PDA, Siblings and Mental Health - A Short Guide

For the last few weeks, my younger son William (5.5 years old) has been asking me how many days until we go on our special weekend trip “up north” in Michigan together. Every day he wakes up and asks, “are we going today?”

It will be just the two of us for the weekend and we will be visiting a dear friend of mine from when I went to summer camp as a child.

A part of my heart bursts with the sweetness of William’s excitement, while another part of my heart feels a familiar tightness.

You see, William and I have been traveling together – just the two of us – for a while now.

In fact, for three years, he and I would spend every vacation or trip together without my PDA son or his dad. For example, we spent Christmas visiting my mom or dad, while my husband would take Cooper (our now 9-year-old PDA son) on a ski trip in Michigan or some dopamine-fueled adventure where he could provide one-on-one nervous system support without distraction.

Obviously, this is not how I imagined I would spend weekends, holidays, vacations or evenings while my children were young. I missed my husband, I felt sad about my kids not being together, I wondered if they would grow up without a relationship.

So today, I have been thinking about siblings’ mental health. I know from working with so many families that you – like me – have probably spent a lot of time worrying about this, too. And so I want to share seven things that we have done to support William (and myself as a mom) to navigate the complex dynamic of being the sibling of an externalized PDAer (one who expresses activation with fight/flight and equalizes against his sibling, rather than oneself).

PDA, Siblings and Mental Health – a Short Guide

1 - Splitting the kids

As I mentioned, our family spent three solid years keeping the kids apart as much as humanly possible. This is because it simply wasn’t feasible to prevent Cooper's targeted controlling and aggressive acts toward William. When I would put myself between them physically, or remove William to another part of the house, Cooper would escalate and come after William like a homing device. I noticed that William’s body would tense, his pupils would dilate and his demeanor would change as soon as he heard his brother’s voice or when his brother would come home from school. I could actually watch the hypervigilance begin and it broke my heart.

Of course, there was a long period of time when I couldn’t separate them – it was the pandemic, we didn’t have outside caregiving support, and my husband had an incredibly intense, 24/7 job that required 99% of his attention.

Before the pandemic began, I had planned to keep my younger son in more full-time daycare, so that I could be with Cooper during the day to support him through burnout, but the shutdown dashed those plans.

We simply did the best we could, with the resources we had, at any given moment. It was messy. I put my body between them a lot. There was constant screaming. There was more screentime for my littlest than I would have liked. But that's how it had to be then.

2 - Explaining PDA simply and as a nervous system disability

From a very young age, William has been acutely aware of Cooper’s nervous system disability.

Of course, he was too small to articulate this concept, but I could see he knew something was fundamentally distinct for Cooper.

For example, William would often repeat phrases he had heard me say during a big panic attack and my heart would break as I would watch him go to Cooper and say “It’s not your fault, It’s not your fault” at the age of 2.5 years old.

As young as three years old, he would ask me things like – Am I part of Cooper’s team? Is Doggo (our service dog) here to help Cooper?  

I explained PDA to him very simply without getting into the details. For example, Your brother’s brain and body works differently than yours. Or His body is having a very hard time.

When talking to siblings of PDAers about the disability, there are a few things I have learned from my personal experience and working with parents:

• You can be affirming of the PDA identity in the home, while still acknowledging that the experience on the receiving end is not a positive one for the sibling. Expecting them to feel a certain positive way about an identity (vs. what the nervous system and brain are doing) can be too tall an order and actually unfair if what they are experiencing is aggression, violence and abuse. This is why it can be so important to separate out concepts and how we talk about them in the home – Diagnoses vs. the Nervous System vs. Identity (This is something we work on in depth in the Paradigm Shift Program).
• Especially for younger kids, keeping it simple is the best way to go. Focus on the body and brain, rather than terminology that can be confusing and unfamiliar.
• Often parents want to talk about “difference” with siblings, rather than disability, but this can lead to the logical response from the siblings of: but I’m different too, why does Cooper get all the attention and support? Conceptual accuracy from the beginning can be supportive, even if it requires us to confront the truth that PDA is a disability, not just a difference.
• A book parents have found helpful to start this conversation is: Poppy and the Overactive Amygdala.

