Around The Spectrum

Around the Spectrum - Welcome to Holland: Finding Beauty in a Different Path (with Michael Vassar)

• Wendy Manganaro

Share episode

When Michael Vassar’s daughter was diagnosed with a rare genetic disorder and later autism, his family’s journey took an unexpected turn. In this candid conversation, Michael shares how “Welcome to Holland,” Emily Perl Kingsley’s well-known poem, became a touchstone for reframing expectations — and finding unexpected beauty on a different path.

We talk about the early shock of diagnosis, the long waits for services, the power of parent-to-parent connection, and the little victories that make the hardest days worth it. Michael also brings insight from his work in autism care technology, offering practical tips for families navigating the post-diagnosis gap.

Whether you’re just beginning this journey or years down the road, this episode is a reminder that while the destination may not be what you first imagined, it can still be deeply meaningful — and you don’t have to walk it alone.

Inspired by Emily Perl Kingsley’s poem “Welcome to Holland.” 

Read Emily Perl Kingsley’s full poem, “Welcome to Holland,” here: https://www.emilyperlkingsley.com/welcome-to-holland

Support the show

Speaker 1:

Hi everyone. Welcome to Around the Spectrum, where parents, pros and those in between pull up a chair for honest conversations, grounded guidance and real stories about raising and supporting autistic kids. I'm your host, wendy Manganera. As a parent, marketing leader and longtime autism ally, I know how overwhelming and isolating this journey can feel. That's why we're here, because when we sit at the same table, we understand more and judge less.

Speaker 1:

On today's episode of Around the Spectrum, we're pulling up a chair with another parent walking this journey, not with a perfect plan, but with lived experience and a whole lot of horror. You'll hear how they navigated diagnosis services and the in-between moments no one prepares you for. Today we are on with Michael Vassar, who is a dad, husband and advocate for families raising children with disabilities. He and his wife, kim have spent the past eight years working in the children's disabilities community, work that began when their first daughter was born. Mike brings a unique dual perspective as a parent navigating the everyday realities of autism and as a professional in the technology space, where he helps provide software tools that support autism care providers. This combination of lived experience and industry insight has given him a front row seat to both the challenges and the incredible joys that come with the autism journey. Welcome, mike.

Speaker 2:

Hi Wendy, thanks for having me Very excited to have this discussion with you and talk about my the autism journey. Welcome, mike. Hi Wendy, thanks for having me Very excited to have this discussion with you and talk about my family's journey.

Speaker 1:

I always like to pull the shade back a little and say that Mike and I know each other from previous experience. When I was doing the show I thought I've got to get back in touch with him. We both work in the autism arena and he seemed like a great guest to have on because he has such a wonderful lived experience. Let's start with your journey. Can you share a little bit about your daughter, her diagnosis and how that moment shaped you as both a parent and a professional?

Speaker 2:

Absolutely so. My oldest daughter she'll be eight years old in about a month my oldest daughter she'll be eight years old in about a month she was diagnosed with a very rare genetic disorder called Bainbridge-Roper. She was about 18 months old. She ended up getting an autism diagnosis a few years later. Early on, we noticed developmental delays and we had a neurologist visits. She got MRI scans. We were doing physical therapy, occupational therapy, but it wasn't until we had genetic sequencing. We got a real diagnosis, which was both a relief to have some answers but also quite scary because we didn't know anything about Bainbridge Ropers and what that meant. I could talk a little bit about what that journey was like, but that is a little bit about Kylie.

Speaker 1:

Thank you. As a parent, when you go in for one thing and then you get a diagnosis that you don't expect, it's a surreal moment because you're like, but that's not why I'm here.

Speaker 2:

She was our first daughter so I didn't have a lot to compare it to. We would bring her into the pediatrician. My wife had an intuition there's something that's not right. But the pediatrician kept saying she's a little bit delayed, but there's nothing to worry about. I was almost like head in the sand, like everything will work out. But my wife was pushing like we need to get more testing done. Things like rolling over. She wasn't rolling over at this stage, wasn't sitting up when we pick her up at daycare. She didn't show any type of like awareness that mom and dad is here. She wouldn't make eye contact with those type of things. She wouldn't make eye contact with those type of things.

Speaker 2:

Certain people in our life kind of were like maybe you should get this tested and get a closer look at what's going on when we end up getting to the point of doing the genetic sequencing. I remember sitting in that doctor's office and she made a statement along the lines of today's, the first day of the rest of your life. It hit me immediately. I'm like, oh my God, she found something. She said Bainbridge Ropers, very rare genetic disorder, number 200 in the world, and that was super scary. But it also became very clear that the mission, the family, everything changed at that moment, both for the good and the bad.

