034- Living with an Invisible Disability with Michelle Steiner

Anouk:
Welcome to the podcast. We have another installment of our more personal and family stories. Today, we are welcoming an adult that was a child with, what we can call an invisible disability, which a lot of our of our emotionally intense kids might have. And she shares her story as a child, how it was in school, and what she loved that her parents did for her, and what she suggest to other parents too. So we're receiving Michelle Steiner. She lives with an invisible disability. She has dyscalculia, a math learning disability, limited endexterity, and visual perception issues. So more than 1 invisible disability.

Anouk:
It it has made things such as not and driving impossible. She was diagnosed a young child in kindergarten, and living with 1 has become a way of life and has had to learn different way to learn and live. She has article published in many, online blog and magazine, and photos of hers are also features in Word Gathering Anouk independent and org ready. She works as a paraeducator in a school with student with disability in Pennsylvania, where she lives with her husband and 2 cats. So let's welcome Michelle over on the podcast. Welcome to Parenting the Intensity, where we'll talk all about how we can drop the general parenting advice that doesn't work with our emotionally intense kids anyway and let go of the unrealistic expectations society puts on us as parents. Together, we'll find solution and ideas that work for you and your kids. Chances are, deep down, you know what they need.

Anouk:
But you need a little encouragement to keep going on other days and permission to do things differently and help you fully trust that you already are a wonderful parent to your exceptional but challenging kid. Do you read all the things, listen to all the things, take all the courses? And you know all of things about parenting, but you struggle to actually apply them in your real life, then you're in luck. I just started the Parenting the Intensity community, which is a, monthly group support for parents of emotionally intense kids. And the goal is exactly that, to take all the information you learn from the podcast and from all the other sources and adapt them so that it work for your child and your family, your reality. Because things can work, but not always the same way for everybody. So the same thing might need to be adapted to work for you. And sometimes it's hard to sort through everything to choose the right things that so that you can really enjoy your life and your kids, not always being afraid of the next outburst. You can join by clicking on the link, in the show notes or on the website.

Anouk:
Hi, Michelle. Welcome to the podcast. Glad to have you today.

Michelle Steiner:
Oh, well, thank you so much for having me. I certainly appreciate that.

Anouk:
So, I've introduced you a little bit in the intro, but, I would like for you to share a bit more of why you do what you do with, the listeners.

Michelle Steiner:
The reason I love to work as a paraeducator and a disability writer is because of my own experience with having a learning disability. And a lot of times, I feel that I get that chance to go into the classroom or even with writing an article, and I get that time to be able to connect with other people that have disabilities and to be able to share my experience and to also listen to the experiences of other people and just have that connection.

Anouk:
Yeah. And I think that's very important to be able, as a child or as a parent, to be able to relate to other people that live something similar, because lots of people don't necessarily get it. And since we address disability, and it's not necessarily something, everyone that listening is, like, knowledgeable, like, know really what that means, I would love and and also because it's not not everybody has the same definition of what the disability is. I would love to know what what's yours. What how do you define a disability?

Michelle Steiner:
I have a learning disability. I have dyscalculia, which is a math learning disability. And I also have limited hand dexterity in both of my hands and visual perception. And for me, having a disability means that I struggle with a lot of math. I have a difficulty with understanding how numbers work despite many repeated, interventions. And I also my hands, it can be difficult for me to unlock doors and things can fall out of my hands very easily and I have terrible handwriting And also my visual perception is affected. So and it's in my brain, not in my eyes, so I'm not able to drive and I confused my right from my left. But everybody that that has a disability is going to have a different experience even if they do have a learning disability or if they have limited hand dexterity.

Michelle Steiner:
Everybody has a different experience, and Mhmm. Different people have different ways that they view them. And I once didn't view it in a very positive way. I can remember thinking, oh, if I just didn't have this disability, my life would be perfect. Mhmm. But little did I know that having this was going to not only be something that was going to be a gift for myself, but also for a lot of other people.

