Finding Your Voice: Supporting Complex Kids with Community and Courage

Hello, my name is Mark Taylor, and welcome to the Education on Fire podcast, the place for creative and inspiring learning from around the world.

Listen to teachers, parents and mentors share how they are supporting children to live their best, authentic life and are proving to be a guiding light to us all.

I'm trying to reach these mamas that are just struggling and they don't know where to go and it doesn't matter where you are in the world.

We're here.

We're here.

Expect the miracle to happen because it will come together.

You will find yourself.

It's going to be hard, it's not easy, but just expect that these things are going to come together and you're going to figure it out.

When you get in a community like that, even if you only know one little thing that you can help one other mom out there that's dealing with this, it brings that joy that you can't really even explain to people.

You have to empower yourself to be that advocate for your kids.

So, I mean, I love that acronym, the fire.

I love it, everything about it, because you have to have feedback.

You have to be inspired to do it, even when you're not wanting to do it.

The insurance companies, you have to learn how to speak their language because if not, they're going to deny everything that you need for your child.

The one advice I would give to a mom right now is don't forget yourself.

It is so easy to just give everything to these children.

You give everything to them because you love them so much and you want them to do well.

But if you forget about yourself, if you're not well, they're not going to be well.

Hello.

And that was Michelle show id, and she's talking about collective wisdom for complex kids and how her support group and the work that she's doing is helping mothers and parents out there who need that extra bit of understanding that we all need.

I think, when we have a complex child that we need to navigate through the system.

I really hope you enjoyed this conversation and a big thank you to the national association for Primary Education for their continued support and sponsorship of the show.

Hi, Michelle.

Thank you so much for joining us here on the Education on Far podcast.

It's great to chat to people from around the world, but I think there's always a universal kind of message which is about how we're supporting people, especially how we're supporting our children and being a voice for ourselves and our families, which I think is such an important thing.

So, yeah, thanks so much for being here.

Thank you for having me.

Mark, this is awesome.

I love it.

So can we start.

Give us a bit of a background about what's your mission, what is it that you're so passionate about, and how that obviously is then sort of related to your family.

So I have what I like to call a complex kid.

And when you have a complex kid, you know you have a complex kid.

Everybody asks me, what is a complex kid?

I'm like, if you have one, you know one, you know what it is.

But my son has.

We just recently found that he has a genetic disorder.

It's called TBR1.

And he is 1 out of 190 in the world as of right now with this diagnosis.

So for the past 10 years, we have gone through, as you can imagine, all sorts of testing, trying to figure out why he had adhd, where all of those things came through, why he wasn't learning, why he couldn't speak.

And so we are going into.

We are actually in fifth grade right now, and we're still not writing or reading, but we now know what is causing all of that.

And TBR1 is the genetic disorder, and it causes intellectual disabilities, ADHD, epilepsy, OCD tendencies, autistic traits.

It has a whole list of diagnoses that you can get before you find out about TBR1.

Right.

So what I started once going through this, I became his best advocate because as a mom of a child like this, you have to learn how to advocate for your son in schools, with the.

With the medical doctors.

In anything that he does, we have to advocate for him.

So I'm trying to teach moms to become that for their children, because we can't expect other people to do it for us.

We have to take it on our upon our hands to actually become that person for them.

And I think for me, I mean, I've not been through this particular situation, but I have been, you know, through illnesses and people within our family.

You kind of hope that the medical profession or the people around you are doing everything they can to support you, give you the best advice.

They're sort of looking after you, which they are to the best of their ability.

But they're doing it for tens, hundreds, thousands of people as well.

So the people it really matters to are you and your family.

And I think it was when we sort of certainly had that sense of if we want something done or we've got a question, or we feel like we're.

We need to ask again, actually, it is you that needs to do it.

And that just sounds exactly what you've been able to do.

Yes, I, you know, as good as the doctors are, as good as the therapists are, they can't do it for you.

And what, you know, they're looking at the lens of what they do.

So if you go to a speech therapist, that's her lens.

Right.

She's looking at you as a speech therapy.

And here's what you need to do.

When you're going to a geneticist, they're going to look through the lens of a geneticist.

So who's going to put it all together?

We have to do it.

Nobody else can do it unless.

And even if you hire somebody, that person won't be able to do it.

Yeah.

So, yes, we have to become that person for them.

And I guess the other thing is that, like you say, there's always these lenses from people that are helping you, and you're the only one who really stands in the middle and is able to.

Yes, I've got all of this.

I actually, I understand all of those things because I'm living it, I'm breathing it, I'm seeing it every day.

And that makes a really big difference in terms of what happens.