Speaker 1:

There is something that changes instantly when you do that full circle and go okay, I have to do things differently. Now, In your case, which I think is amazing, you work in tech. That's how we met originally I was working in ABA and Mike was working in tech. We had a chance to get to know each other. Then You've said your career and your role as a dad have run parallel. What does that mean or what did that look like during that time?

Speaker 2:

2018. Central Reach is the electronic health record for autism organizations that helps run their day-to-day business. I didn't know anything about autism at that time. I didn't even know what ABA stood for, but I had a friend who was a BCBA working at Central Reach and said you should come.

Speaker 2:

We have open sales positions and I was looking to make a change at that point, so I ended up taking that job, and it's just one of those moments where the universe puts you in the right place at the right time. I was surrounded by clinicians speech pathologists, occupational therapists, BCBAs and they were a huge part of assessing Kylie and helping us understand the path forward with her delays and where to find therapies. So that was the moment where I had taken a sales job, but it ended up intersecting with the rest of my life. I was in the right place at the right time and ever since then, I've devoted my professional life to helping care providers in the way that I can, which is finding useful technologies that give access to care and make the lives of clinicians and the back office folks easier so they can focus on their clients.

Speaker 1:

When my son was diagnosed, I was working with adults with disabilities running programs, but I had never seen the other side diagnose us when they were young, but I really had never done work with early learning. It's very different than when somebody already comes pre-diagnosed as an adult and you're helping them through a different set of systems. I do think it did surround me with the right support, Even though I didn't work directly in that field. Everybody I knew knew somebody and was really helpful, so that was a blessing in disguise. We've talked about this and it's a huge reality If you are a parent looking for services and it's not all services, but certainly in the ABA field, which is probably one of the first things that the neurologist pediatricians if you have a diagnosis of autism, they may suggest ABA. It's a very common thing because it does work. But there are more children on the spectrum than we have services and BCBAs and that's a reality, and so there tends to be wait lists. Sometimes you even get an RBT and they leave and then you have another wait list.

Speaker 1:

So one of the things that you can help with is what the gap looks like of signing up for service and getting service between your child's diagnosis and starting, because it's a reality that you're not going to call and get an instant appointment. So, as a parent, what can they do?

Speaker 2:

Yeah, so you really have to be a self-advocate. We had a very similar experience. We weren't given a timeline. It was very open-ended but we were given, when we got the diagnosis, a list of local organizations to reach out to, and every single one of them said that they didn't have availability but we would be put on a wait list. And my frustration at that point was okay, we'll go through this intake process, we'll get you all the documentation, all the information that you need. That I can upfront, but there was just no communication to me or my wife about updates.

Speaker 2:

Luckily, my wife and myself come from the industry side, so we understand what ABA is, but for a lot of families that have no idea what they're about to get into, it's really important for these organizations to provide some knowledge of what the science is of ABA. There's a lot that families can do on their own as they wait. There's just interventions and tactics that families can have that they don't necessarily need a clinician right. They just need to be armed with the information of things that they can do on their own. And that was my frustration the lack of knowledge. And I would have to be super proactive with these clinics, calling in once a month and asking updates. It felt like I was just put onto an Excel spreadsheet my name, number, email and my daughter's name but I would be starting from point zero all over again. It was just so frustrating. I think families have to be self-advocates. If you go down the road of starting to Google autism and you're gonna end up in some scary rabbit holes. So I think it's really important to find credible information and ask the organizations that you are on a waitlist with to provide you with that information. They should be able to provide you that information and they should also be able to provide you with other clinics in the area so that you're not just on a single waitlist.

Speaker 2:

For my personal experience, kylie was like number 200 in the world to be diagnosed with this Bainbridge Ropers. But there was already a Facebook page. We joined families with Bainbridge Ropers and very helpful to talk to other families around the world who were going through the same thing. Sequencing technology became more accessible. You'd see new families come into this Facebook page. You would see many similarities to the families that you're having. You're making connections with the moms and dads and seeing how their children are progressing. There are great resources and ways to make connections online, but there's also a double-edged sword where you could go down some dark holes if you're getting bad information. So it's up to the families to decipher what's good information, and it's also up to the organizations to provide families with credible information.

Speaker 1:

I can't agree with you more. I can't tell you the amount of families I've come in contact that only call one agency because they think that's what they're supposed to do. The doctor gave me this referral and then they stop. But if the doctor is giving a referral out to every parent that gets diagnosed, I think the last stat in the CDC don't quote me on this is like one in 28 or one in 29. I think we're right about there.

