Author: Kate Kleinau

A good place to start with helping our kids to become more regulated is by identifying triggers. Having awareness of these can help us to prioritise where to start dropping demands.

Sometimes it can be tricky to pinpoint because the thing that triggers our kids into a meltdown (fight/flight/freeze state) might just be the straw that broke the camel’s back and can be an accumulation of things. There might be times where you have to consider multiple things that have happened in the lead up.

Some examples of general triggers at our house:

• Sensory overwhelm (our PDAer is particularly sensitive to noise and touch)
• Situations with high social demands
• Not having my full attention
• Being tired
• Having to share
• Being told ‘No’
• Not being first
• Having to wait

The next step is then picking one of these at a time and narrowing down when these scenarios predictably come up.

You can then decide…

• Is this something that I can accept that my child isn’t able to cope with right now and completely remove or avoid?
• Is this something I can reduce demands around by changing things up and making accommodations?
• Is this something that can’t be changed; however, what you can do is accept that it is going to cause dysregulation and account for it by trying as best as you can to bolster tolerance in the lead up and allow for recovery time afterwards?
• If the thing that is triggering meeting the needs of another family member, you might have to get creative in how to meet that need in an alternative way.

An example of something we have identified, accepted, dropped and then found alternative ways to meet needs around is family dinner.

• I used to push for dinner at a set time with screens off, sitting at the table together, eating the same meal.
• We put so much effort into this for a long time and it was just awful.
• When I thought about it, I was creating a situation with high social and sensory demands and expecting my PDAer to meet them at a time of day when he was exhausted.
• I was also holding the belief that good families eat dinner together, and I wanted to be a good family, but really what I was wanting was to feel connected as a family. 
• We have accepted that it is better for everyone to have their individual needs met at dinner, which also allows everyone to remain calm in the lead up to bedtime. This can mean eating at different times, eating different meals, sitting in different places and watching iPads whilst eating.
• As for my need for connection, we have created opportunities to have 1:1 time with each of the kids at the extremes of the day, my husband and I have time together once the kids are asleep, and we can get out as a family for little adventures on the weekends.
• Ultimately, we have come up with a solution that works for our family. A solution where we have dropped demands around dinner time, created a night routine that allows the whole family to stay more calm, and upheld our need for connection.

Do you have a demand that you can…

• Identify
• Accept
• Accommodate
• Account for
• or find an alternative way to meet needs?

I recently wrote a blog about what do when everything triggers your PDA child. Dropping demands on its own will get you a long way, but it is also crucial to increase the amount of time your child spends engaged in regulating activities too.

Casey Ehrlich talks about 4 ways to regulate our PDAer’s nervous systems.

1. Co-regulation: Undivided attention from a safe, trusted person.
2. Engaging in a special interests.
3. Incorporating novelty: This gives our kids a dopamine hit. Dopamine is the happy hormone for our brain. 
4. Screens: These can be helpful for the times when 1:1 co-regulation isn’t available.
5. I’m also going to separate out calming sensory input as a stand-alone 5th category.

Often these components don’t occur on their own, usually it’s a combination of a few done all together at once.  For example, choosing a novel task, that is aligned with a special interest, and doing it in the presence of a safe adult, is a pretty ultimate combo.

Specific regulation activities are going to look different for every child. These are a few examples that work at our house with our 5 year old PDAer.

Playing Monster Trucks and Lego. These are our PDAers current special interests. Spending 1:1 time together, immersed in these interests, is always guaranteed to be regulating. It can be as simple as reading a Monster Truck book together, racing Monster Trucks down the driveway, or creating elaborate Monster Truck arenas with various challenges. For Lego, it might just be me observing as he builds a new set step-by-step, or it might be me helping find pieces for a unique design that we can then use as part of a pretend play game. It might even be watching monster truck or Lego Youtube videos together and then re-enacting what we have seen.

Playing swing kick. We throw a ball or stuffed toy up in the air for our PDAer to kick back to us as he swings. Our PDAer absolutely loves the vestibular input he receives from swinging. This alone is regulating in itself. Adding in an adult to create a game makes it even more effective and novelty can be included by changing it up to add new variations of the game.

