The real question is: How do I make this work long-term for them and for us?
I’ve been doing this for a long time with my son Michael. I’ve made a lot of mistakes. Here’s what I’ve figured out.
Key Points:
- Good autism respite care isn’t babysitting. Treat helpers like skilled professionals they are. And they’ll act like it.
- A basic written schedule and a one-page behavior playbook save people from the thing that actually burns them out. Not knowing what’s coming.
- Pay matters, sure, but reliability matters almost as much. People stick around for a job they can count on.
- Progress with profound autism shows up in inches. Notice the inches out loud and your helpers will notice you noticing.
They’re Not Babysitters, So Stop Treating Them Like One
A helper working with your kid might be doing communication support, behavior prevention, personal care, transportation, safety monitoring, emotional regulation and every so often, real crisis management. That’s a lot to carry in one shift. It’s not babysitting. It’s skilled work and if you want someone to stick with it, they need to be treated like the professional they are or the professional they’re becoming, with your help.
Here’s the thing nobody tells you going in: these people end up feeling like family pretty fast. They’re at your table for meals. They’re with your kid on good days and terrible days and everything between. That kind of closeness means they need real things from you. Clear expectations, honest feedback, actual support and they need to know they matter to you. Not in some weird way, just genuinely.
And you have to watch out for burning them out. Don’t hand someone a brutal shift before they’re ready for it. Don’t leave them alone with a high-risk behavior too soon. Don’t let one person carry the whole load because they seem capable. Caring a lot about your kid doesn’t mean a person has unlimited capacity for stress. We don’t have that either, if we’re honest.
Give Them a Map Before You Give Them the Keys
Most helpers who quit don’t quit because the work is hard. They quit because it feels unpredictable. Chaotic. Sometimes scary. You can fix a lot of that with two documents you probably haven’t made yet.
First, a schedule doesn’t need to be fancy. Just something visual or written that shows what a normal day looks like, what your kid usually does, what choices they get and what’s a preferred activity versus a chore. Laundry before basketball. Speech practice before the walk outside. It doesn’t have to be rigid, it just has to exist so your helper (and honestly your kid too) knows there’s a plan.
Second, a behavior playbook one page or maybe two. How does your child communicate? What are the early warning signs before things go sideways? What calms things down, what makes it worse, what do you do in a meltdown, what do you never do? What does this kid look like when they’re happy versus scared versus in pain versus just needing a break?
Don’t sugarcoat the hard parts here. If there’s aggression, self-injury, elopement, toileting issues, sleep problems or sensory stuff say it. Yes, it might scare off the wrong person. Good. Better that happens on day one than three months in, after you’ve trained them and built a routine and everyone’s attached.
Think About Where They’re Headed, Not Just Where You Need Them Now
If you’re hiring students or people working toward becoming a therapist, teacher, nurse or social worker BCBA. Ask what they actually need out of this. Internship hours? Grad school credit? Could their time with your child count as practicum work? Would a recommendation letter help them? Could you chip in for CPR certification, first aid, seizure response training, AAC training, de-escalation training?
When this work connects to something they’re actually building toward, it stops being just a paycheck. It becomes part of their story. They’re learning patience, humility, how to communicate without relying only on words, how to stay calm when things get hard and I’ll be honest, I’m almost 70 and I’m still working on staying calm. So picture what that’s like for someone in their twenties learning it in real time. When people feel like they’re growing, they stay longer. That part’s not complicated.
Don’t Let Every Shift Feel Like Survival Mode
Some days really are just about getting through it safely and that’s fine, that’s allowed. But if every single shift feels like an emergency, people wear out fast. So build something in to look forward to. A walk. The library. A snack run. The climbing gym. Swimming. Music in the park. Even a household chore, believe it or not.
Our son Michael is 36 and he loves to clean: sweeping, tidying and picking things up off the floor. We think it gives him a real sense of accomplishment, so we lean into it on purpose throughout the day.
