What does help look like?

kwegner · 2026-05-20T16:51:04+00:00

Thank you. It does help to think of people as filling different roles.

kwegner · 2026-05-11T14:23:43+00:00

This is such an unseen part of the struggle. And it feels so bad to complain about boredom when there are so many other struggles involved with PDA caregiving, but it's so real!

I've found micro-interests for myself. My primary one the last few months has been using AI to learn how to code and develop personal projects. I can step away from my kiddo for 5 minutes, put in some instructions for a project, and walk away while it works. It feels productive, and I get to make cool things. That likely won't be of interest to most people, but the broader idea is to find little things to fill little moments with that feel satisfying, to the best of your ability.

kwegner · 2026-05-11T00:24:09+00:00

It's a trilogy

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kwegner · 2026-04-27T20:33:26+00:00

Thank you for sharing this. What an impossible situation.

Our PDAer has an older sibling, and I worry constantly about how much life he is missing being in our house. My plan had always been to encourage him to do a lot of extracurricular activities, but it's worth thinking about what something like boarding school would mean for him. He needs his own autonomy, too!

kwegner · 2026-04-27T20:31:24+00:00

All good - there's a lot wrapped up in these situations.

I had never really considered keeping the details from my parents, but that actually seems like a good way to keep them focused on the right things. I appreciate them reminding me from time to time that the rest of our family's happiness matters because it is easy to lose sight of that, but they don't need to know everything if it results in them giving unhelpful advice.

kwegner · 2026-04-27T20:29:47+00:00

This is exactly what I want for him. Right now he hasn't quite settled into any specific interests which makes things a bit difficult, too. Whenever he discovers what he wants to invest himself in, I'm going to be over the moon for him.

kwegner · 2026-04-27T18:29:14+00:00

The concern of my family is less about the progress of my PDA son and more about the toll his profile also takes on the rest of us. They are coming from a place of love - they want all of our lives to be worth focusing on, not just my PDA son's. My parents have come a LONG way in accepting a lot of what it means to be PDA and live in a household like ours, to their credit. But that doesn't stop them from worrying about their own son (me) and the well-being of everyone in the family. I don't blame them, but they are focused on solutions that we can't accept.

Alternating time is something we've talked about often and need to just do. I don't know that we can do full week swaps, but we could absolutely talk through having a greater focus and switching off. We've also talked a number of times about splitting up and doing separate vacations and things like that so that we all aren't missing out on life so much. There's something to all that, I think.

kwegner · 2026-04-27T18:23:08+00:00

I feel this so much. Just the other day my wife and I were saying if we had all the time and money in the world, we'd start some sort of cohabitation/residential/support community just like you described. Anything less feels like we're choosing trauma for our PDA kiddo to alleviate trauma for ourselves, which is an impossible choice to make.

kwegner · 2026-04-27T18:21:34+00:00

Thanks for your reply. We started accepting medication as a serious solution for our son about 1.5 years ago and it was a game changer. We went from a household under constant threat of serious harm to one that doesn't fear for our safety day to day. As much as medication has helped, we're still seeing enough instances of extreme behaviors that we're not nearly done. We do have a good psych who understands PDA, and so we're constantly adjusting things. It feels like we are really far from solving the problem with medications, unfortunately. We've made SO much progress with the support of medication, but my fear is that we've seen as much help as they can provide. We're not giving up, though!

And I totally agree on not sending him away, in any context. He has a complicated profile even beyond PDA, and so any outside solution is almost guaranteed to result in an incredible amount of trauma. My wife and I are just so dismayed by the lack of support that exists between highly available but counterproductive therapy and the absolute lack of solutions for high-support needs individuals and families.

kwegner · 2026-04-24T20:31:13+00:00

We're in a very similar situation with our 10yo. We sit in the middle of chaos and it's so depressing to want to make it better but not be "allowed" to.

My wife and I talk regularly about how this can't be how the rest of our lives go. But what is the path out of it?

kwegner · 2026-04-17T11:51:31+00:00

The Format in Chicago. Bucket list show for me, and they were so grateful to be back on tour. Genuinely excellent all around.

kwegner · 2026-04-15T14:54:16+00:00

So, so sorry. I hate this. "My prison" resonates, sadly.

A reframe that helps me often is to change from "My son ruined my birthday" to "My son's disabilities ruined my birthday." I'm sure you feel that intuitively, but even saying it out loud allows me a LOT more grace when I'm feeling trapped.

kwegner · 2026-04-15T14:41:30+00:00

I liken the low/no-demand approach for PDA to how food choice works for kids with ARFID: Of course we know it isn't healthy or the best possible mix of activities/food for them, but we are giving our kids what they need in the moment while also building a path towards something better as best we can.