Anouk:
Yeah. Yeah. So, like, I love that. The the it's a journey, I think, from learning that you have a disability to accepting it as what it is and then turning it in a strength in some in some way. And that doesn't mean it's not there anymore because Mhmm. Those disabilities just don't disappear. But lots of the time, it's how we see them, and how we adapt, and how we can get accommodations so they don't limit us as much, because they can be more or less limited, depending on the context we're in.

Michelle Steiner:
Exactly. Yeah. As long as I, I find it more empowering to think of the things that I do the things that I can do rather than to dwell on what I can't do.

Anouk:
Yeah. True. Definitely. And so I would love to know, like, you you share with me that you learn really young, that you had a disability. And I just wanna address because lots of people listening don't necessarily have one for their children. But it's not just disability. I think every child who's struggling in some way, even if we don't know what's happening, there's something happening. And not knowing what's happening, it can be very hard for the parents and for the child, because the child is aware that they're different.

Anouk:
And learning that we have like, there's an explanation for why we're different sometimes can be like, it it can be mixed feelings, but it can also be validating and, re get some guilt out of like, elevate some of the guilt, for the parents anyway. So I love to to know what was your experience as a child learning about, the fact that you had a disability or more than 1.

Michelle Steiner:
Right. Exactly. I was diagnosed with having a learning disability when I was in kindergarten, and that was an umbrella term at that time. They didn't have a specific diagnosis of dyscalculia or the limited hand dexterity. I didn't find that out until I was an adult. We knew that I struggle with visual perception, along with the with the disability. And I can remember my parents were always very open and very honest about my disability. They explained to me that I had a learning disability and I learned differently and that I was smart and they really assured me of that.

Michelle Steiner:
And they didn't give up on me. And from the time I was a really young child, they advocated for me. And when I got to hear what my disability was, it took some time, but I needed to know what what that information was. It gave me the information with that.

Anouk:
Sorry. My daughter just woke up. Oh. So we got interested by my youngest. But you were saying that your parents were very open and supportive of the disability, from the get go, basically.

Michelle Steiner:
Yes. They were. They explained to me in age appropriate, simple terms that I had a learning disability and that I learned differently. And when I heard that information, that it was a process. But hearing it helped because a lot of my peers were telling me I wasn't smart. My parents really assured me that I was and I learned differently.

Anouk:
Mhmm.

Michelle Steiner:
And having that validation and having that advocacy really helped me a lot.

Anouk:
Yeah. It's the first step of advocacy, basically. It's just recognizing that it's not and even if, like, it's a a developmental delay, for example, which affect, intelligence. Like, it's just being different. It's not Exactly. Bad. And and but it's so easy to think that we're we're bad or that we're not, like, we should be, basically. Because that, like, we're expected to be, and we I think kids that are a bit different will almost always, and if it's not always, get bad comments and negative comments.

Anouk:
So it's very nice that your parents were, that accepting and positive from the start, because it can leave some, some scars when it's not the case.

Michelle Steiner:
Definitely. Yes.

Anouk:
And would you say that, other than your parents, did you get other other support around you or there was other more negative comments and like Yes.

Michelle Steiner:
I did have support from our teaching staff. Most of the my teachers were very understanding and caring. Shortly after my diagnosis, I began kindergarten. I had to repeat that in a new school and I also had specialty instruction as

Anouk:
well. Okay.

Michelle Steiner:
And I would we would have classes where I would learn how to read. We attempted to learn how to do math, worked on tying my shoes, worked on handwriting. Was I my handwriting is still not that wonderful. And, I also went to kindergarten in the afternoon, with my my peers in that class. And I can remember I was really frustrated in the beginning though. It was I just wanted to learn like everybody else and just be like everybody else.

Anouk:
Yeah.

Michelle Steiner:
Yeah. And somehow, the a lot of those specialty instruction and the supports were helping me, and I was able to be in more regular ed classes. And I still had the supports. I have my tests read aloud to me, and I also had extended time on tests as well. Mhmm.