One thing that’s made a genuine difference for us is pairing two helpers with two individuals instead of one-on-one. A single helper alone with one high-support person can feel really isolating. Two feels safer, more social and more flexible. There’s a backup if something goes wrong, there’s someone to laugh with and someone who just gets it without you explaining. Helpers need people too, not just a paycheck or a checklist.
Pay Fairly. Pay On Time. Don’t Make People Chase You.
I said this and I meant it. This is not low-value work, so stop paying like it is. I think about how underpaid teachers are in this country, and then I think about the people spending eight hours a day with our most vulnerable kids and adults and something about that math never sits right with me.
I know a lot of families are stretched thin. Medicaid waiver rates and respite funding are often nowhere near enough. But pay what you can, pay on time and don’t make someone hunt you down for a check. If your state has consumer-directed or self-directed Medicaid waiver options, learn how they work. A lot of families don’t realize they can act as the employer and manage their own hires through that funding. And if the official rate is too low, look for ways to supplement. A training stipend. A holiday bonus. Mileage. Covering meals during outings. Paying for activities. A little extra after a genuinely hard week. Guaranteeing some minimum number of hours so they can actually plan their life around the income. Predictability is its own kind of pay. A helper who feels respected financially tends to build their life around this work. One who feels shorted or taken for granted leaves eventually, no matter how much they love your kid.
Celebrate the Inches
A good shift isn’t a perfect shift. That was never realistic. A good shift might be that everyone stayed safe. Or your kid communicated one need clearly. Or a transition went a little smoother than last week. Or they made it three minutes in the grocery store before things got hard. Or a meltdown ended faster than it used to. Or your helper caught the warning signs early and headed it off before it became something bigger.
With profound autism, that’s the pace of inches, not miles. So notice the inches out loud and be specific about it. “You gave him time and that’s what made the difference.” “You saw him getting overwhelmed before it turned into a meltdown and you stayed calm and he felt that.” It’s not empty praise. It’s you telling your helper you actually see what they’re doing.
Talk About It Before It Becomes a Problem
Don’t wait for something to blow up before you have a real conversation. Build it into the routine with a quick debrief at the end of shifts if you can manage it. What went well today? What was hard? Any triggers you noticed? Does anything surprise you? What would make tomorrow easier?
And when a shift goes badly, ask about it without making it feel like an interrogation. You want your helper to feel safe telling you the truth. If they’re scared to admit something went wrong, you’ve lost your shot at fixing it and honestly you’ve lost a little bit of trust too. Over time these conversations are what turn a group of individual helpers into an actual team.
The Honest, Bigger Truth
We’re in a caregiver workforce crisis. This isn’t just your family’s problem, it’s everywhere. Families all over the country are struggling to find and hang onto good help, and I don’t think that’s going to fix itself anytime soon. So we have to think about this differently. We’re not hiring a sitter. We’re building a bench, a real team around someone we love.
Good helpers stay when they feel safe, trained, respected, paid fairly, connected to the progress and like there’s some joy in the work along with the hard parts. They leave when it feels chaotic, isolating, underpaid, or impossible to sustain. Our job isn’t just to find help. It’s to make that help sustainable for the long run.
Here’s the part that keeps me doing this even on the hard days. When it works, it really works. The right helper stops being just a break for you. They become a real friend to your child. They open up parts of the community you didn’t think were accessible. They notice things about your kid that you missed. And they remind you, in a way you kind of need reminding, that you were never supposed to do all of this alone.
So start small if you need to. Write the schedule. Put together the playbook. Say thank you more than feels necessary. Ask for feedback and actually listen to it. Pay what you’re able to. Build in a little joy where you can. Protect the people who show up for your family. It’s hard work keeping good help, but it’s not impossible. And when you get it right, it changes more than your kid’s life. It changes yours too.