3 - Not expecting William to be responsible for accommodating his brother

This past Christmas, my mom gave the kids $20 to spend on whatever they wanted as a gift. I remember William and I were at a local toy shop and he had picked out a toy for himself, but he was still looking around intently and picking up squishy balls and fidgets. I asked him if he wasn’t sure about his pick. He said, “I am looking for something for Cooper.” At first, I thought – oh my goodness, what a thoughtful thing to do – and then I realized I should probably probe more. I asked, “Do you want to get Cooper a gift with your money? Because you don’t have to and it is your money from Nana.”

“I’m scared of him seeing my toy if he doesn’t get one.” The truth came out.

He knew the dynamic so well, and he was trying to prevent it. The moment when Cooper realizes that his brother has something he doesn’t it sets off his neuroception of threat because he is PDA. The brain subconsciously perceives threat because William is “above” him in terms of owning things, because in the moment he sees the toy William has as “more”.

“I will handle it, Honey. You don’t have to get something for him.”

I watched him smile, put down the squishy toy, and walk towards the register.

This moment illustrated for me another nuance with parenting more than one child in a PDA home. While it is important that we teach siblings about PDA as a disability and do so without blame or shame, it is just as important that we don’t equate that with putting the responsibility of accommodation on the sibling. Awareness is not the same as shouldering the responsibility of accommodating. The accommodation is the grown-ups’ responsibility.

I have worked with many parents who grew up with undiagnosed siblings who were PDA and many felt that they were tasked with being the “primary” accommodator of their sibling. This is an immense toll on a young nervous system.

I want to name and validate that for some families (ours not included lol), the sibling is another safe nervous system. The sibling is comfortably flexible, allows the PDAer to be first, to have the last word, to control the play, to have their way, and that is wonderful. This can take a huge load off the parents’ nervous systems. There is nothing wrong with this.

This is simply an invitation to be aware of how much of a nervous system load is implicitly on the sibling to keep the PDAer regulated and if it is truly the choice of the sibling or an unspoken expectation.

4 - Setting boundaries and verbally signaling the values of the family when possible

Of course, our family has not been able to entirely keep the siblings separate at every moment. And as Cooper’s window of tolerance has improved – as has our communication, felt safety and trust in the family – we have been intentionally spending more time as a family (!!).

However, sometimes Cooper's switch is still flipped and he does something aggressive towards William (like walking up to him and bumping or hitting him). It may be more subtle things, like hovering in his air space, putting his feet on his carseat and saying “they aren’t touching him” or poking/prodding/whispering/goading constantly when I look away.

Some of this is “typical” brother behavior for the developmental age, but I am acutely aware and sensitive to it because I know it could cross the threshold into “abusive” at any moment without much warning.

As we know, setting a boundary or a limit with a PDA child or teen has a nervous system cost. Sometimes this cost is huge, if they are in burnout and at their threshold. Over time, the cost may be less, but it is still there.

Saying something like “we don’t swear in this house” or “you can’t talk to your brother like that” will NOT stop the behavior. It may even escalate it. However, through cost-benefit decision-making, my husband and I often decide to say something like that in order to signal to William that we have seen and heard what is happening (and we are not ignoring it), even if this causes Cooper to escalate.

This is something we couldn’t do closer to burnout without huge implications for aggressive behavior and meltdowns, so we erred on the side of splitting them up as a preventative measure. (I know many families cannot split the kids, especially those led by single parents. This is simply what we chose to do with the resources we had at the time. There was a year when I could not split the kids and it was a harrowing experience so I can commiserate.).

