THE SENSORY MADE SIMPLE PODCAST

Transcript

 
Welcome to Sensory Made Simple, a podcast dedicated to helping moms figure out how to understand your child's sensory needs and how to support them.

Whether it's tackling meltdowns, eating new foods, or just getting through the day without feeling completely drained.

Hi, I'm Dr.

Sam, a pediatric occupational therapist and busy boy mom.

And each week, I'll share simple, realistic tips that fit into your busy life.

Because believe me, I get it.

Adding one more thing to your plate feels overwhelming enough.

No complicated terms, just easy to follow strategies to help your child feel calm, confident, and understood.

So grab your coffee, chances are I've got mine too.

Pop in your earbuds, and let's figure this out together.

A little note before we begin.

Please be advised that this information in this podcast is not medical or occupational therapy advice, and is just for general and informational knowledge.

Okay, let's get to the show.

This is a really special episode.

Today, I interviewed Michael Pereira, founder of The Autism Voyage.

Michael is not only a financial professional who helps parents of special needs children navigate things like insurance and future planning.

He's also a dad to an autistic child.

So he truly gets it.

And in this episode, he shares all about what it's like to juggle daily life while also trying to plan ahead and make sure your child is supported long term.

From struggling with transitions to dealing with the grief that can come with the diagnosis to supporting siblings, Michael was such an open book and shared his personal journey with so much vulnerability.

And I really think his story will help so many of you feel so much less alone and more hopeful as you learn how to support your child too.

All right, let's get to it.

Hi, Michael, I am so excited for this chat.

I mentioned to you that I have never had a parent come on here before to share their journey.

So I think this is going to be just so amazing for all of our listeners.

They have already had a little intro to you in the beginning, but let's kind of go back and tell us a little bit about who you are.

Of course, of course.

So thank you so much for having me for this opportunity.

So again, Michael Pereira, I'm the founder of The Autism Voyage.

It's a blog.

It's a newsletter that basically caters to parents who are going through a lot of different challenges, you know, phases.

I would say pre-diagnosis or post-diagnosis.

And it serves as a resource at the end of the day.

Everything started.

I came from corporate.

Meanwhile, I was in corporate.

Obviously, I want to build my life around that.

I would say intense work ethic.

So, my wife wanted to build the American dream.

So, got married, bought a house.

We got pregnant with Christian, which is our first born.

When he was around one year old, we started seeing symptoms that we knew needed to be addressed.

But obviously, like any parent, I would say we were in denial.

And not only in denial, but also listening to family, friends that would say, hey, don't worry, you were the same, which is dangerous, by the way.

Throughout that phase, we did not, we knew that it needed to be addressed, but we tried to see if with time it would fade away.

But obviously COVID came by, was able to stay here, no trouble.

And a lot of the symptoms reduced, but when COVID released, that, you know, that transition period that I needed to start traveling again, a lot of the symptoms we saw from hitting his head against the wall, tippy-toeing, aligning stuff, flapping, everything just returned back in full force.

It was basically more than before.

And obviously that transition period was very tough on him.

So started looking for different ways of being able to see if I can do the same, travel less with other employers.

Didn't happen.

And at the same time, started looking for blogs.

All the blogs I saw, I was seeing were eight years old, seven years old, nothing new.

And I started looking also for my own financial advisor.

Everybody just wants to sell me something or recruit me.

So there were a lot of things happening.

And I just decided, you know what, let's see if I can leave the corporate world and be able to build this type of centralized hub where every family can go and feel that they're not alone, I would say.

I hope I wasn't too much.

No, no, not at all.

I think that was a lot of really great information.

It is a very lonely journey from what I've heard from parents, especially in the beginning.

And there's a whole ton of emotions that come in with that.

And you mentioned kind of that denial and that grief and the confusion and everything that you processed in between.

How did you guys start to go back to, okay, I think this is something we need to address?

How did you go from that denial to, okay, I think something else might be going on?

Yeah, it wasn't from one night to another.

I think it took time.