Anouk:
Mhmm. And I'm guessing that was not as common as it is today, but you didn't get, like, a computer for writing

Michelle Steiner:
English. In fact, I was just thinking today of all of our students, they have Chromebooks

Anouk:
and Yeah. I was just students that struggle with in writing today. We would not push that far. We would give a computer probably.

Michelle Steiner:
Now when I did learn how to type, I think I was in 10th grade, it took me a full year to learn how to type, not just 1 semester. But once I did, that opened up my world because people could read what I was saying. And now we teach it at a younger age and I think that's wonderful and I get to encourage, the 6th graders that I work with that, okay, typing is really important and it's okay. I mean, it's hard at first, but you'll you'll you'll get there.

Anouk:
Yeah. Yeah. That's a measure that we didn't have, like, a few years back because the computers were not as accessible as they are. Like, I remember when I was in school, there was 1 very old computer in the classroom. Like, that's it. There was no, like, laptop for every child that was struggling. That was not that thing.

Michelle Steiner:
Right. No. It wasn't. And now we've come so far with giving our students those tools.

Anouk:
Mhmm. Mhmm.

Michelle Steiner:
And and when you talk about handwriting, I had a lot of people that would tell me, that they I had teachers who didn't understand. I had one that put a w on my report card indicating weakness in 2nd grade knowing I had a disability. And I can also remember I had a learning support teacher that, she couldn't understand why my handwriting was so bad. And I I had a peer in the class and he said he knew I wanted to be a writer. And he goes, well, if you're going to be a writer, you have to learn how to write neatly. And I've never had an editor that has requested a handwritten manuscript. Thank goodness.

Anouk:
No. And I would say, like, lots of really known author had a really bad penmanship, so I don't think that's a requirement at all. But, of course, child children can definitely say any sort of things. It's just it's coming from a children is just that's a at some point, it's cute. It's. It can it can hurt for sure, but it's kinda cute. Coming from a teacher, it's not like it. Yeah.

Anouk:
That that's that's like and, like, I of course, they learn more now, I would say, now that they used to, but still, that's something that some teachers still not know a lot about. And I know it's not a lot in their, like, their training most of the time. So it's hard for them sometimes to understand. And when you don't don't really understand a disability, it's really hard to Mhmm. See all the impact that it can have. So Definitely. And it it's interesting that you're saying those like, it's those little things like that that they stay with with you as a child. Like, it it it marks in some ways.

Anouk:
Like, it's it's kinda sad, but that's some at the same time, it's great because you've come so far now. But, I think it's important to remember and to take, like, it the and to try not to say those things. And, of course, we don't control what's happening at school most of the time, but at home, like and it's sometimes it's very hard when a child is, like, just crying and, like, having a meltdown, but Mhmm. Struggling with math, struggling with in writing, it can definitely trigger really big emotion because you want and you know and you know what you should be able to do, but you cannot do it. It's so frustrating. And that can be very triggering for lots of kids, and they can have really big emotion type to that.

Michelle Steiner:
Oh, yeah. Definitely. I mean, it's loving and supporting my parents where we had a lot of cheer from homework sessions, especially whenever I was very young and I was struggling. School was hard for me when I was younger. I think it was, I didn't understand how my learning disability worked and what was going to work for me with learning. But my parents, they still, didn't give up on me. We worked and they also had me go to school even if they knew I was we studied for a test and they knew I wasn't gonna do very well.

Anouk:
Mhmm. I

Michelle Steiner:
still had to go to school and I had to try my best. And I think that's that's when I started to build a lot of the resilience for that. And then I started, then it got a lot easier for me once I figured out, what what worked best for me.

Anouk:
Mhmm. Yeah. Because it's the thing to know what the disability is, but it's another one to learn the solution and the the things that and it's not because you have a diagnosis of something that suddenly everything is very clear and easy. Like, for some people, some tips will and tricks will work, but won't work for the someone else that has the same disability. So

Michelle Steiner:
Exactly. Yeah.

