”, that guinea pigs should stay at home, almost stopped me from suggesting it.

His friends thought it was the best thing ever that the guinea pigs came to the park.

Sometimes when we let go of the “shoulds” it turns out to be wonderful.

What a beautiful afternoon we would have missed out on if I’d let the “shoulds” get in the way.

When our kids display big fight/flight responses it can be exceptionally triggering for us as parents.

Parents say to me, “Surely this type of behaviour can’t go unpunished?”

This might be unconventional, but my belief is that kids shouldn’t be punished for what is an autonomic nervous system response. It is not under their conscious control.

If we take it to the extreme, it is like punishing someone who has allergies for sneezing.

Kids do well if they can.

Our kid’s behaviour is communicating to us that they aren’t coping with the demands and expectations being placed on them.

Yelling, threats, consequences, trying to rationalise are all going to escalate the situation further and perhaps also lead to deep feelings of shame and disconnect.

So what can we do…

Instead of thinking, “How can I get my child to stop hitting/throwing things/the verbal attacks”, we can switch to, “How can I make my child feel more safe. How can I help to regulate their nervous system.”

Felt safety is what our kids need to get back into their ventral vagal pathway of their nervous system. That is where they need to be to think clearly.

Our kids know right from wrong. They have to be regulated enough to access their rational thought, their judgement, their problem solving, their ability to wait and be flexible.

Long term, we want our kids to increase their awareness and have ownership over managing their energy levels, however, to begin with it starts with us.

• We as the adults can reflect on the situation and make proactive changes to better support our kids to mitigate the triggers.

• We can notice the early signs that communicate to us that we need to stop everything and help with regulating.

• We can model how to repair, how to make apologies, how to make plans so that our bodies and brains stay in control.

• We can comment about what activities help ‘fill our cup’ or ‘recharge our body battery’.

• We can share stories of times when we have felt overwhelmed and what we noticed, how it felt, what we did.

• We can debrief by talking out loud about challenging situations and how we might support them better next time.

• We can reflect on previous instances together and collaboratively problem solve plans ahead of time.

• We can provide information about how our brains work.

Our kids are watching and learning from us.

We are re-wiring their nervous systems. When our kids are constantly in fight/flight/freeze responses, those neural pathways get reinforced over and over again. They become more dominant. The escalations appear rapid.

Our kids need us to help them break out of the cycle. We can start to help them reinforce more adaptive pathways. We start to create more time between a trigger and the reaction.

This is the hardest and most important work we will ever do.

For our PDA kids we know that demands trigger a stress response in their nervous system.

If they encounter expectations and demands beyond what they can cope with it can trigger a fight/flight/freeze/fawn response. 

Every family has to work out where the balance is for eliminating or reducing enough demands so that their child can stay within their window of tolerance and have enough capacity to complete the things that they either want or need to do. 

This is what lowering demands looks like at our house.

Brace yourself, it looks very different to anything you will find in a parenting book.

Lowering demands at our house looks like:

• Co-sleeping next to a parent.

• Sleeping in day clothes instead of changing into pyjamas.

• Choosing what he wears and when he gets changed.

• Only wearing shoes and socks if absolutely necessary.

• Where possible, picking early mornings and late afternoons to go out in the sun to reduce the frequency that sunscreen is needed.

• Skipping hair washing and hair brushing.

• Cutting nails only if they are bothering him.

• Cutting his hair while he is sleeping. (He requests this if his hair starts go over his eyes.)

• Respecting sensory preferences.

• Aiming for teeth brushing once a day.

• Bathing or showering when he chooses.

• Having control over what and when he eats.

• Control over how he spends his time and the places we go.

• Reducing the amount we talk. We tend to comment on what is happening right now, in-the-moment, and often wait to chat until our PDAer engages with us.

• Not attending face-to-face therapies. We utilise parent consultations instead.

• Homeschooling using a self-directed learning approach.

and the list could go on.

As with everything that I write, this is what works for our family.

There is so much rationale underneath all of these, much more than can be contained in a short post.

This is simply an example of what a low demand lifestyle can look like.

It might be helpful and validating for you or you might have a completely different experience and that is ok.

Accommodating our PDAers is a constant problem solving/recalibrating process.  

Early on, the biggest thing that stood in the way of embracing a low demand lifestyle was my own mindset.

It’s time and intention to let go of the ‘shoulds’.

The pre-conceived ideas around how we should be parenting and what our kids should be doing.

They can get in the way of staying focused on what works right now.

It takes courage to parent differently, to parent the way our kids need.