But obviously, when COVID released that, those symptoms returned, and we noticed it was something that was harming him, not, you know, it wasn't a behavior that he was just fading out.

It was something that really, really needed to be addressed because, again, he was harming himself.

That's where we said, you know what?

It's coming to a point that this is not fading out.

You know, whatever we believe, we believe, but we need to seek a professional.

And that's where we started looking for guidance.

Obviously, we got him diagnosed off of the bat because we knew everybody that saw him, even though he's high functioning, he looks, but obviously at that point he needed, you could tell that something was there.

So I think the difficult part was to go from that denial phase to acceptance phase and understanding at least our definition of denial is the reflection of how selfish we were because we were only thinking about how we felt, how we believed that our American dream was going to go out.

So we went through that phase and it took some time, but obviously what really helped us was just leaving everything, at least from us, we were faith-based.

So leaving everything in God's hands and just seeking professional help.

And not speculating.

And where was that first place that you decided to seek help?

I'm in Miami.

So there is, I think that we were going to a pediatric center, like a clinic, but then we started seeking like a hospital.

I think it's called Nicholas.

So there's a couple, but we went there.

And that's where basically from the get-go, we were able to get the diagnosis.

Yeah, they are amazing.

Fun fact, that is actually one of my first employers.

Okay.

So, you know, they're good.

Very familiar with them.

So you started there.

And then you have mentioned to me that you also ended up in occupational therapy, speech therapy, down the road.

What has that journey look like for you?

Yeah.

You know, sometimes even for us, when we talk about autism, you know, everybody starts ABA, right?

And not necessarily that's the case.

And forever who's listening, you know, I would seek that if you're getting that diagnosis and you're getting those evaluations, you should, you know, seek other, not only rely on ABA.

In our case, you know, there's some things that, for example, if there's speech delay, not necessarily it needs ABA.

ABA cannot fix that, right?

It can be a compliment maybe if there's any behavior issues, but at the end of the day, there should be a speech therapist.

It's the same thing for occupational.

At one point, he had a lot of issues with fine motor skills, like grabbing a pencil, opening a zipper, the ziplock, you know?

And what we noticed is that when the OT was being addressed, there was less triggers because he didn't get frustrated because he couldn't hold something or, because if he had those triggers, then ABA could come in and, you know.

But if you can address those fine motor skills that you know that could trigger frustration, could trigger a meltdown, obviously work on that too, right?

So I would suggest any family that's listening that, you know, not all, not, there's not one size fits all, you know, to seek obviously other, even if it complements your current plan, but just seek other professionals to see if there's a way you can strategize that, you know, plan in a way that helps him from a holistic view.

Yeah, I love that you mentioned how the meltdowns and the, you know, kind of the big responses a lot of the time come from that frustration.

So much of the time, we talk to parents who are so upset that the meltdowns are kind of constant, but their child is frustrated because there's something going on that they can't do, or they can't communicate that they need.

And it does really help when you find out those little triggers and you can address them.

Yeah, I would say again, you know, just deep diving in and trying to incorporate those professionals into the plan, because it's, from my side, financial, right?

Everybody talks, hey, what's better, a 401k or the, I don't know.

You know, but what I can tell is every tool is good, but it depends on your plan, right?

Like the same thing for the child, not everything should be ABA or everything should be one.

I think it's a compliment of everything.

Yeah.

And you also mentioned that transitions were really hard.

And that is something that we see all the time, these changes in going from doing one thing to going to doing another thing is hard.

So have you guys found anything that has helped with that since starting your journey?

We have.

We have.

And again, what I'm sharing here is just what works for us, not necessarily works for everybody.

But something that's helped us a lot is like prepping him before.

Like, hey, let's say if he's going to take a haircut, days before we're putting YouTube haircuts, we're putting music that has to be with haircuts.

One time, I got my, you know, my...

I'm thinking Spanish talking, the, you know, the razor, the machine, and he got it and just hair...

Yeah, started like hair cutting myself.

But, you know, starting to incorporate things prior that event.

And it helped us a lot because he knew what he was going for, right?