Anouk:
I think that's really important. And so you you you were, like, globally, seems that you were well supported by your parents spend, in general, by the school Yes. With some exception. Would you say that, there was things that you wish you had as support? Maybe something that you see now in class that kids can get that didn't existed or anything else that you wish you what you're doing now that you wish were you at or something else that you

Michelle Steiner:
Right. I think one of the things I really wish is having that disability representation because I one of the students in my class, my learning support class, they struggle more with reading, and I didn't know anybody that had struggle with math the way that I did. So I kind of felt isolated even with them.

Anouk:
Mhmm.

Michelle Steiner:
And I was bullied with them as well along with my regular ed peers. And I also think it's important I also wish I had a mentoring program where I could be with college students that have learning disabilities to understand that. Because I can remember when I wanted to go to college, I had a learning support teacher that said, you can't, with your learning disability, you can't go. Why don't you go to a vocational training school?

Anouk:
Mhmm.

Michelle Steiner:
And I really wish they would have offered an early childhood program or something with education, and then I probably would have went to that, but they didn't. They don't offer that. But then I had the 1 supportive teacher that told me that I could do college. She was a student teacher and she said that I knew how to study and that I could do that and that there was people at college that had learning disabilities at her school and I was just amazed. And I just wish I would have had that chance to talk with a lot of people that had them before I went off to college myself.

Anouk:
Yeah. Yeah. Like, you know, it's it's possible even if you you have some, limitation in some aspects to know that it's possible to do anything you want, basically. It's just to adapt what you're gonna do and how you're gonna do it. But yeah. That's true. And it it's also talk to, like, how important some people are in our in our life too. Like, some people will have a very big impact, in the way that yeah.

Anouk:
Like, she kind of gave you permission, basically, to go to college.

Michelle Steiner:
Yes. She did. She gave me that permission. And luckily, I was able to connect with some other agencies, in the United States to help to do some funding. And so when it got really difficult, sometimes that's the voice that I heard when I was at school and it was really hard. Or I had a psychiatrist that told me I couldn't do college beyond universe beyond community college and

Anouk:
Mhmm.

Michelle Steiner:
Just sometimes that was the voice I heard, and that just helped me to get through that and to be able to go to university and graduate and.

Anouk:
Yeah. Yeah. And, like, I think, also, now it's getting easier too because there's more and more accommodation for people with disabilities. But it was not like, just a few years back was not as common as it's becoming slowly,

Michelle Steiner:
I guess.

Anouk:
It's still a long road, but, it's it it's still useful. So you would say, like, what is and and would you say general or your specific disability? Like, meeting people that add something specific, like, related to what you add would be most helpful.

Michelle Steiner:
Yes. I have met a lot of, people, basically, online with having, my type of disability. And I think that's really comforting when you get that chance to connect with somebody else that struggles with that because you don't feel like you're the only one that has that.

Anouk:
Mhmm.

Michelle Steiner:
And I also get that chance too with my writing. I've had a lot of people that have contacted me and said, that's that's my story or that's what I struggle with, and I thought I was the only one who who had that. And I think it's just being able to connect with other people just is amazing.

Anouk:
Yeah. Yeah. Really. And I yeah. And I think that's the the power of the web right now is to be able to connect, like, especially if you have a disability that is less known and less visible. And being able to meet with other people with the same experience is much easier now than it was without Intense. Because

Michelle Steiner:
Definitely.

Anouk:
We can meet people from everywhere around. So that's that's helpful. And it's true that, like, dyslexia is much more common than disc dyscalculia. So you have more people with that trouble words than there is with trouble with math. And I also think it's less diagnosed. Like, the diagnosis of this CALCULBIA is even less. Like, it's not necessarily that there is less people with it. It's less diagnosed, I think.

Michelle Steiner:
Oh, definitely. I mean, because there's a stigma that a lot of people have with learning disabilities. A lot of people think when they hear that term

Anouk:
Mhmm.