Adding water to the sand pit. We often start out by digging to create something like a fort or dam wall. Our PDAer then chooses in what way he will incorporate water.  Some days he creates a dam with channels for the water to flow down, some days we builds a sandcastle with shells hidden amongst it and ‘melts’ away the sand with water to reveal the hidden shells, other days he creates a current with the hose and we float boats to deliver little treasures to each other.  Digging provides proprioceptive input, being outside and the sound of running water is calming for our PDAer. Each instance we change up the game which adds novelty, sometimes we include Monster Trucks, and the presence of an adult makes it a lovely opportunity for connection.

Playing ‘Boulders’. Boulders is our latest rough and tumble game. Our PDAer lies on the couch with a cushion on top of him and pretends to be stuck underneath a boulder. I then playfully squish him, whilst attempting to pull the heavy boulder off but it keeps sliding back on top of him. He then thoroughly enjoys swapping jobs and squishing me. This activity incorporates deep pressure touch, which is calming for our PDAer, and a beautiful playful interaction with a safe adult.

Making ‘Potions’. We find any type of experiment has huge novelty factor out our house. Often, I can set up matching equipment to make this work when I have both the kids. An activity that we are getting a lot of mileage out of lately is making pretend potions. I put out water, food colouring and a range of bowls, cups, spoons, scoops and droppers and the kids mix and pour to their hearts content. They can then change it up by adding in things from around the yard like leaves, berries, sand, sticks, seed pods and herbs from the garden.  

Figuring out what activities are regulating for your child can take some trial and error. We have to tune into our kids and notice what the specific conditions are that make particular activities regulating. For example, our PDAer loves jumping on the trampoline and can find this soothing if he does this on his own or with a safe adult. However, jumping with a sibling or friend is guaranteed to have the opposite effect and end up being dysregulating.

What are your child’s go-to regulating activities?

Drop them in the comments below, it might just be the inspiration that other families need.

Working out your PDAer’s window of tolerance can be tricky.

At our house it has taken lots of trial and error and really tuning into our PDAer. We have learned what the early signs of escalation are that tell us it’s necessary to pull back and focus on regulation. And we have also noticed the signs that tell us his tolerance is high, the times we can encourage him to reach up to additional demands.

We essentially have 3 tiers of expectations at our house.  The set of expectations that we pick has to line up with our PDAers window of tolerance, the amount of energy he has available to him in any given week, day or moment. The expectations in these tiers will look different for every child and change over time but this is what it looks like for us at the moment.

Tier 1: Burnout and recovery

During periods of burnout, we literally bunker down and are in a crisis management situation. The priority is allowing time for our PDAer’s nervous system to recover.

• We drop absolutely everything possible and only hold boundaries around safety.
• No limits on screen time or around food.
• No mention of getting changed, bathing, teeth brushing.
• No expectation to leave the house.
• No expectation to be able to play safely with a sibling while I get things done around the house. 

Even now, when we are in a stage of stability, we still go back to this tier as needed. Sometimes it’s necessary by the end of the day. Sometimes we stick here the day after a big outing. Sometimes it’s necessary for the whole week after we get back from holidays.

Tier 2: Stability

During stages of stability, we have loose/flexible expectations and we can decide in-the-moment if we are going to hold, negotiate or let it slide. On the let-it-side days we do our best to lead with empathy and acceptance rather than frustration and disappointment. Just because an expectation isn’t held today it doesn’t mean it’s forever. Our kids do well if and when they can.

These are examples of some of ours:

• Changing into clean clothes before we go out/ other days we accept he is going out in clothes he’s had on all week.
• Wearing sunscreen/ other days we negotiate a shady option, wearing a long-sleeved shirt or having a short play in the sun.
• Brushing teeth once a day/ negotiate to do them in the morning or let it go completely.
• Sticking to limits around treat food/ other days we say ‘yes’ to additional requests.
• We can get out of the house and spend time in safe places with safe people/ Other days we shorten the trip or divide and conquer (it might be that half the family goes out).

If we know we have to stretch for something like an appointment, a sibling birthday party, in preparation for having to be looked after by other people, or going on holidays. We often drop all our loose expectations pre-emptively in the lead up to bolster tolerance and then again afterwards to allow for recovery.

Tier 3: Stretch

On days where we gauge there is more tolerance we can stretch.

We encourage or indirectly suggest activities and they might be met with a ‘Yes’. We go in knowing that it’s still completely acceptable that our PDAer opts out.