What You’ll Actually Take Away From This
- Why calling this work “babysitting” quietly pushes good people out the door
- A simple way to build a daily schedule that helpers and kids can both count on
- What actually belongs in a one-page behavior playbook and why hiding the hard parts backfires
- How to connect this work to a student or early-career helper’s own goals so they stick around longer
- Small, low-cost ways to build actual joy into hard days
- What fair pay looks like even on a tight or waiver-capped budget
- Why a five-minute debrief after a shift matters more than most people think
Notable Quotes
- “They’re not just helping your child. They’re helping your whole family survive and breathe and maybe even begin to thrive again.” – Mike Carr (00:04)
- “This is not babysitting. That is skill, meaningful, demanding work.” – Mike Carr (00:52)
- “Love helps, but love does not replace training, backup, rest and a workable plan.” – Mike Carr (01:49)
- “A good playbook doesn’t make the hard moments disappear, but it gives your helper a map and a map builds confidence.” – Mike Carr (03:36)
- “When helpers feel they’re growing, they’re much more likely to stay.” – Mike Carr (05:23)
- “A helper who feels underpaid, uncertain, or taken for granted is eventually going to leave, even if they love your child.” – Mike Carr (07:55)
- “With profound autism, we all know progress is often measured in inches, not miles.” – Mike Carr (09:40)
- “If they’re scared to tell you something went badly, you lose the chance to fix it.” – Mike Carr (10:35)
Resources & Links
- Medicaid Waiver / Consumer-Directed Services Programs – State programs that can let families act as the employer of record and use waiver funds to hire and manage their own support staff.
- BCBA Supervised Fieldwork / Practicum Hours – The kind of academic or licensure credit an aspiring behavior analyst might be able to earn through respite work.
- CPR, First Aid, Seizure Response, AAC and De-escalation Training – Certifications families can help fund for helpers, which benefit both the caregiver’s development and the child’s safety.
Chapters
- 00:04 Why keeping help is harder than finding it
- 00:52 They’re not babysitters, so stop treating them like one
- 02:47 The schedule and the behavior playbook
- 04:32 Thinking about where helpers are headed, not just what you need now
- 05:23 Building actual joy into the hard days
- 07:05 Why pairing helpers together helps everyone
- 07:55 Paying fairly and being reliable about it
- 08:48 Celebrating the inches
- 10:35 Talking about it before it becomes a problem
- 11:27 The bigger picture: a caregiver workforce crisis
Frequently Asked Questions
Does ABA or behavior support still matter once someone’s an adult, not a kid anymore?
Yes and this episode makes that point directly Mike’s own son is 36. The core work of behavior prevention, communication support and emotional regulation doesn’t stop mattering after childhood, it just gets adapted to adult routines and adult dignity.
How honest should I be with a new caregiver about aggression or self-injury?
Completely honest, upfront, in writing if you can. It feels risky, but it’s much better to lose a mismatched helper on day one than to invest months of training only to have them walk away during an actual crisis.
My child is nonverbal how do I explain how they communicate to someone new?
A short behavior playbook that describes how your child actually shows needs, distress, joy and pain in their own way goes a long way, since most new helpers come in expecting typical speech-based cues that just won’t apply.
Why does it feel impossible to find and keep respite care right now?
Because it kind of is, in a lot of places. This isn’t a personal failure. It’s described in the episode as a real caregiver workforce crisis driven partly by funding rates that haven’t kept pace with what the work actually requires.
Can I use Medicaid waiver money to hire my own respite staff directly?
In a lot of states, yes. Consumer-directed or self-directed waiver programs often let you act as the employer and use state funds to pay and manage your own support staff, though the exact rules vary quite a bit by state.
How do I pay fairly when my waiver rate is basically fixed?
Look beyond the hourly number. Mileage reimbursement, covering activity costs, a training stipend, a holiday bonus, or guaranteeing a minimum number of hours can all add real value and predictability even when the base rate can’t move.