Michelle Steiner:
First of all, I think that what somebody that somebody can't learn, and that's definitely not true. People with them can't. They just need a different way to do it.

Anouk:
Yeah. And a

Michelle Steiner:
lot of people are so familiar with dyslexia that everybody thinks you must have a reading disability. And my only struggle with reading sometimes is, reading comprehension. And it's very and a little bit of grammar, but it's so slight that you have to know what you're looking for. But a

Anouk:
lot

Michelle Steiner:
of people have assumed I I can't read. Or people, when I hear they I have a math learning disability, they think, well, do you, oh, you must, look at numbers backwards.

Anouk:
Yeah. Yeah. That's the classic, like, 56 or 69 5 or yeah.

Michelle Steiner:
Yeah. And that's not the case. It's, just I'm not able to understand how numbers work. I can't read the face of a clock and left and right's confused, but that's not because I'm reversing things. It's just my brain cannot, for some reason, just does not understand how math works.

Anouk:
Yeah. I would say mine is a bit like that too. But Yeah. It's kinda complicated. Right. And very abstract. So, yeah, I think lots of people. And for some reason, I think in Northern Western culture, math is very important for some reason.

Anouk:
Not exactly sure why. And when like, it's worse to be bad in math than it is to be bad in language. Well, like so for some reason, like, it's very important and social status is tied with your capacity to do math to some extent, which I

Michelle Steiner:
I

Anouk:
which is weird. But

Michelle Steiner:
Exactly. I hear you on that a lot. Yeah. A lot of people just don't yep. That that there is that importance that they have with learning math and how numbers work, and it's yeah. I I hear you on that.

Anouk:
And would you say, like, does is it a problem in your everyday life now?

Michelle Steiner:
It can present itself to be a challenge, especially if I'm at my job and I the kids are finding out that I cannot help them with math.

Anouk:
Mhmm.

Michelle Steiner:
And sometimes that can be that reassuring voice though for a child that is struggling and and to be able to just get them the resources that they need. It can be hard with, everyday things like budgeting. I am not great at that. I it can also be really difficult if I'm at the store and I can't total items. And it's always a surprise when I go to the cash register. And I know that's a surprise now with everybody, but for me, it's really like, oh. And but what makes it easier is if I use cash because I can visualize if I have $20. I can visualize the the dollars and the

Anouk:
Mhmm.

Michelle Steiner:
Everything. But if you give me a credit card or you give me a debit card, I have it's more abstract for me. I just can't,

Anouk:
I don't

Michelle Steiner:
know how much I'm spending. So that's another thing. How much I'm supposed to tip when we go out at a restaurant. So I use my phone for that. I'm also whenever I I cannot read the face of an analog clock, I can see the numbers. I can see the little hand, the big hand, but it just does not make a whole lot of sense to me. So I use my Fitbit or Yeah. My phone or any other kind of digital

Anouk:
Honestly, I'm I'm wondering if kids these days are still learning how to read on a clock. Like, yeah.

Michelle Steiner:
Do it, but yes. But now it's also

Anouk:
need to.

Michelle Steiner:
The things that's most of our students,

Anouk:
Yeah. Like, why? Learn how

Michelle Steiner:
to yeah. They look on their Chromebook, or they have their watch. And

Anouk:
Yeah. That's like, why wouldn't they learn that? It's like those things that we can we still learn, but sometimes it's like, do we really need to still learn that? Like, is it useful anymore?

Michelle Steiner:
Right. We can learn it, but I think it's the emphasis on it is one of those things that I I think it's changing. Because I can remember whenever I was growing up, I would ask, oh, what time is it? What time is it? And somebody would point to a clock and say, well, there's a clock over there.

Anouk:
I'm thinking, yes.

Michelle Steiner:
I can see there's a clock there. I

Anouk:
cannot read it.

Michelle Steiner:
But I think now, it's just become a way where people can just be able to find other ways to do it. Mhmm.