Opposed to before that, before we would do that, we would just take him and, you know, put, give him the cell phone to see if he would calm down during the haircut.

But prepping him before, I think, is the game changer for us.

Oh, that's amazing.

Yeah.

At least for us, it's helped us a lot in everything from, hey, you're going to jiu-jitsu, so you're going to eat.

From there, you're going to do this, homework, and it's like putting almost like a routine without being a routine, right?

So we started that and again, it's been amazing, the results.

Do you mostly talk him through that?

Do you guys have a visual schedule that you use, where you show him the things?

Or is it mostly like you tell him and he knows, okay, I know this is happening next?

We did do visuals when he was like brushing his teeth, for example.

So prior that, he didn't want to use the toothpaste.

So obviously, we bought toothpaste without mental.

And then we started incorporating, but we use visuals for that part.

But just for the day-to-day basis or things that we do outside of home, like a haircut or going to swimming classes or something, we will prep him because we just thought, I'm not going to take a board into a barber salon and start showing him the visuals.

So when it's something outside, we will always prep him.

If it's something within the house, we would use visuals.

And something that you had talked about when you and I first spoke is that you and your wife are really a team about this.

And I loved all of that.

I thought that was so aspirational and so inspirational that it's not one or the other.

So a lot of the time, I think you had mentioned that when you are working with families, they might have mentioned to you that one parent kind of takes on the role of doing the therapies and doing that, but then the other parent sometimes isn't as aware of what's going on.

I see that a lot.

What have you guys found?

How have you gotten there?

Yeah, you know what, it took us some time.

Even though I'm coming here and very appreciated for the opportunity, but it's taken us time to be here.

It's in Christian Style 7.

We've been at it, I would say, six years in a row.

So it's taken us time to be able to be as stable, I would say, as we are.

But I would say just communication itself, because I do see families that in some cases, I see dads more, they know more their sales quota than their son's progress, right?

And that shouldn't be that way.

I was there too, so I'm not judging anybody at one point when I was in corporate.

It happens to me.

But it comes to a point that you really, if you really wanna see change and you really wanna see progress, you need to deep dive both parents.

Regardless if they're married or they're not, both parents need to be aligned because that's where you, true therapy begins at home, right?

Because I've seen other cases that you can have an RBT or anybody just providing a therapy based on the plan.

For example, if there's a therapist trying to take away the tablets, and then you come in and when he gets home, you give him the tablet, you're not doing anything, right?

So you wanna make sure that both parents, as parents, you're both aligned with the main goal, which is to help your child strive and thrive, right?

And the best way is to, if communication is key, being able to understand that whatever you're doing, as long as you're aligned, there's gonna be a benefit out of it.

So I would say again, if there's no perfect formula, but being aligned and being intentional is I would say the best.

And how do you guys go about communicating these things with each other?

Because it's a lot.

I mean, when you're thinking about going to therapies, going to school, doing all the things, or even if you're homeschooling, that's a whole extra.

But how do you guys go about making sure that you do communicate it with each other?

Did you sit down and go through?

I know you have an amazing handout that you showed me that is very comprehensive, that can help parents stay on the same page.

But any communication tips?

At first, you know, again, it was tough.

There's nothing, I cannot come here and say the opposite.

But I think when we started to see results, because we were aligned, we were then, you know, first it was a routine, now it's a habit, right?

First we say, okay, let's do this.

At one point of the day, let's start walking, for example, with Christian and meanwhile we walk, let's talk.

Then the same thing for dinner.

You know, no cell phones, nothing.

Let's just, as a family, let's talk, even if it's a, even if you don't have anything to talk about, let's just share this time together, enjoy ourselves.

And I think with that, you know, change in during the day, everything started, I would say, resonating and we saw results.

And then we started talking about the results, how we can get even better results.

And you start, it's like going to the gym, right?

You start, and maybe at first, it's going to get hard, but as you maintain consistency, you're going to start seeing results.

So the same thing here.

So when you communicate, just try steps, a little steps, see if you get results, see if your communication style is the way you want it to be communicated and so forth.