Speaker 1:

If you have a census of how many kids are in your area, that's a lot of children seeking services at the same time and there may not be enough agencies to take that on. So it is important to keep calling every local agency. And the other thing you said which is important is Googling. My son did not sleep for the first four years. I don't know about your child. And then I finally was like, okay, it'll be safe, put him on melatonin. The child has none. So that was what I would do and we had less services. My son's 20 now. So I would be Googling in the middle of the night, going how do you get a kid to sleep? None of that stuff worked. You can go down the scary rabbit holes.

Speaker 1:

The other thing that you said which is really important is finding other parents who have gone through the same thing as you. I think that's important. My family and friends loved me. They loved my child. They didn't understand they had not gone through it. They were like let him cry himself to sleep. What's wrong with you? Or just discipline him more, or he's just being a boy. I got all of that stuff, so what?

Speaker 2:

This is from my experience. By joining that Facebook group, we had a little boy in our area who also had the same condition. He ended up getting ABA therapy at this clinic where my daughter goes. That was how we ended up finding the right place. It was through these connections that ended up leading us to exactly where she belongs and where she's thriving today. So that was making those connections.

Speaker 2:

The other thing is, during that time it's easy to withdraw from family and friends. They don't really understand what you're going through. Even before the diagnosis it's like, oh, she just needs to be disciplined differently or you're doing things wrong. And it was like people just don't understand the experience that my wife and I went through and it was easier for us to say we're not going to go to this birthday party or we're not going to go out to these restaurants. It's just easier to stay home.

Speaker 2:

The practical things that you could do is just continue to live your life and go out and do things, because giving your child that exposure never going to go well. You're arming yourself for another day. You're like all right, it's going to be a battle, but you have to continue to see people, to go out and live your life and expose your child to outside world. Over time these things improve. If you stay home in your own bubble, nothing gets better. So that's like a practical thing that I look back on and I remember how stressful every day things like going to the beach or restaurant but you have to go out and do those things, you have to put yourself out there.

Speaker 1:

I always go back to this one moment. My son could not take changing the schedule. My husband worked away a lot. I had to go get pull-ups after work one day. I got him in the store we're doing great and get him in the car. He bucks in his car seat for 45 minutes. 45 minutes, no lie, like. This child was like nope, not going back in, will you change the schedule. And so I'm patiently trying all of this stuff and not realizing, because my son is literally screaming like I'm killing him. I look over and there's a group of moms just standing there making sure I wasn't harming my child and I was like you just take that side of this is what this is. And to other parents or other people it can be very jarring if they don't have the knowledge and it can be very isolating to feel like I'm getting judged by the rest of the world. And that's why I think those connections are so important, because it lessens that judgment.

Speaker 2:

Important because it lessens that judgment. Yeah, just sharing with other families talking about the parking lot situation or meltdowns in stores. Eventually you part into it where you don't care about what other people are thinking, which is nice. But sharing those experiences with other families who can relate is very cathartic.

Speaker 1:

I'm skipping ahead because we've been having conversation about it, but I think this is a really important piece of it too, because, as I'm sure you went through, when the diagnosis first comes out, you start for lack of a better word tripping in your head about what that's going to look like for the future. Does ABA work? Does OT work, or are they making progress fast enough? You just play this trip in your head Are they going to be able to do this and this? How do you balance that hope with reality so you stay grounded?

Speaker 2:

expectations of parenthood was kind of like thrown out the window, and my wife found this poem. It's called Welcome to Holland. I don't know if you've ever heard of it before, but it's about parenthood and a family getting ready for a trip and they're going to Italy, but the plane ends up landing in Holland. It's not at all what they expected, but it's also beautiful in a completely different way than what you originally thought it was going to be. I think that's the hardest part. You could still obviously have hope, but you can't have these hardened expectations of what your life is going to be, because it changes.

Speaker 2:

Kylie's still very young. She's only eight years old. If I look back sometimes it's hard to remember how far she's come. It's incredible, and I have no idea what the future is going to be for her, how independent her life is. I can't help but think about it all the time. Is she going to need us for the rest of her life or will she have some independence? And I honestly don't know. I have hopes but I don't have expectations, because it is what it is and either way, it's going to have challenges, but it's also going to have beauty to it and it's going to be, like you said, a trip to have beauty to it. And it's going to be, like you said, a trip, and you have to have this kind of mentality of you're on a journey and you're going to do whatever you can to love your child, be there for your child in any capacity that you can and just hope that there is some sort of independence for them. But if there isn't, I'll be there as long as I can be for them.