And then, like you say, pointing people in the right direction.

And I guess the reason that you've been able to sort of help other people is that you realize that you needed that extra support or that you wanted a community that was going to help you rather than, I guess, literally sort of pulling your hair out, thinking, I don't quite know where to go or what to do and how I can even get the support I need, let alone for my child.

Oh, it's so true.

You know, when you first find out that your child has something, you have to start searching.

But who knows where do you go?

Do you go to a physician?

Do you go to.

Usually you go to a pediatrician is your first line of, you know, questions.

But most of the time the pediatricians don't even know where to send you to.

And so it's.

You have.

There was such a need.

I used to, oh, my gosh.

I used to ask questions.

I.

And I, and I work in the medical profession.

My day job, I am a sales rep for an orthopedic company here in the US and we.

I work in the operating room most of the time.

And so being in the medical profession, you.

I already knew certain things and I knew, like, what to ask in a way, but I was still completely lost.

So there is a need for moms to learn.

There is a need for A, a road map to follow when you have these complex kids or you know, whatever you want to call them.

But if you don't have that roadmap, you're going everywhere and you can't find.

It just takes too long to get to where you need to get.

So tell people about what it is that you set up and how you are supporting people and I guess sort of moving on from that.

Sort of what that sort of looks like practically for those people involved.

Sure.

So I came up, I, I sat down and this was about four months ago, I decided that I wanted to do this.

So I started doing it and I sat down and I was like, okay, what did I do?

What were the steps that I took to get to where I am today?

And I decided that the first thing that I had to do was find a team that would be a medical team around my son.

So I was able to find speech therapists, occupational therapist, a good developmental pediatrician, someone a therapist who deals with adhd, a behavioral person.

So you have to come like, you have to find that team that is going to communicate with each other and help your child.

Okay, so I, that was the T.

I actually have a, it's called Thrive, the Thrive method.

So that's the T, that's the teamwork and then the age are the helping systems.

So the health systems that you have around you.

So the school district, you have to know how to deal with the school districts, you have to learn how to deal with the state funded programs.

Here in the US it's all state funded programs and how to get the best benefit from that.

The worst of them all our insurance companies.

The insurance companies, you have to learn how to speak their language because if not, they're going to not deny everything that you need for your child.

That's what they sit there, they, that's what they want to do is deny, deny, deny.

So you have to learn that.

So that is the age and the thrive.

The R are your relationships.

Right?

You have to have your relationships like your family, your, your like building a village around you.

When you have a complex child, let me tell you, your family falls apart sometimes because it's not an everyday you do the same things.

You're dealing with meltdowns, you're dealing with therapies here and there and caring, taking your, your son, in my case my son to physical therapy, to speech therapy, to you know, psychologists.

And so my other daughter, my 7 year old daughter now up until she was about 4, 3 or 4, she went with him to every single Therapy appointment because she had to go.

I.

I couldn't leave her behind.

So, you know, that affects the family.

So you have to have that you have to have build a.

Support, a family support around your child and around yourself.

And that leads to the I, which is the integration and that is taking care of yourself.

You have to take care as, as a mother or as a father who's dealing with these type of events and these types, types of things.

You have to take care of yourself.

You have to take time, you have to do things, nice things for yourself.

If you're not well, your child is not going to be well.

So you have to do that.

And then the V is validation.

So it's.

You have to celebrate every moment.

Celebration is what is going to make you happy and it's what's going to take you through the bad times and the good times.

So remember to celebrate every single little step that you're.

Anything that your child does celebrate.

And then the last part of this and this goes, is just expect the miracle to happen because it will come together.

You will find yourself.

Things will come together.

It's going to be hard, it's not easy, but just expect that these things are going to come together and you're going to figure it out.

If you follow these steps, you'll figure it out.

So that makes a lot of sense.

And I think being able to sort of understand each of those elements and I'm even myself, you know, you can start to see how that fits into anybody's life in terms of all of the things which are important, especially like say when you've got multiple children and you've got different things that you have to attend to and, and one child, if they do have these needs, then of course the focus becomes there and a lot of the energy goes there.

And understanding how that fits in with the other child, but also with yourself, like say, in terms of looking after yourself and all those things, it sort of, I think compartmentalizing all those things is really, really supportive.

And, and so how do you then do that for the people that are sort of, you're, you're helping?

Is it, is it a Facebook group?

Is it a community?

Is it a meeting in person?

How does that sort of support then work?

So I, the way I started this and the easiest way I found was through a Facebook group.

So I started Thrive.

And you can look it up.

It's Thrive Knit for parenting parents with neurodivergent kids.