Anouk:
So if

Michelle Steiner:
we give them the exposure, we say, yeah. It's there. If you can pick it up, great. If you can't, we have some other alternatives to help.

Anouk:
Yeah. Yeah. And is it really, like, that much of a problem anymore? I don't think so. Like, I mean, it It's not. It was the only way to know time in a classroom maybe, but those days, it's not all.

Michelle Steiner:
No. It's it's not. And I've had people when I would tell them this, they would say, well, can't you get tutoring for it? I'm like, we've tried. It hasn't worked. And some people were just, like, amazed at it. And it's like, well, it it it is what it is. So that's Yeah. Yeah.

Michelle Steiner:
But I agree. Yeah. It's really not a necessity for what people are, you know, doing now with our society.

Anouk:
Mhmm.

Michelle Steiner:
I also look back when people give that, oh, a lot of maybe people that are more old school with that. Yeah. I I always like to say, well, they used to use a sundial and back in that time, we don't

Anouk:
do that. Nobody nobody knows to read that anymore.

Michelle Steiner:
Yeah. Nobody knows to read that anymore. So I yeah. I think it's one of those things that just as cultures change and then we might take a different, perspective on somebody that that reads that. And if somebody can read them analog clock, that's wonderful, but what I think is, a lot of times people love to think, or at least feel that they look at certain things with having a disability as a character flaw. Mhmm. And it's

Anouk:
Like, how you were saying, like Yeah. Get get, like, get tutoring. Yeah. But no. That's not how it works. It's not because I don't didn't try. It's because my brain just cannot process it.

Michelle Steiner:
Yeah. Exactly. Yeah. I agree.

Anouk:
Yeah. No matter how many time

Michelle Steiner:
Yeah.

Anouk:
You try, it's it's not gonna, like, it's not gonna come. Like, it's it's doesn't work. It's not it it's like and I think that's one of the thing it's really hard with, invisible disabilities or diseases is that people cannot see it. Like, someone would be blind. People would not ask someone who's blind or as a, like, a visual impairment to to see something.

Michelle Steiner:
No. We would understand. We we definitely would. We would know why they couldn't do it and we would be willing to, accept that and Mhmm. Be open to what ways to help them.

Anouk:
Yeah. But it's basically the same thing. Like, they just cannot like, your brain cannot process this in the same way as someone who cannot see it. Exactly. That we are not as knowledgeable yet, I would say, with the way brain works. It's very complicated.

Michelle Steiner:
Yeah. Definitely. We're we're learning all kinds of new things and yeah.

Anouk:
Mhmm. Really. Yeah. It's it's very interesting to, to see how it presents and how it can impact and how you can adapt to it too. Like, like you said, with cash instead of credit card, example, which I think would be a it's the same for lots of people. I think most people know more what they're spending with cash anyway.

Michelle Steiner:
Yeah. Exactly. It's it's about finding ways that I'm able to adapt to to my life. Another way that having the disability does affect me is definitely with, the fine motor skills. I sometimes, I struggle with opening up locks or doors. That can be challenging. Sometimes, just I've learned how to adapt to a lot of things. Recently, I was at the grocery store and I was putting my items on the cart and I had a woman that came up to me behind, behind me and she starts helping me unload the cart.

Michelle Steiner:
And I'm like, oh, well well, thank you. And she goes, yeah. I'd like to help people, and you look like you really needed it. And it was one of those situations where I definitely I've learned different ways on how to adapt to to my life, and it may look a little different maybe to somebody, but I I can do it. And I just smiled and said, well, god bless you. And

Anouk:
Yeah. And and sometimes it's a bit, uncomfortable situation like that. Like, especially when you know you can Emotionally do it by yourself. It's just that your way is different. Like, a child would we would all depend differently than the one that can definitely write correctly. Yeah. Like, we cannot we don't need to fix it if since it it works, basically. But yeah.