Transcription:
Mike Carr (00:04): Welcome back to Autism Labs. In the last episode, we talked about one of the biggest challenges we face as parents. How to find great help for our severely autistic son or daughter. This week, I’d argue we’re talking about something even harder: how do you keep them?
When you finally find someone who’s patient, kind, steady, teachable, and willing to do the hard work, that person is incredibly valuable. They’re not just helping your child, they’re helping your whole family survive, breathe, and maybe even begin to thrive again. So the question isn’t just “how do I hire someone.” The better question is “how do I make this sustainable, for them and for our family?” I think it comes down to three pillars: respect, predictability and I hate to say it, but it’s true pay.
Mike Carr (00:52) Pillar One: Respect. They’re not babysitters, so don’t treat them that way. This work can involve communication support, behavior prevention, personal care, community outings, safety awareness, transportation, emotional regulation, physical activity, and sometimes crisis management. That’s not babysitting that’s skilled, meaningful, demanding work. Treat your helpers like the professional partners they are, or the professionals you’re helping them become through careful, intentional coaching.
In many cases these helpers become almost like extended family. They eat meals with you. They spend long days with your child. They see your child at their best, their worst, and everywhere in between. That means they need clear expectations, accountability, support, and yes they need to know they matter. Not mushy or inappropriate affection, just the sense that they truly matter, because they do.
They also need protection from burnout. Don’t throw them into heroic shifts before they’re ready. Don’t leave them alone too soon with high-risk behaviors. Don’t expect one person to carry the whole plan. And don’t assume that because they care deeply, they can absorb unlimited stress we can’t, and neither can they. Love helps, but love doesn’t replace training, backup, rest, and a workable plan.
Mike Carr (02:47): Pillar Two: Give them a schedule and a behavior playbook. Many helpers don’t burn out simply because the work is hard they burn out because the work feels unpredictable, chaotic, or scary. One of the best things you can do is give them a clear framework: a written or visual daily schedule showing what usually happens, what choices your child can make, which activities are preferred, and how to balance harder tasks with more rewarding ones. Maybe laundry comes before basketball. Maybe therapy comes before a walk outside. The schedule shouldn’t be rigid, but it should give your helper and your child confidence that there’s a plan.
Mike Carr (03:36): Just as important: create a simple, one-to-two-page behavioral playbook. Explain how your child communicates, the early signs of distress, common triggers, what helps calm things down, what makes things worse, what to do during a meltdown, and what to never do. Describe what joy looks like, what fear looks like, what pain looks like, what “I need a break” looks like.
Don’t hide the hard stuff. Be honest about aggression, self-injury, elopement, toileting, and sleep issues. Yes, you might scare away the wrong person but that’s okay. Better to know that before investing weeks or months in someone who ultimately isn’t the right fit. A good playbook doesn’t make hard moments disappear, but it gives your helper a map, and a map builds confidence.
Mike Carr (04:32):Pillar Three (sort of): Help them grow toward their own goals. One of the best ways to keep great helpers is to care about their future, not just your own needs. If you hire students or aspiring therapists, teachers, nurses, social workers, or behavior analysts, ask what they’re working toward. Do they need internship hours or graduate school experience? Could their time with your child count toward practicum or supervised fieldwork? Would a letter of recommendation help? Could you help fund CPR, first aid, seizure training, AAC training, or de-escalation training?
Mike Carr (05:23): When you connect this work to someone’s calling, it becomes more than a job, it becomes a milestone in their own life. They’re learning patience, humility, how to communicate beyond words, how to stay calm under pressure. Honestly, I’m almost 70 and I’m still working on that. Imagine what it’s like for someone in their twenties. These are life-changing skills, and when helpers feel they’re growing, they’re far more likely to stay.
Make the days meaningful and as fun as possible. This is easy to overlook. If every shift feels like survival, people wear down. Some days the goal really is just “keep everyone safe and get through it” that’s fine. But whenever possible, build in something to look forward to: a walk, a hike, the library, a favorite snack, a climbing gym, basketball, swimming, music in the park, a picnic, a visit with another family, even a household task that gives your child a sense of purpose.