For us stretch days might include:

• Managing 2 things in one day. 
• Short shopping trips. 
• Play dates with less familiar kids or where I want to talk to other adults. 
• Friend’s birthday parties.
• Self-care tasks such as bathing, washing hair, haircuts, cutting nails.
• Learning opportunities.

When we are parenting PDA kids, we have to be constantly monitoring where our kid’s capacity is at. Figuring out the balance isn’t easy. It takes lots of trial and error but with time it does get easier. You start to pick up on the cues earlier, you prevent more meltdowns, encounter less periods of burnout, and for the inevitable meltdowns that you can’t prevent, the recovery becomes much faster, it becomes easier to bounce back to that stage of stability. 

I see you…

I see you leaving your career or making drastic changes to a role that can fit around life.

I see you working on yourself in counselling.

I see the monumental effort it takes to keep your own nervous system in check.

I see you giving up your hobbies.

I see you weighing up if the fall out is worth having some time away. 

I see you monitoring your child’s needs so closely, every minute of the day.

I see you packing all the things to make sure an outing is successful.

I see you cancelling on a much needed catch up with a friend when it’s too hard for your child to get out of the house.

I see you stumbling over your words as you figure out the right ways to advocate for your child’s needs.

I see you struggling to let the unsolicited advice and judgmental comments slide.

I see you researching and learning.

I see you putting in the effort to re-direct, diffuse, play, guide and encourage.

I see you filling out paperwork, booking therapy appointments, making meeting times.

I see you struggling to be believed and understood.

I see you making sure siblings have a chance to feel special too.

I see the unconditional love you have for your kids.

I see the monumental personal growth.

I see you embracing a new way of life.

I see you prioritising what is truly important.

I see you keeping your own tally of wins.

I see you doing the most important work of your life.

A life where your kids feel safe, feel loved, feel fulfilled, and feel proud of who they are.

I see you.

Let’s talk about triggers

One of the biggest ways to assist our PDA kids to become more regulated is to recognise and reduce the things that are triggering stress. 

It sounds simple right?

But, what families often say to me is that everything is a trigger.

This is one of my favourite visuals. It’s from the PDA Society UK.

Often lots of our PDA kids are hovering right up in that orange zone where they can appear highly controlling and it only takes the smallest thing to tip them over into a fight/flight/freeze response.

When our kids reach the point of being in a stressed state, in the moment the best we can do is have a plan for keeping everyone safe. We have to go further upstream in order to mitigate those stress responses from occurring.

Sometimes it can be tricky to pinpoint what the true trigger is. What caused a meltdown, might just be the straw that broke the camel’s back.  It is the cumulation of demands that have built up over time.

Sometimes we have to consider all the things that have occurred in the lead up, over the past day, week, or period of life to really figure it out.

If your child is constantly escalated and you can’t pinpoint predictable triggers, it might be that your child is either in or approaching a stage of nervous system burnout.  

It might be necessary to radically reduce demands and eliminate everything across the board to really reach a place of nervous system regulation. It’s kind of like an elimination diet, first we have to take out all the possible triggers and allow for healing before we can start to add things back in to work out where the zone of tolerance is.

For our family, when our PDAer was in burnout it meant stopping absolutely everything, stopping any extra curriculars, stopping face to face therapy, stopping daycare and dropping everything at home except for expectations around safety. 

Healing can take months or even years. It can feel really hard when you are in that place. It can be hard to hold onto the hope that you are doing the right thing and that it won’t always be that way. It can be hard to trust the process.

We are 18 months post crisis and feel like we are in a really beautiful place of stability.

It’s now much easier to spot the earlier, subtle signs of escalation.  Our PDAer is regulated enough that he can collaborate, problem solve and negotiate with us. More often than not, we can de-escalate and diffuse before reaching the point of a meltdown.

It has taken a big picture mindset, letting go of things that aren’t truly important, and lots of intentional nervous system regulation. But what we now see is our son being able to stretch and grow in his own time and in his own way.

Hang in there. It can get better.

I want to share a story with you.

As a young child, our PDAer absolutely loved drawing, it was part of everyday. We would even take pens and paper on our morning walk to the park, and he would lie under the fort and draw.

He was interested in letters and numbers and started wanting to write his name.  