Anouk:
Sometimes when things are different, people think that you need the ALT, because you're doing things differently.

Michelle Steiner:
Right. Exactly. And another way that my visual perception affects me is my eye hand coordination and my reaction time. When I was in school, it was really gym class was a nightmare. Every time a ball would come, I would flinch and I was very uncoordinated. And playing team sports can be really difficult for me. I liked I like doing non competitive exercise, like, because I I do like to be fit and to be active with that. And I'm also not able to drive because of that.

Michelle Steiner:
I have, you know, good vision, but it's very hard for me to be able to have that reaction and to be able to control everything.

Anouk:
And that's kind of a essential when you drive, of course.

Michelle Steiner:
Yeah. Exactly.

Anouk:
That's a yeah. And in our society, like, in most places, not driving can definitely be a struggle because it's something like, it's limiting because lots of CDs are not made for people who cannot drive a car.

Michelle Steiner:
Exactly. And a lot you know, in our country, it is that we have a very limited transportation system, so it is hard to get around. And some of the alternatives that they have can be very difficult with people with disabilities, with some of the their, paratransit services.

Anouk:
Yeah. And would do does those for like, work well? Because I I feel some like, there's plus. Like, for here, anyway, the way it works is great because it takes you from door to door, which common transport doesn't. But

Michelle Steiner:
Mhmm.

Anouk:
You might be waiting for it for an hour or sometimes.

Michelle Steiner:
Yep. Waiting for it for an hour or they can come about an hour early and I when I used to use that. And now I'm really lucky. I live in a central location where I can walk to where I need to go. My husband is wonderful for taking me to work, and I have a wonderful coworker that takes me home at the end of the day. And when those things don't work out, I'm able to walk home and

Anouk:
Mhmm.

Michelle Steiner:
I it works out a lot better for me using that.

Anouk:
Yeah. And I think that was the important part of, like, what we call, like, like, disability is a social construct because it's related to the environment. And when we are Intense environment that is not supportive to our disability, it becomes very disabling. But when the environment is supporting our disability, it can almost disappear. Like, you're saying you don't need a car anymore, or you have people driving you around in your daily routine. It's just normal, like, anybody else would carpool. Like, it's just a normal thing to do. And so then it does, like, waiting for adaptive transport for an hour is a disabling experience.

Anouk:
But having Exactly. Running with a coworker is just fun when you're talking, you're debriefing before today, the same when you're walking, you're having that space. So it's a much more positive experience. So, yeah, I, That's that's great that you like, the idea of adapting your reality to something that fits your needs, basically.

Michelle Steiner:
Right. Exactly. And there's also an added bonus to sitting in the passenger seat and walking. Sometimes a photography is another passion of mine. So I get to notice other details that other people miss because they're driving and I get to see a flower or I get to see something else that's really interesting. And if it's local or sometimes my husband will pull over, I get that chance to take a picture of a flower and people will say, you bring out details in the flower that other people miss. And I get to share that, on my blog and also on other places with social media. And I just I love doing that.

Michelle Steiner:
And that's something that I wouldn't have if I was behind the wheel of a car every day.

Anouk:
Yeah. True. And I I would say, like, I can attest because I I'll I am also a photographer, and I'm most of the time behind the wheel. And so so often, I'm like, shoot. I would love to take that photo, but I cannot. I'm driving.

Michelle Steiner:
Exactly.

Anouk:
So yeah. Definitely. So yeah. It's it's just the word is different. And I think that ties very well back to, the reality of any like, I'm I'm I'm often talking to parents about, like, finding what their children needs and ways to support what they need, and that works no matter what the reality is, be it disability or just any challenge. It's adapting things so that it fits their needs, and their reality, and then things suddenly are not as hard because the environment is supporting you in what you need, and it can be different. It can look like it's not something that is usual. But still as long as it works, that's what's important.