Mike Carr (06:18): Our son Michael, 36, loves to clean, sweeping, tidying, picking things up. We think it gives him a real sense of accomplishment, so we build those tasks into the day on purpose.
Mike Carr (07:05): One of the best things we’ve seen is pairing helpers and families together. One helper with one individual can feel isolating. Two helpers with two individuals feels safer, more social, more flexible, and more fun. There’s backup, there’s camaraderie, and there’s someone else who understands the work. Helpers need community too.
Mike Carr (07:55): Pay as well as you can, and be reliable. Invaluable help should not be treated as low-value work. Teachers are underpaid in this country, and think about the people working with your kid every single day. This is not low-value work. I know funding is complicated and Medicaid waiver or respite rates often aren’t enough. But pay fairly, pay on time, and don’t make people chase their paycheck.
If your state offers consumer-directed or self-directed Medicaid waiver options, learn how they work. These programs often let you act as the employer and use state funds to hire and manage support staff. If the official hourly rate is too low, supplement where you can: a training stipend, holiday bonus, mileage reimbursement, meal costs during outings, activity fees, a bonus after a hard week, or a guaranteed minimum number of hours so someone can count on consistent income. Predictability matters. A helper who feels respected financially is more likely to build their life around this work. A helper who feels underpaid or taken for granted will eventually leave, even if they love your child.
Mike Carr (08:48): Celebrate the wins, even the micro wins. A good shift isn’t one where your child acts perfectly that’s not the goal. A good shift might be one where everyone stayed safe, your child communicated a single need, they tolerated a transition a little better than last week, they lasted three minutes in the grocery store without a meltdown, they recovered faster, or the helper caught the warning signs before things escalated. With profound autism, progress is measured in inches, not miles.
Mike Carr (09:40): Celebrate the inches, and be specific: “You handled that transition beautifully.” “You noticed he was getting overwhelmed before it became a meltdown, and you stayed calm, he felt that.” This isn’t fake praise. It’s honest, specific appreciation that shows your helper you see the skill in what they’re doing. The goal isn’t perfection, it’s safety, connection, growth, and dignity.
Mike Carr (10:35): Don’t just encourage feedback plan for it. Build feedback into the rhythm of the work. Don’t wait for something to go wrong. Debrief regularly, ideally at the end of every shift: What went well today? What was hard? Did you notice any triggers? Did anything surprise you? What helped, what made things worse, what should we try differently? After a hard shift, debrief without blame the goal is to learn, not interrogate. Your helper needs to feel safe telling you the truth. If they’re scared to be honest, you lose the chance to fix problems and to build the relationship. Over time, these conversations build a stronger team, help your child get better support, and stop you from carrying everything alone.
Mike Carr (11:27): The bigger picture. We’re in a caregiver workforce crisis, and this isn’t just your problem or mine. Families everywhere are struggling to find and keep good help. We have to think differently. We’re not just hiring a sitter; we’re building a support team, a bench around someone we love. Great helpers stay when they feel safe, trained, respected, fairly paid, emotionally connected to the progress, and able to find some joy in the work. They leave when the job feels chaotic, lonely, underpaid, unsupported, or impossible.
Mike Carr (12:27): Our job as parents isn’t just to find help it’s to make helping sustainable. And here’s the hopeful part: when you do this well, something beautiful happens. The right helper doesn’t just give you a break. They become a trusted friend to your child. They open doors to the community. They see abilities others miss. They bring fresh energy into the home. They remind you that you were never meant to do this alone.
So start small. Create the schedule. Write the playbook. Say thank you more than once. Ask for feedback. Pay what you can. Build in the joy. Protect the people helping you. Keeping great help is hard but it’s possible. And when you build the right bench, it can change not only your child’s life, but yours too, in amazing and truly magical ways.
I hope you have a wonderful week, and please come back next week for another episode of Autism Labs. See ya.