And in there I do trainings and we talk about all kinds of Things that relates to complex kids.

And then if you, and then we have a membership site where you have all of my webinars and you also have access to me to ask questions, to go over anything that we need to.

I will help you through how to put together an email for an insurance company and how are you going to get the school district to approve extra speech therapy sessions for your child?

So we talk a lot about that.

But the main thing is that thrive, that community, because you have to have a community of moms.

That's one thing that I found is that as a mom of a complex kid, the moms who do not have complex children, they don't understand a lot of times.

And so you have to have that community of people who understand what you're going through so you can feel good that it's not just you and that you're not alone.

So I try to bring the moms together through that group and we have conversations and we do once a month meetings that we talk about all things bring it on, you know, for 90 minutes, it's your time.

Let's talk to each other.

Let's, let's build upon those things.

So that's how I've been helping them is through this Facebook group.

And then they can sign up with me if they want some more one on one if they want to learn exactly how to go through the thrive.

And we have a lot of resources also with samples of letters and emails that you can send to insurance companies or whatever.

And I think, yeah, I mean I think for me a lot of it's that sense of you probably feel like you're burdening everyone around you, like say when you want to offload or you want to ask those questions or whatever it happens to be.

But to be in a group of people that understand the circumstances but don't have that personal relationship that you can't recreate that in any other way.

So I can understand why it's so powerful.

Yeah, it's.

It was one of the hardest things was trying to conform my life and what I had in my house to people who didn't have that.

It was, there's, there's, you just, it doesn't work.

So we ended up like our closest friends are moms and dads who have those types of kids too.

Because you know, why you get together, there's a meltdown.

You're going to get up, you're going to go deal with it and then you're going to come back and it's okay, you know, it's a meltdown.

It happens.

Let's continue the conversation and the glass of wine or the cup of coffee or whatever it is that you're enjoying at that moment.

But we understand each other.

We know where we are, we know who we are, and we know what's happening to our kids too.

We understand those things.

So, yeah, so, I mean, such a big and integral part of, like, say, you're the.

The dynamics and the identity and like, you say, just the way your life works.

And so it can be, I can understand, you know, like attracts like, isn't it, in that sort of scenario?

So I can see why it's such a.

Why that would be the case.

And.

And I think as well, just, Just sort of hearing how you've gone about it and sort of your demeanor with it as well, is the fact that, you know, it's not as if your struggles are over.

It's not as if there isn't.

There's still a world that you're having to navigate.

But I.

I mean, is it that you're.

Because you're able to support other people as well, that there's something within that that's given you a gift that probably you wouldn't have thought would have been the case, you know, even sort of a year or two ago.

I never thought that this was what I was going to do.

I still have a day job.

I still do what I do.

I'm still in the operating room.

But, you know, it has been the most fulfilling part of my life in the past.

I can't even tell you how long I've been doing my job for 17 years.

And I've been telling people it's been so fun.

I'm participating in podcasts, I am doing, you know, I'm helping these moms.

And it feels so good to be doing that.

And I feel like when you get in a community like that, even if you only know one little thing, that you can help one other mom out there that's dealing with this, it.

It brings that joy that you can't really even explain to people.

But yes, I just helped that moment, even if it was just that little tiny thing that I said.

And I guess that's the thing about a collective, isn't it?

It's like everyone's experience is slightly different, even if the circumstance seems like it's the same.

And those sort of pearls of wisdom or those experiences that you can share, you know, it's like a gold mine there, because what you can do is you can just think, I would have never come across that or, or got to that same situation or that solution of that particular moment.

But because you've heard, you know, 10 people or 20 people or however many people share those, you start to go, oh, yes.

And actually.

But then I.

My experience was this and I was able to do that.

And even if you don't think it's a big deal for someone else who hasn't come across it or have not made that work, then of course, like I say, it can, it can change that moment, which we know.

Especially if you have people with complex needs that can change your.

The next five minutes or half an hour or the rest of your day.

And that has a big sort of ripple effect.

Yeah.

One thing that I always say to the moms, especially when they're starting out, is you are not alone.

You are not alone.

We're here.

And that support you because that's how you feel.

You feel alone.

And.

But you're not alone.

And in terms of the people that you're able to support sort of, sort of through the group, does it have to be sort of California related?

Does it have to be us related or is it just literally child related?

And the fact that you need support in some way no matter where you may be in the world.

So we, we do support all from all over.

We really do.

The one thing that I feel like it would be a little bit different would be the support systems.

Right.

So the insurance companies, the, the school districts, I think that they work differently in other, in other countries.

And also like the funded programs, like the state funded programs or the country funded programs, I don't know what those are, but that, that is one part of the whole picture.