Then when he hit burnout at 3 and a half, he lost lots of skills including his passion for drawing and writing. Any suggestions around drawing, painting, colouring, writing would be met with extreme resistance.

So, we stopped pushing, we radically changed our lives, we allowed his nervous system to heal, and we trusted that he would do things like drawing and writing again when he was ready.

A couple of months ago, out of the blue, our PDAer sat down to draw a picture. This was after a year of no drawing! I had to keep my excitement in check because I didn’t want to make a big deal out of it and inadvertently create pressure that this would happen again.

Then a few days later he drew enough drawings to cover the walls of his bedroom. I gave him my full attention when he wanted to show me what he had drawn but didn’t ask any questions or make further suggestions.

Then about a month later he started wanting to work on his ‘documations’ as he calls them- he would sit at the desk in the study creating pages and pages of pretend writing. I secretly put away a page in my box of keep-sakes, this was a day I wanted to remember.

He started wanting to draw his name with chalk, with a stick in the chip bark at the park, with the pens at Granny’s house, carve it into trees. We just carried on as if this was a usual thing! No correcting or teaching. Inside I was bursting.

Then not only did he start to draw pictures, but he also wanted to label them too and started to sound out the syllables in words.

He started requesting to do alphabet puzzles that had been gathering dust in the cupboard.

Before bed he would say a combination of letters and ask me what it spelt and would be absolutely thrilled if he stumbled across a combination that made a real word.

One day while we were playing, I pulled out a fun letter app and just started to explore it myself.  It caught his attention and he wanted to learn about writing all the letters.

His innate joy for learning is a glorious thing to watch as it unfolds in his own way.

Our little boy is coming back to us. He needed time. He needed to feel safe. He needed us to trust him.

I share this story because it is so easy to doubt ourselves and question if we are doing the right thing. 

Trusting in our kids, and giving them time, are some of the most beautiful gifts we can give them.

I’d love you to share with me your stories. What skills have emerged for your kids when you took the pressure off?

For PDA kids, birthdays are surrounded with loads of traditions, demands and expectations…

• The build-up of waiting to receive gifts and pressures to act a certain way when receiving them.
• The expectation to have a party that comes with high social and sensory demands.
• The demand of joining in with structured party games, often with prizes involved.
• The tradition of everyone singing happy birthday and watching them blow out the candles.
• Even just the expectation to have a good time.

Our PDAer recently had a birthday, and these are some of the accommodations we put in place.

He knew exactly what presents he was getting from us. He even helped pick out and wrap some of them. He opened a couple of presents early, in the week leading up to his birthday.

Our PDAer requested a party at our house with all of his friends (eek!) we were hesitant, however given his enthusiasm, we decided to run with it, giving him control over all the details. Anxiety started building in the week leading up and we scaled the party back to just the grandparents and his 2 best friends.

We staggered everyone’s arrival times to reduce overwhelm.  It also meant that he could open presents and play with gifts straight away.

Our PDAer couldn’t wait for the piñata so we did this before any of his friends arrived.

He chose not to have us sing Happy Birthday. We simple just cut the cake.

The party was short with a designated finish time.  When we could tell our PDAer had reached his limit, we set him up watching TV in a back room while we ushered everyone out, there was no expectation for him to come to the door to say goodbye.

Afterwards, we had a restful afternoon with lots of opportunity for 1:1 play and didn’t make any plans for the rest of the weekend.

Lots of simple adjustments that meant he had a wonderful day.  

The big takeaways, we kept the emphasis on meeting our PDAers needs and tempered our own expectations around how birthdays should be celebrated.

How do you manage birthdays at your house?

Carer burnout is a very real thing.  As parents of PDAers we often live in a state of hypervigilance.  Having to closely monitor every situation and constantly co-regulate with our kids can leave us feeling really depleted.

You might also feel like you are in an impossible situation.  You know what you need to do to maintain your well-being but the constraints of the situation make it hard to actually implement the self-care routines that you need. 

Maggie Dent often talks about having micro-moments for self-care. Things that can be done at home with minimal time. I truly believe that all those small things can add up to making a big difference.   

These are some of the things that help me.  They were especially important when my PDAer was in burnout and there were days and weeks of not being able to leave the house.