But for us, it was just starting with something.

Yeah, and something I tell parents all the time is that, especially with OT and feeding and sensory, those results can be painfully slow in the beginning, especially.

But holding in there and really until you find the right thing for you, it does take a lot of trial and error, which I'm sure you guys went through.

But when you get those results, it feels so good.

Yep, 100%.

But like anything in life, even in the business, if you're doing a business, take time.

When you're studying, it takes time.

Everything in life just takes time.

There's no shortcuts, right?

Same thing here.

Yes, there are no shortcuts.

And it is very emotional.

Parenting is emotional, especially as you're going through this process.

So how do you and your wife, how have you guys figured out how to support yourselves through this too?

Yeah.

It's very hard to be a functioning parent while being exhausted.

And I think it's understanding each other, how do I react when I'm exhausted?

Or how does she react when she's exhausted?

Or how do we both react when Christian or Amanda are exhausted, right?

It's just understanding each other and being able to have like, in my case, you know, I'm a very passive guy.

I don't like, you know, so I just walk.

I love walking.

I love reading.

So maybe that's my way of, you know, when I want to have my own piece, I would say walk or hear music or something.

My wife is more on the cooking, you know, she loves cooking.

So, you know, she starts.

So whenever we have our moments that we need our space, you know, it's tough because it's not that we can leave our Christian with the grandparents and so forth.

They can, you know, because even though the grandparents, my mom is the best grandmother there is, but physically she cannot take care of him because he's too hyper.

He's physically, he's physically demanding.

So, you know, we gotta work with what we have here.

So again, if I need to walk, I walk with him.

Meanwhile, my wife stays here or she starts cooking.

And, you know, we just work around it, but we do find our own spaces within the day or within the week or within the month to just, you know, wind down and just get like a recharge.

Yeah.

And something you just mentioned was that he can't go with the grandparents.

And I'd love to delve in a little bit to kind of that financial side of things, the insurance planning sides of things.

Because there are some things that are different when it comes to raising a child with special needs.

When you're thinking about planning for your future and planning for their future.

And can you tell us a little bit about that?

I will be honest, insurance and planning are not my forte.

So please educate us.

So the reason why I focus on insurance planning, I don't do really financial planning because I don't do investments.

But finance, insurance planning for me builds a foundation.

Like for example, when in our case, I don't know and it's a hard truth that I don't know until when, if Christian will ever be independent, right?

If he will ever be able to make a decision by himself.

I don't know.

Hopefully he will.

We're doing everything we can.

But I don't know if by 18, 40, 20, or even next year, you know, I don't know.

But what we can do is plan in that type of different type of scenarios based on his growth or based on what's happening throughout the family, right?

So in our case, when we talk about insurance planning, we talk about more around the parent.

So for example, Christian depends on me 100% of the time and I get cancer.

I get a stroke or in a car accident.

I'm two years out.

What would happen?

Who would replace that income?

Usually, when you go to employers, they have short-term, long-term disability, but usually they fall short.

Or you change health insurance every year, so that changes as well, right?

So you want to make sure that you have something that replaces your income if you get an illness, a condition, an injury, because you don't want to concentrate on how you're going to pay the house, if you want to concentrate on recuperating.

That's one.

Second would be using a special needs trust.

Again, you may not use it because as time passes by, maybe your son doesn't need it anymore, or daughter doesn't need it.

But you do want it just in case, because if you do have that child that has any type of government benefits, and obviously you have a life insurance, you have properties, and obviously the family inherits that, it becomes an issue because that family could be considered a high-income earner, right?

But if it goes into a trust, obviously it has its own instructions there, and it's not considered in some cases dangerous for those benefits.

And I would say the third one is long-term care, because again, I don't know until when.

Maybe Christian is 40 and he still needs support, but let's say at that time, I'm 80, I need support, right?

What would have, who would take care of me?

Assessing living facilities, nursing homes are becoming very expensive.

So this type of coverage would cater, would offset those expenses if you would need it later on.