And so in California, I have resources in Southern California and in some other places.

So for the people who live around here, I can probably help a little bit more.

But I am still trying to learn more about other states and other places, so I can also help them.

And.

But for, you know, I don't feel like it's just for moms in California.

This is something that you even said that Mark just a little bit ago.

You can see how this would work for anybody, right?

Like this program.

And so it's.

I think it's.

I'm trying to reach these mamas that are just struggling and they don't know where to go.

And it doesn't matter where you are in the world.

We're here.

We're here.

And I guess that, you know, just that idea that sometimes you just need a hug.

And even if it happens to be a virtual one across the world, you know, that can be the biggest thing.

And then, then like I say, even if the, the nuts and bolts of some of those things that you mentioned might be different, the fact you've got a cheerleader or you've got someone who can just go now, just make another phone call, or just try, try this or try that, or I know somebody who's been in that particular situation in like, say, that state or that country or whatever it happens to be.

There's more chance of it being supportive, being in it than not being in it, I think is the things.

And whether, like, say it's that emotional support or even any of the other stuff, it's got to be.

It's got to be a real sort of positive experience.

For sure.

For sure.

And that's what we try to do.

Right.

It's a community.

It's a community.

And I would love to mention something.

So, Mark, I'm actually from Brazil.

I grew up in Brazil and my.

I speak Portuguese, so there's actually some women that are in there from Brazil.

And so we.

It's kind of fun because I speak Portuguese to them, even though they all kind of pick up on the English too.

So, you know, it is different.

It's a little different.

But guess what?

We're dealing with the same things and we still need this same information and the same community, the same village, if you can call that.

Yeah.

And that's.

I guess that's humanity at the end of the day, isn't it?

No matter what you.

What, what, what.

What the circumstances are might be slightly different, but the actual.

The human need is.

Is.

Is going to be universal, which is.

Is so incredibly important.

I mean, you're sort of dealing with schools and, you know, in this particular situation.

But is there an experience that you had at school or a teacher or someone that sort of had an impact on your life?

And did it.

Has it sort of helped you in what you're trying to do in terms of whether that was a, you know, a conversation or an environment or an experience that you just think, oh, yeah, I can remember that being a positive one that you're able then to help you sort of navigate where you are now.

I'm going to tell you about this woman, and she made a big, big difference in our lives.

So Drake was very little.

She.

So Drake was three years old and he entered preschool with the school district here in the United States.

When you turn three years old, you go into the school district and they start pre K And so they are in.

Drake was in a special education class, and we.

He made some friends in the classroom that we are still friends with to this day.

He's 10 now, but we've stayed together.

And one of the moms there, she was an educational psychologist, and she was working in the special education area, not in our school district, but in other school districts.

And to this day, I look at her, we go, they.

They play soccer together.

My.

My son and her son, they're in the same soccer team.

And I look at her and I have so much gratitude because she really taught me so much about how to go and how to work with the educational system.

She is now the director for our special education services for my school district.

And so it's great to see that she's moved up in the world.

And she is just amazing, an amazing person.

And I feel like if it wasn't for her in the hours out.

I'm not.

I'm not kidding you.

It's hours that she spent with me on the phone looking over his information.

What do we need to do?

How do we get this.

How do we get Drake to this school?

Because this school is better for him.

She literally spent so much time with us, and now she has the opportunity to help so many people in my school district.

And she does such an amazing job.

So I love her.

And she has really done something for us that if it wasn't for her, like, we.

We wouldn't have had access to it.

I love that.

And I also love the sort of the paying it forward idea as well, because, I mean, that's as.

Without any details, you know, that's essentially what you're doing for those people that you're helping as well.

There'll be someone in the group going, but without you, there was no way of doing that.

And I just love the way those things sort of go full circle.

Yes.

Is there a piece of advice you've been given?

Also a piece of advice you might give your younger self now?

And I guess this may work beautifully in terms of the advice that you're able to support other mums with in terms of how to help and something you'd like to share from that point.

The one advice I would give to a mom right now is don't forget yourself.

It is so easy to just give everything to these children.

You give your.

You give everything to them because you love them so much and you want them to do well.

But if you forget about yourself, if you're not well, they're not going to be well, so I.

I went down that rabbit hole.

I.

I was not well, and.

And I wasn't well for a long time, but it's because I forgot about myself.

And I put everything that I had, every moment and every thought into helping him, and I forgot about myself.

So that is the one thing that I would have gone back and I would have told myself about probably eight years ago.

Don't forget about yourself.

Yeah, I.

I think that sort of literally is sort of running.

Running dry because of that.

