Autism Respite Care: 7 Ways to Find Real Help

In this episode of Autism Labs, Mike Carr shares personal lessons learned from more than 30 years of raising his profoundly autistic, nonverbal son Michael and discusses one of the greatest challenges families face: finding reliable caregivers for individuals with high support needs autism. He explains that while family members often help early on, trained and dependable support becomes essential as children grow older and behaviors become more complex. Mike emphasizes that the best caregivers are often patient, flexible, teachable, and compassionate rather than simply highly credentialed. He outlines seven practical ways families can build a strong caregiving team, including using respite resources, connecting with climbing communities, partnering with other parents, recruiting special education aides, exploring faith-based disability ministries, working with universities, and improving job postings with more professional titles. Throughout the episode, he encourages families to build a full “bench” of caregivers instead of relying on one person and reminds listeners that although the process can be exhausting, trustworthy and caring helpers do exist, and families do not have to navigate the journey alone. 

If you're interested in joining our private Facebook community for parents and caregivers seeking residential options, guidance and peer support for profoundly autistic adults or adults with complex needs - Click Here! 

Transcript

Mike Carr (00:04):

Welcome back to Autism Labs and today I want to tackle what is the biggest mountain every parent of a high support needs child has to climb and that is how to find great help. I personally know this pain deeply in over 30 years of navigating life with our own profoundly autistic, nonverbal son Michael, who has seizures, pike of behavior and all kinds of other challenges. Finding consistent reliable care has been by far our toughest challenge. Now when Michael was little preschool, grade school, family members were our lifeline, but as our kids grow into older teens and adults, this reality changes. Family love is unconditional, but family members aren't equipped to handle the intense types of behavior and aggressive behavior that Michael exhibited, like pinching, kicking, biting, and even punching in a safe clinical way. So at some point moving from willing family to a trained, committed staff simply becomes an absolute necessity.

(01:09):

So how do we find them? Well, before we look where to search, let's talk about who to search for. Autism Speaks notes that a great helper doesn't always need a perfect autism resume. Sometimes it's better to hire for temperament, someone who's teachable, who's patience, who's flexible rather than someone who has the resume and maybe comes in assuming they have all the answers and know exactly how to interact with their child. Because as we all know as parents, they don't know what makes our kiddos unique or oh so challenging and at the same time so special. So that said, our personal experience has shown that starting with people who really do get it, who do have some experience is a better way to go. It saves an immense amount of time. We want people who are already desensitized to sensory meltdowns to the aggressive behavior and sort of understand what real patience and repetition and truly providing safety looks like.

(02:05):

So here are seven paths to build your care team, how to find them. And we're combining some national resources here with some of our own secrets, some of our own trial and error that we've discovered. So number one, we'll start with a national resource because you folks are all over. It's ARCH's National Respite Locator Service. So you can go to archrespite.org. Arch is A- R-C-H-Respite all one word.org and look for their National Respite Locator Service. They've got some pretty cool resources for most, not all states because every state handles Medicaid and respite funding differently, but we found this pretty good launching pad for some good resources in most of the states. We've also found that people that have respite experience and training often really make for some really good reliable colleagues for after school on weekends or when you want to take that extended vacation.

(02:55):

Number two is one of our secrets, climbing centers. Now this may seem a bit weird, but bear with me. This was really a game changer for us. The culture of rock climbing is entirely built on patience, tenacity and mutual trust. As a climber, if you're belaying someone, you literally have to hold their life on a rope for them. So we found that climbers are incredibly strong, they're patience, they're flexible, they're adaptable. And at places like Crux Climbing Center here in Austin, some of the climbers have even changed their schedules to show up when Michael and his buddies are there as part of our John 13 community program. And some of them are interested in making some extra bucks. And so when you hire them privately, they really can make for some phenomenal high energy caregivers. Number three, parents, parents you know. Now we have to talk about mindset here.

(03:50):

Mindset you need to have as a parent is one of abundance and not scarcity. The abundance mindset says that you've got this great caregiver, this great helper for your son or daughter. There's no way you want to share his or her name and contact information with any of your friends who have similar needs because you need every hour they can give you. However, one of the things that we've learned is these folks like variety and they like to meet others that have clients like your son or daughter. It's like pairing them up. If you team up with another special needs family or two, your helpers can work together. This creates some camaraderie and some social interaction that they really do enjoy. It also creates some built-in redundancy. It prevents caregiver burnout and really gives you the extra muscle and support when those meltdowns occur. And we all know.