Anouk:
And what would you say, like it seems that in your life experience, you had a lot of occasion to practice advocating for yourself, and it was bottled to you by your parents and by some some other people around you. And would you say, like, you learn, like, in a formal way to advocate for yourself? It was just more by osmosis and so

Michelle Steiner:
Right. I would say that my parents did a lot of advocacy for me when I was younger, and I can remember having my mom was great for explaining my disability to other people and they were accepting, and I thought to myself, oh, I wish I could do that. And slowly, I had to be the 1, as I became an adult, to advocate for myself. And that is something that's so important, but I can look back to my parents modeled that for me. My mom would go to my individual education plan meeting and she would say, okay. I'm I'm headed to your IEP meeting. Do you is there anything that you want me to talk about? Because they didn't include students. Now we include students when they get older and she would bring the concerns and I got that chance to tell her.

Michelle Steiner:
But as an adult, I took that where I found where if I went and talked about having the disability and I advocated for myself and I explained things in positive terms

Anouk:
Mhmm.

Michelle Steiner:
Like like my parents did that I had a lot of success with people understanding what my needs were and having that, resolution and getting them mad and just a much more positive experience every time I use them.

Anouk:
Yeah. For sure. And would you say, like, in in learning those skills while growing up, did you, like, did you start advocating for yourself only as an adult? Like, do you think your parents did it for you, like, longer than they should? Or because I think it's something often happened. Like, when you have a child with some needs, you will you will continue to support them longer than what society thinks is okay, basically.

Michelle Steiner:
Right. My parents have always are still, I'm really blessed to have them. Sometimes I still do. I'll call them up and say, hey. I have a work concern or this and they're able to give me some pretty good advice on things and just to kinda run some ideas by them. Mhmm. But I would say that they really encouraged me to speak up for myself as I became a teenager or as a as a child. They really wanted me to be able to be the one that could speak up for what I needed and just went through a lot of how how we do that.

Michelle Steiner:
And I'm just I can't say enough nice things Godbout, them showing me how to do that.

Anouk:
Yeah. Yeah. Because, like and I think that's also normal. Like, parents with kids with special needs will will have to advocate for their children longer than what is, like, expected. Normally in high school, we expect kids to kids to be basically able to do everything on their own and not need their parents to, talk to the school for them. But if you have kids with any kind of special needs, that's not necessarily the case.

Michelle Steiner:
Yeah. Exactly.

Anouk:
They will still need some help. So before we, we end, I would wanna choose and see if there's anything else you would like to share that we didn't touched on.

Michelle Steiner:
I would definitely love to point people to my blog, Michelle's Machine, where I blog about disability related articles, and I have a little store where people can buy my artwork. And I also have a disability forum as well where people can, connect with each other.

Anouk:
Oh, that's great. So it's, like, people can find people with their the same disability. That's what you talked about a lot, like, being able to relate to other people.

Michelle Steiner:
Mhmm.

Anouk:
Yeah. And is there any resources that you would like to share also that was you useful for you and your Sure.

Michelle Steiner:
I think, there's definitely a lot with the nonverbal learning project. That's that's definitely one that helps and project eye to eye. They give a lot of mentoring for people with disabilities and I'm also involved with the group called AllAbilities Media that I also work for on the side, and we do a pod cafe where we teach podcasting and other interview skills. A lot of our people that are participating in that have intellectual disabilities or autism, but we definitely, try to be there and, have a supportive environment for people with disabilities.

Anouk:
Great. That those are very interesting resources. We'll link all of them with along with yours in the show notes. So thank you very much for being with, us today. Was very nice meeting you and learning more about your story.

Michelle Steiner:
Oh, well, thank you so much for having me. I certainly appreciate it.

Anouk:
I'm so glad you joined me today and took that time out of your intense life to focus on finding a new way to parent that works for you and your kids. To get the episodes at Soon as Day Drop, make sure to subscribe to the podcast. And please leave everything in review so other parents can find it too. Also, check out all the free resources on my website at family moments dot ca so you can take action on what's the most important for you right now. And take a deep breath. Keep going. We're all in this together.