1.Box Breathing

When we are stressed, our breath rate increases.  Deep breathing can help our system return to calm.

Get comfortable, you might like to place your hands over your heart, close your eyes and start by just focusing on your breath, breathing in through your nose and out through your mouth, with each breath you might notice it getting a little deeper.  Then count, 4 beats in, 4 beats to hold, then 4 beats to exhale and 4 beats to hold and repeat.

2. Body Scan

Doing a body scan is something I find helpful right before bed to help me calm my mind and allow me to fall to sleep. 

Start off by noticing your breath.  Now, switch your focus to how your body feels.  Starting at your toes and focus on the feel of your skin against the sheets or the pressure on your mattress, scan up, noticing the angle of your ankles, your knees, your hips. Notice the pressure through your back, your shoulders and arms, I like to finish by positioning my hands on my chest, feeling my heart beating under my fingers.

3. Journalling

It is easy to get stuck in worry loops, catastrophising about the future.  When these thoughts sneak up journalling is a helpful outlet. I was never big on writing and was sceptical when my counsellor first suggested journalling, however I have realised just how powerful it can be.  I find that if I can write it down, it stops constantly circling around in my head.   I don’t have a set schedule for journalling, I just use it as I need.

4. Grounding

Helping my kids through meltdowns is a reality at our house.  Afterwards, I look after my own nervous system using a technique called 5, 4, 3, 2, 1 grounding.  It uses all of your senses to help you focus on the present. 

• 5 things you can see.
• 4 things you can feel.
• 3 things you can hear.
• 2 things you can smell.
• 1 thing you can taste.

Then take a deep breath and carry on with the day.

5. Gratitude

There is a growing body of research to suggest that gratitude can elevate mood, help shift our mindset from the problems to the positives and remind us of the big picture. Sometimes when you are in the midst of really hard times it can be so hard to see that things can change, and they won’t always be this way. 

The key is finding a routine that works for you, it could be writing down 3 things you are grateful for in your diary, it could be setting a reminder to write them in your notes or calendar on your phone, it could be writing in a gratitude journal, it could be making a conscious effort at the start of each day to see the world through grateful eyes, it could be sharing what you are grateful for at the dinner table, or telling your partner right before bed at night.   

6. Yoga or Guided Meditation

I find following along with a short yoga or meditation video on Youtube is a great way to regain my composure in the middle of the day. I can usually set my kids up with screens to allow this to happen.

Lately, I have been saying out loud when I am becoming overwhelmed and then wondering aloud what I could do to help my brain and body to feel better.  It’s happened so often now that my PDAer will say, “I know mummy, you need to do 5 minute yoga!”

7. Being present

There have been plenty of times where I have gotten stuck in my own head worrying about how I should be parenting, what my kids should be doing, or despairing about the future. For me, being present quiets all the noise in my head and brings me back to what’s truly important.

Sometimes it is as simple as looking at the stars, the clouds, the sunset.  Noticing flowers up close, feeling grass beneath my feet, the warmth of the sun on my face, breeze on my skin, listening to the birds, and breathing in the fresh air.

When I’m with my kids it might be really taking the time to notice the sound of their voice, their laugh, how they look, their smile, how their hair falls, the softness of their skin, the feel of their little hand in mine, and how peaceful they look at the end of the day when they are sleeping. 

It takes trial and error to figure out what works for you. 

Which of these might you try this week?

What would you add to this list?

I don’t know about you, but I find that I often fall back into old patterns of communicating with my kids. This is especially so when I’m tired or overwhelmed, which means my own tolerance levels are close to non-existent. 

My daughter gave me a great reminder the other day. We had gone to visit an indoor play center. She was in kid-heaven. She is a sensory seeker and was having the absolute time of her life. It took us 4 attempts to transition out of that play center! 

Attempt #1: 15 minutes before it was time to go, I discussed the plan for leaving (which I had come up with, without including my daughter). The center had a deal where a free ice block was included with entry, and I thought that would be a helpful motivator. She would simply have her ice block and we would go on our merry way. My plan was going great until my daughter took 2 licks of her ice block and then said, “Wait I’m not done!” and proceeded to run back to the playground!

Adult imposed plan and bribe… epic fail.