(04:37):

We all know meltdowns do occur however infrequent they might be. And when that happens, you need the team there ready to go. Number four, special ed paraprofessionals and aides. I didn't mention special ed teachers here. They're a great resource as well, but they often are more expensive. So the paraprofessionals and the aides might be a more affordable solution. So looking at the school system during the holidays, especially during summer break, which has already started here in Austin, paraprofessionals and teacher aides are the unsung heroes of the classroom. So they're already fully background checked by the school district. They're crisis trained and they're used to rolling up their shirt's leaves and doing all the dirty work. Plus, in many cases, they'll know your child. And so you already have a certain level of trust established with them. Number five, faith-based disabilities ministries. Some churches and synagogues and religious community centers have special specific needs ministries for this population or people that just have more challenges than neurotypical folks.

(05:37):

Now, the general volunteers we have found might not be ready for this intense behavior that our kiddos exhibit profoundly autistic, severely autistic level three autism. But often in these communities, you'll find someone who has the right lived experience. And what I mean by that is they might have a sibling or they might have a cousin or a nephew or a niece where they saw some of these challenges. And so they sort of got used to growing up how to deal with these individuals and the level of support and help that they need. And boy, if you find these folks, they often have a really deep intrinsic motivation to help. Number six, which is actually one of the most important universities and community colleges. Now, when you go after these folks, do not just post on the general college job board. What we found was the most effective is you actually contact department heads and professors and teachers in different specialties.

(06:22):

Special ed, nursing, psychology, occupational therapy, OT, speech therapy, ST. We got some incredible resources through the University of Texas here in Austin through the speech therapy department through the nursing department. I think we even have some folks from kinesiology and then of course special ed or behavior analysis. Position the job as a paid job. Students like get money, right? Hands-on clinical experience or coursework experience, not just babysitting. So when we partnered with professors, we ended up being able to offer students even course credit for a semester with our son. They came into our home, they collected behavior data while working directly with our son and learning those skills and they presented progress reports to their professors and to their students, their fellow students in the classroom. And we also found out this is an incredible way to discover diamonds in the rough, right? Students that really click with our son who we then could hire once the semester ended or on the weekends when they're looking to make a little bit of extra money.

(07:19):

And number seven, rebranded job boards. Now we've used Craig's list in the past. I think we've tried Indeed or specialized local boards, but you've got to start with something other than babysitter. You're not looking for a babysitter. You're looking for something that's a litle bit more challenging, professional titles to command respect and signal the complexity of job. It might alert the right kind of people that you're looking for. So titles like instead of babysitting, direct support professional, direct support professional or DSP, behavior support aid, autism respite worker, community support companion. Those types of titles often will get a better response to the right kinds of people so you don't waste a lot of time. Now here's the golden rule and this is going to sound tough, but I think it's just critical. You are not looking for one single savior to rescue your family. You are building a bench.

(08:08):

Ideally you want a full roster. A full roster means one or two lead helpers who can back each other up, one or two occasional weekend respite providers and an emergency backup option. Even if that emergency backup option is one of those family members we talked about earlier. Now, if you're listening to this right now and you're feeling exhausted and overwhelmed and like, there's no way this is going to work for me, you need to find hope from our own personal journey and those parents with similar needs in your area. I mean, we've been doing this for over 30 years. We have literally hired hundreds of helpers all ages, all backgrounds and we've had a lot of challenges, but they are out there. It does take time. It takes a lot of persistence. It requires turning over a lot of stones, but these professional, compassionate, rock solid human beings do exist and they are really looking for meaningful work and they may be very excited to meet a family just like yours.

(09:01):

So keep searching, build your bench piece by piece. And remember, you do not have to walk this path alone. If the resources that I've already listed are not helpful and you need some additional guidance, just shoot me an email. You can reach me at mike@autismlabs.com. Autism Labs is all one word and I'll try to maybe guide you in the right direction of another resource or two. Or if you have any solutions that I've missed, please let me know and I'll be happy to mention them on an upcoming podcast. So next week I'm going to talk about how you keep these folks once you've found them and hired them. And believe it or not, that is just as big a challenge and in some cases even more of a challenge than finding them in the first place. So please stay tuned for next week when we keep talking about this topic and until then have a wonderful and blessed week.

(09:46):

See ya. All