There's only so far you can go, isn't there?

Even though you're doing it from the best place and you're trying to do everything you possibly can, if you're not replenishing what you need and giving what.

What you need in order to kind of be your best version.

And I think.

I think it goes from the fact that you obviously physically and emotionally need to be there for people, but I think also there's something almost unsaid that people relate to because of who you are when you're looking after yourself.

And it's such an important thing.

And like I say, so many people need.

Need remember reminding of that on a regular basis.

So I think, yeah, it's definitely great advice.

Yes.

Yes.

Is there a resource you'd like to share?

And this can be personal, professional, but anything from a song, a video, book, podcast, film, but something that's had an impact or something you think would be good for people to hear.

I.

There is a video of my son, and I remember this very, very well.

And I love this video because it was the first time he ever said his very first word that was not that he wanted it.

And his first word was not mom.

It was not dad.

It was more.

So we have him on the.

My.

My husband is throwing him on the bed and on top of a bunch of pillows.

And he was just having the best time, right?

He was about three, three and a half almost.

And he would just laugh, and it was like the cutest thing.

And so we were using a lot of sign language with him.

And so we would go more, more, more.

And at one point, after about 10 times, at least, we would look at him and he would.

More.

And so we just kept throwing him on the.

On the bed.

And that was.

That's one of my most favorite moments.

You celebrate those moments.

And so.

And even if it is you're the dad throwing a kid on top of the bed with a bunch of pillows, you know, it is celebration time.

And seeing that, I feel like some of the moms can relate to what we were going through at that moment.

Yeah, yeah, it's a.

It's a lovely image.

And like, say it can come at any point and.

But to.

To be able to witness it and like saying to be lucky enough to actually have it captured as well, like I say, because that must literally be sort of a pinpoint moment in time, but also for everything that's come since then in a positive manner.

So, yeah, I absolutely love that.

So the acronym FIRE is important for us, obviously, here at Education on Fire.

And by that we mean feedback, inspiration, resilience, and empowerment.

What is it that strikes you of any one of those words or anything that sort of.

Sort of hits you from seeing that resilience?

Because you have to be resilient with these kids.

And I think empowerment, too.

You have to empower yourself to be that advocate for your kids.

So, I mean, I love that acronym, the fire.

I love it, everything about it, because you have to have feedback.

You have to be inspired to do it, even when you're not wanting to do it.

And you have to be resilient to deal with those complex kids.

And really, my whole entire Thrive program is to empower these moms to become their kids, their sons, their daughters.

Best advocate.

So I love the word empowerment.

Fantastic.

And just one final thing I was curious that I sort of saw on everything that you're doing was that idea from of confusion to clarity.

Can you just sort of talk to me about that a little bit?

Because I thought that really struck me as something which it seems obvious when you read it or when you come across it, but I'm sure that's the confusing thing when you're in the midst of everything.

So the reason why I use that is because I remember being in this cloud of not knowing what I was doing.

And, you know, when you.

When you have kids, you have certain expectations, right?

Like when you're pregnant and you have the baby and you know you have to.

You want them to become something.

You kind of have that picture of a child growing up, going to soccer games, doing, you know, basketball games, and be becoming a doctor or whatever, whatever it is that you have that in your mind as a parent.

And when things start not going that way, you.

You get.

It's this cloud around you, what is happening, what is going on.

And what I help people see is that there is a light at the end of the tunnel.

And there is a way for you to feel empowered enough and to find.

Because when you.

When you know what you need to do, you find that clarity to know that you're doing the right thing at the right time.

And you might need to change a little bit of those expectations.

And the expectations are going to have to change.

I think it changes even for the typical kids, but with the complex kids, it's.

It's changing those type of expectations and having that clarity that it's going to be okay.

I love that.

What a great place to.

To finish off.

I think the idea of education immediately for so many people is just school and the world that the majority of us know was the case.

But learning and education and the, the world that you've expressed and you've been able to explain to us here, I think is a really important one and a really supportive one for everything, everything that you've done.

So, Michelle, thank you so much indeed.

Just remind everyone again of where they need to go to find out more and to get involved if it's something which is going to be helpful for them.

Sure.

You can go to my website, which is wisdom number four, Complex Kids.

And you can also go to Thrive for Parenting with neurodivergent Kids.

It's on Facebook.

Find me.

And you just have to answer a few questions and then I'll let you into my, my private group and it will be awesome to have you there.

I look forward to having more parents join the community and help us be better parents for our complex kids.

Fantastic.

Michelle, thank you so much.

Indeed.

I really appreciate it.

Thank you, Mark.

Education is not the filling of a pail, but the lighting of a fire.