5 - Re-examining parenting for the PDA sibling

When William was about three, I spent a lot of time agonizing over whether or not he was also PDA. He was resisting every transition, having screaming meltdowns and seemed to have a hypersensitive response to a lot of things. He had always had his own sensory issues, but his dysregulation seemed to be a mix of his neurotype and temperament, the developmental age and stage, the experience of growing up in a household with a PDAer in burnout with lots of chaos, and the trauma and anxiety that comes with that. Whew.

One of the things that would set William off was the different set of expectations around screens, eating, and boundaries for Cooper versus him. I decided to experiment with lowering demands and parenting him in a similar way to Cooper in many ways, while still doing a cost-benefit around boundaries that were specific to him.

Now, William watches a lot more screens than Cooper did pre-burnout and much more than I would prefer (at the same time, he has taught himself Minecraft without being able to read and has suddenly built amazing worlds that show me the inner workings of his little engineering brain!). He eats less healthy than I would prefer. We also deliver him food on the couch for meals.

However, this is balanced with more structure and routine – which I have observed he likes – than Cooper has. We hold more boundaries about getting off the screen and encourage and explain to him why he can’t have only hot Cheetos for dinner.

We have found an equilibrium that, truth be told, still sends me into a panic sometimes when Cooper is off doing activities all day like football and fishing, and all William wants to do it watch a screen and I have to goad him off.

When the kids are separated, I parent in a slightly different way. In the home, when everyone is together, we lower demands and have a more similar family culture around delivering food and screens. This is work. It is nuanced. It is more caregiving for me, but we also have more peace.

This is not a set of solutions (there isn’t an easy solution to siblings!), but rather a set of decisions. I often invite parents to work through this cost-benefit and experiment, while exploring their resistance to accommodating a non-PDA child. There is no single right answer or decision, and all families choose a different way of balancing this.  

6 - Therapy and Mental Health support for William

Once the family was more stable, we had more capacity to focus on William’s needs. This includes therapy for William. The two types of therapies we have done are play-based occupational therapy and the Safe and Sound Protocol (which I have also done with Cooper three times and twice for myself). In general – and especially when considering younger children (10 and under), I would recommend thinking about body- and play-based therapies rather than “talk” or “cognitive” based therapies. Looking into DIR-Floortime, child-led play, regulation-oriented occupational therapy, and even things like art or music therapy can get your creative juices flowing.

Of course, many of you cannot even think about adding one thing to your plate, so just put it on the back burner for a year or two.

7 - Recognition that PDA will impact the Sibling (this one is more for my mental health).

Finally, on the hardest days when I worry most about William, I remind myself – I am raising a child with a disability. This introduces constraints, tradeoffs and impacts to my family life and my other child that wouldn’t exist if I was raising two non-disabled children.

Just like a mother raising a child with down syndrome, cerebral palsy, in a wheelchair, or with other chronic health issues, this dynamic WILL impact the non-disabled sibling. This is just a fact and one I cannot change.

Working on radically accepting this fact without judgment of myself or my family has been a long and painful process, but one that has released a lot of guilt and shame.

When I have spoken to adults who were raised in a family with a PDA sibling, the two biggest things that came up as traumatic for the sibling were:

• The parents not recognizing or acknowledging that the sibling was abusing them.
• The parents not doing anything in response to what felt like abuse.

This does not indicate that the parents needed to solve every problem or prevent every moment of equalizing, but rather that the pain came from parents who looked the other way, denied or pretended it wasn’t happening, and left the sibling entirely to themselves and feeling crazy.

None of you are doing that – you wouldn’t be here reading this if you were in that level of denial – so please take some of the pressure off.

Sometimes it is transformational just to confront the truth and communicate it in your home, even if you can’t solve every problem. None of us can. Including me.

All right my friends, there's my mini guide on mental health when raising a PDA child and non-PDA sibling. I hope some part of it can make your weekend more peaceful.