So it's building a foundation, and it's not only acquiring those, it's having a conversation, because for example, the other day I was speaking to a lady, she says, oh, I already have a policy, I'm good.

I said, perfect.

Now, one question.

Does that policy also consider a guardian?

She's like, what do you mean?

I said, well, because if you have a child, then requires support.

For example, if my brother needs to now assume responsibility for a Christian and he may need to leave work, I don't know who's going to give him his income.

So you want to make sure that at least that's a topic that's considered when you're acquiring these types of policies.

It's not just transactional, it's more of having that comprehensive view to be able to make sure that it fits in different types of scenarios and that you're covered in any of those cases.

These are really tough conversations to have.

A lot of parents, I'm sure, are putting off.

Yeah.

We're just talking about scenarios of obviously the parent and there's a special needs children, but for example, in our case, there's Christian who was diagnosed a couple of years ago, but there's Amanda that hasn't been diagnosed.

We want to make sure that the upbringing, obviously from that point of view is equal, that she doesn't feel left out or vice versa, but also from a financial perspective that both are covered, that both see the benefit in their own way we approach it.

But those are the type of conversations I would say it's very needed.

I think it's needed in any family.

Yeah.

They're so important.

Especially when you don't have a guide, there are a lot of mistakes that I'm sure can be made from a financial perspective.

What other types of mistakes are you seeing happen frequently?

I know mistakes.

I would say that there's a lot of parents feel that they have time.

And obviously, they don't.

When you're talking about special needs and thinking that you have time, as time passes by, everything gets more expensive.

Because obviously, you're at risk of something happening to you.

Thinking that your employer coverage is enough.

You know, there's a lot of other parents that also believe that they're in the mindset of doing them themselves.

They buy the policy in line without talking to anybody.

They do all these movements.

And it seems like they're in cruise control, but they're going the wrong way.

You know, and later on down the road is when they're seeing the surprises.

You know, I would say for all these parents, these parents who are practicing that, you know, it doesn't mean that going into a conversation with an advisor means that you're committing to something.

I think it's having that conversation to just understand where are you and what in fact it's needed based on your current state.

Yeah, and just bringing light to some of these questions that you probably have never thought about before, never crossed your mind that you're like, oh my gosh, wait, I need to think about a guardian, right?

Like you need to think about these other things.

Happens a lot.

Yeah, especially, there's so much you don't, I always say you don't know what you don't know, right?

Especially from this, this aspect of things.

Yeah.

Yeah.

And we see, I see it a lot.

I see it a lot.

So hopefully, you know, parents who are listening to this, you know, just having a conversation makes a total difference.

And can you talk a little bit about the checklist that you shared with me because it was very comprehensive and I think a really nice, simple way to get started.

Yeah.

I'll share with you the links so you can put it there.

So there's, we have different types of resources.

We have a checklist of insurance planning to basically make sure that you have what we consider, I would say, or what I consider like your safety net, like that foundation, do you have savings?

Do you have estate planning from a legal perspective?

If you have all these coverages from an insurance perspective, if you own a business, do you already have an exit plan or you have a succession plan?

If, do you understand all your employee coverages?

Usually nobody does, right?

So it's a checklist.

So if those parents were reluctant to talk to somebody, at least the checklist helps them understand, okay, there's something that I need to address, right?

That's one.

We have a Letter of Intent, which is just a document that it's a profile of the child.

In our case, for example, Christian, he's allergic to peanuts.

He cannot hear the blow dryer in the public bathroom before.

Now, he can now.

The blender, you know, sensory stuff.

And in that document, the Letter of Intent, basically it's all his routines, his triggers, his therapist contact information, his physician contact.

Everything is there in that document.

Why?

Because not necessarily I pass away, but let's say I'm with Ellie, my wife, in the hospital and somebody needs to babysit him.

With that document, they're going to know what to do, what not.

And then we have an ebook for siblings, for parents who have siblings that, again, like our household, one is diagnosed, the other one isn't.

You want to make sure that there's a lot of mixed emotions when you're raising both children.