Attempt #2: I remembered that we had a toy in the car that was her favourite new Elsa figurine and decided to go down the ‘incorporating fantasy’ route. I told her that I could hear Elsa calling out to her. It got her attention, “Oh no, I’m coming Elsa!” We were almost out, but then she turned around, coming to her senses, and again said, “Wait I’m not done!”

Manipulation/trickery… epic fail.

Attempt #3: I tried firmly stating the boundary saying, “Our time at the play centre has finished, it’s time for us to go.” I then picked her up and her response was kicking and screaming in protest. I quickly realised this path was futile and, for the third time, she ran back to the slide. 

Power/force… epic fail.

I sighed in exasperation and took a deep breath while I considered my next move. 

Have you been here?

Looking back, it is not surprising that none of these worked. They were only getting us further from leaving that play center.

Attempt #4: After she came down the slide, I got down to her level, held her and validated saying, “I know it is so much fun here and it is disappointing to have to leave. Our ticket was for you to play until 4pm and it is now 4:15pm. We have already stayed longer than we were supposed to.  We need to come up with a plan for going home.”

What did she do…

She ran back to the slide! But by the time she had scaled the stairs and reached the top, she had processed what I had said. She called out, “OK Mummy, we can go after this one, can you catch me!” And true to her word, we walked out calmly on her terms. 

Validation, explaining the ‘why’ & collaboration for the win.

This parenting business is hard work.

It’s not possible to get it right every time.

It’s a constant work in progress.

Be kind to yourself, learn from your mistakes, take a deep breath and try again.

OT Australia describes Occupational Therapists as, “using a whole person perspective to work with individuals, groups and communities to achieve optimal health and wellbeing through participation in the occupations of life.”

In this definition the word occupation is used to describe all the everyday tasks that occupy us.  They are the meaningful activities that we either want to, or need to, engage in.

For kids, their occupations might include…

• Developing relationships with other people. (parents, family, and friends)
• Learning to look after themselves. (eating, toileting, sleeping, hygiene, dressing etc.)
• Gaining education about the world around them, either at home or at school.
• Developing self-regulation skills.
• And underlying these areas, kids are developing their functional fine motor skills, gross motor skills, visual perception skills, executive functioning skills, and developing an awareness of their emotions and unique sensory preferences.      

What might OT look like for a PDA child?

When making suggestions OTs take a holistic view and consider the environment, the task, and the child’s unique abilities.  Any recommendations have to work for the whole family unit.

The Environment- eliminate or reduce triggers and increase the child’s sense of safety.

• This might be achieved via educating people that interact with the child about PDA, polyvagal theory, sensory processing, and declarative language.
• Having access to people that can foster co-regulation. People that the child has a strong relationship with, based on trust and connection.    
• Lowering the sensory demands of the environment or selecting environments that align with the child’s preferences. 
• Making changes to the physical environment to foster success.

The Task/Expectation- match expectations to the child’s ability.

• Reducing unnecessary demands across the board.
• Providing the child with assistance to make tasks achievable and allow for a ‘just right’ challenge.
• Altering the way tasks are presented to minimise eliciting a stress response. 
• Ensuring intrinsic motivation is maintained.  Explaining the ‘why’ and aligning with the child’s interest areas.
• Considering how can choice, control and flexibility can be incorporated.
• Allowing lots of time. 

The Child- consider their unique nervous system.

• What are their sensory preferences?
• What are the signs that their nervous system is starting to escalate?
• How can you tell that their window of tolerance is opening up?
• How can they be collaborated with to solve problems that might be preventing them from engaging in meaningful tasks.
• How can we facilitate them to develop awareness of their internal experience of sensations, so that they can understand, process, and start to advocate for what their nervous system needs.

What if your child can’t attend therapy sessions?

For many families of PDAers, ours included, that emotional energy cost of face-to-face sessions on the child and the whole family unit can be too high.  A parent education model that utilises telehealth can be a highly effective alternative, in fact I think this should be the first line approach when working with PDAers and their families.

What to look for if engaging in face-to-face therapy?

Depending on the type of therapy, home visits may be more suitable than clinic-based sessions.  The highest focus should be on developing a relationship of trust and safety.  It is essential that sessions are child-led, play-based and link in with your child’s interests. They must always have the choice to opt in or out of any suggested activities and their therapist must back off at any sign of escalation.

What approach to therapy has worked for your family?