Speaker 1:

But if there isn't, I'll be there as long as I can be. I think that's beautiful. I've hosted parent support groups and one of the biggest things is that the milestone may or may not be hit the reality, but there's tiny celebrations of what is being hit If you stay in the realm of things they are accomplishing and comparing your child to your child or other people's children.

Speaker 1:

I think there's a lot of beauty in going. They aren't where they were two weeks ago, but I think as parents, we sometimes want to go. Well, they're not moving fast enough, but they're really moving in a beautiful speed for themselves.

Speaker 2:

Yeah, you celebrate the little things. When you're in it day to day, it's hard to know how much progress you made. We like to track the milestones. We write them down. We have a shared note in our phones and we look back on it. It's really incredible just how far she's come and you kind of take it for granted. But you look back and you just remember, especially during those COVID days it was so stressful you didn't know how you were going to make it through another day. But you make it through and you celebrate those wins.

Speaker 1:

Absolutely. A couple of last questions. One is Hans working in healthcare tech and autism advocacy changed how you see solutions for families in the waiting gap for families in the waiting gap.

Speaker 2:

Yes, so one of the biggest constraints right now is the amount of RBTs. The amount of BCBA just can't keep up with the demand. Every couple of years they come out with new diagnosis rates. When I first started at Central Reach in 2018, it was one out of every 150 children. Now it's down to one out of every 28 in the United States. These wait lists are growing and growing in. The amount of clinicians can't keep up with that pace.

Speaker 2:

So by being in this tech world, I'm able to get a view of some of these operational constraints that are slowing down access to care. So I've always found that within the ABA space, technology adoption has been slower than broader healthcare world. So I've always tried to find technologies that are being used across healthcare that could be brought into the ABA space, and one of those was a intake platform that could engage with families in that intake journey. So, every step along the way getting documentation over being able to engage with families in that intake journey. So every step along the way getting documentation over being able to communicate with families, giving them information. Now I'm with a company called TheraDriver, which is a scheduling platform and, believe it or not.

Speaker 2:

Scheduling in the ABA world is super complex because only certain types of clinicians can work with certain types of clients. You're seeing these kids on a day-to-day basis and there's a lot of cancellations, whether it's families canceling due to illness or staff getting sick. The last thing you want to do is cancel on a family and say we can't provide you services. Today, our platform gives the ability to quickly find available staff that are paired up with this client so they can work with them that day instead of having to cancel on them. I feel like there's a lot of technology, both on the clinical side of things, but also on the operational side, to help give more access to care. If you can get those schedules tight, more kids can come off. The wait list Groups are opening new centers and services all the time, trying to keep up with the demand, but they have to get the operations, the logistics of running a center, very streamlined in order to be able to see all these families on that wait list.

Speaker 1:

And I think that's incredible, because part of one of the things is that RBT is when they work day in and day out with the child. There's a strong possibility of burnout in this field, and so having a tool to say I need a mental health day and I know that's not what families want to hear they like the consistency, but if there is somebody else who is also paired with the child that can step in, is fantastic. We're all not going to show up on our best day every day and it's better to have somebody who's already paired with the child and a quick schedule change, which can be good for children too, because there's value depending on your child's case being able to make this change. It can be a growing experience for them too. I love the fact that your service is doing that. So one last question. It's been a pleasure having you on the show. But one last question. I call this the wisdom seat. If you could speak to a parent just leaving the diagnostic appointment today, what would you want them to hear first?

Speaker 2:

Welcome to Holland. It's really your expectations. Have an open mind, celebrate little wins and be an advocate. Really push for the information. Connect with other families that you can find, whether in your community or online. Share stories. It's a cathartic process to talk about your experiences, hearing very similar stories from other families.

Speaker 1:

Well, thank you so much for being on the show with me. It's been a complete pleasure getting to know you more and your story and your family's story. I'm sure it will help families out there. I hope everybody has a blessed and beautiful week and celebrate the small wins.

Speaker 2:

Thank you, Wendy.

Speaker 1:

Thanks for pulling up a chair at Around the Spectrum. Today's conversation helped you feel a little more seen, a little more supported or just a bit more grounded. We'd love it if you'd subscribe, leave a review or share the episode with someone who gets it. Remember, none of us have all the answers, but when we sit at the same table, we understand more and judge less. I'm your host, wendy Manganiello. Until next time, take care of yourself and each other.