So you want to make sure that there's no jealousy, there's no pride, there's a lot of things that happen because you want them to feel valued, but at the same time within their own strengths.

So those are the resources that we do have.

Yeah.

And I will link all of those in the show notes.

And I'm so glad that you circled back to Amanda, because I'd love to know, what is something that you guys do to help her feel more connected to Christian and to help with kind of that sibling aspect of they're going so much into caring for him?

How do you also support her as well?

Yeah.

Oh, Amanda's amazing.

Every time she sneezes, a tear comes out, but she's the best.

I would say with Amanda, she's three now.

Christian is seven.

We try to incorporate her in anything we can, but also give Christian his space and also her, right?

Because she's also having her own speech.

I would say challenges.

We believe it's because Christian just started talking a year, year and a half ago, so maybe, maybe she didn't practice enough or hasn't been able to practice with him because right now you say to him, hey, how are you?

He's going to say comfortable Panda.

He's not going to have a conversation.

So we believe it's that, but we just try to incorporate her as much as we can.

But also understand that she's too little to maybe even understand.

So again, it's trying to, and everything we try to do is more playful, right?

To see that, incorporate her, but in a playful way that she feels that she can do something or help him in anything or so forth.

So we try to do that as much as possible.

Yeah, it is hard when there's two.

My husband and I are watching everybody with their second kids right now.

We're still on our first.

And I'm like, whoo, dividing between the two is hard.

It's hard.

It's hard.

Yeah, it is.

And when you have one that requires a little bit more attention, it's harder.

It's a whole different kind of hard.

And you share a lot of this over on the Autism Voyage, which we only talked about a little bit.

Can you share a little bit more about that and what parents can find there?

I clicked around a bunch and there is so much good stuff.

Yeah, it is.

It's a blog.

It's a newsletter.

But right now, I think we have like 55 blog posts.

And it talks to everything from music therapy, from aquatic therapy, from haircuts, sensory issue, martial arts for special needs.

It talks.

We just wanted a place where anybody can go.

Any parent that's going through this, obviously, journey can go and feel that these topics resonate with them.

And also, it's a newsletter.

It goes out weekly to just share as many resources with parents that, again, it's tough because I would say we, as parents, we're always in survival mode, you know, and we go from survival mode to autopilot mode.

One time I went to, there's a supermarket here that's called Publix, and I got to Publix one time and I called my wife, Ellie, and I said, Eddie, I don't know how I got here.

Now, I knew I was in the park, but I was so overwhelmed that I don't remember how I got there.

So you always go from survival to autopilot mode, to protection mode, and you focus so much on the child and lose focus on yourself that, you know, it's hard.

It's hard.

So that's why the main goal of the blog is to help families, you know, not feel so alone, I would say.

And I have one more question for you before we go.

And I will link everywhere so that you guys can find Michael and get right to him.

But if you could go back in the first few months after diagnosis before diagnosis, what would you tell yourself back then?

What would you say to you now?

You know, not to be so selfish, you know, this is temporary, as long as you're consistent, you're going to see progress.

I think the ego part from a parent perspective is something that you need to just let go and just incline yourself to the professionals, also incline yourself to if you have a good feeling, follow it, right?

But just don't get let ego get in to the way.

You know, it happened to me.

And again, after some time, it was, you know, you got to let it go and trust God.

And that's what we do.

But we did.

But I would, you know, if I would need to talk to myself a couple of years ago, I would say that, you know, just, just leave it and just do whatever you can with what you have.

Yeah, go with that gut.

That's it.

Well, Michael, thank you so much for joining us today.

I just, I know how impactful this is going to be.

And of course, thank you so much for having me.

Thank you so much for joining me today on Sensory Made Simple.

I hope you're heading off with a little extra confidence and some easy ideas to tackle those sensory struggles ahead on.

If this episode was helpful or gave you a tip you can't wait to try, it would mean so much if you would share it with a friend or leave a quick review.

It helps more moms like you find the show and support their child too.

And remember, every small step you take makes a big difference for your child.

You've got this and I am cheering you on every step of the way.

See you next time.