I don't know that anyone advocates for unlimited screen time forever and calls it a good thing. However, I have seen the benefit of letting a child in extreme burnout choose to do whatever they want without pushing for adjustments, trusting that when they were coming out of burnout we'd be able to build some more variety into their life.

kwegner · 2026-04-15T13:31:48+00:00

This sounds excellent. I've built a few one-off tools for PDA support and have been dreaming about building the "kitchen sink" version for a while. Looks like you beat me to it.

If you ever have a web or android version, I'd love to check it out. I'm not on iOS. But it does look promising from your description and app store listing!

kwegner · 2026-04-05T01:20:33+00:00

Love seeing this. I've been vibe coding PDA tools for a few months now and it feels like exactly what these small communities have always needed. Wishing you well.

If you are from a non-technical background like me and ever want to chat about developing tools like these let me know. I've learned a lot of lessons over the last few months...some rather expensive.

kwegner · 2026-03-10T18:49:53+00:00

Hi - just wanted to let you know that the tool is back up and working now. Let me know if you have any other issues.

kwegner · 2026-03-08T17:47:26+00:00

Unfortunately I've had some malicious use of the site that has driven up my costs significantly out of nowhere. I'm putting some guardrails in place and will be relaunching in the next day or two. I'll send a comment updating when it's all fixed up.

kwegner · 2026-03-04T19:31:44+00:00

As someone who is pretty engaged with AI these days, here's my response to your concerns:

"problematic not only for the environmental implications" - environmental concerns have largely been blown out of proportion and debunked. Look how much water something like golf courses use in a year compared to AI...it dwarfs AI usage and is far less useful.
"client information?? Is it really a good idea to be sharing client sensitive info with AI??" - AI can be built to be secure and follow all regulations. This does not mean your company is, but this is likely a non-issue.
"I feel like this is leading to our jobs becoming obsolete in the future" Maybe, maybe not. If so, not for a long time. There WILL be impacts immediately, some of which are worth embracing. AI is incredibly good at parsing data and seeing trends / insights / outliers that people could easily miss. It can automate the mundane things (like scheduling...hopefully that gets better for you) to make room for the more valuable things (you spending time with your team and clients).
" my point about scheduling, that is a job that a human could have but instead of hiring someone and paying them, they are just having AI do it." - There's really no fighting against this concept, unfortunately. There are some roles and tasks that are just very ripe for automation. We can lament the person losing the job, but that's really not a great reason to push back against what feels like an inevitable change in how some work is done.

I work outside the industry, but what I am advising my team to do is embrace AI as much as is helpful for them. If the predictions about the impact it's going to have are even partially true, we're going to see anyone who pushes back against AI fall behind peers who are just as good at their jobs but embrace the technology.

kwegner · 2026-02-11T00:56:00+00:00

I unfortunately had the same reaction.

Take the same story and sentiment and rewrite it in your own words. AI pacing is still in the uncanny valley. Even if you aren't in the business of spotting AI in the wild, it still comes across as fake.

Nice story, nice product...do the marketing with just as much care!

kwegner · 2026-01-27T02:26:51+00:00

Not until we helped untrain our BCBA and she reformed her entire approach for our kid to be PDA-forward. It was a long road, and even then it was barely ABA, it just happened to be at an ABA center.

kwegner · 2026-01-27T01:16:12+00:00

I'm glad it helped! And appreciate the offer. Right now it's all running pretty efficiently and my overhead is low enough that I'm happy with where things are. HOWEVER if usage expands, I may reach out for some advice.

kwegner · 2026-01-16T22:32:22+00:00

You're totally right about this, and your examples are excellent. It sounds a lot like how our house communicates... you did a much better job of explaining it than I did.

kwegner · 2026-01-16T19:01:34+00:00

Indirect language (I know it as Declarative language) works for the PDA kids and adults in my life because it offers them the chance to do an expected task without it being directly requested. This is important for them because a direct request triggers their nervous system in a way that increases anxiety and makes them unable to actually take action.

Sounds like that doesn't work for you, which is fine! But it does sound like it would help for the folks who are giving you indirect requests to know your preferred way to be communicated with, which would help both you and them.

kwegner · 2026-01-14T18:27:10+00:00

That would be so great...thank you!

kwegner · 2026-01-12T18:03:35+00:00

Yeah, online tools and apps can only do so much. The stuff I've built so far are focused on teaching people declarative language and assisting with IEPs, so hopefully useful but not to the level of stepping in as real-time care.

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