Welcome to Growing Up with Dr. Sarah!
March 19, 2022

Allowing our Children to be Uniquely Themselves

For this episode, I have two very special guests with me today. The first is Joanne Weinman, who is a mom, and she's going to give me a mother's perspective, but my other special guest I'd like for him to introduce himself.

What's your name? My name is Kaiden, Weinman and Cayden. How old are you? I'm nine years old. What grade are you in right now? I'm in third grade. How do you like school? I like school because I do math and science is easy. It's easy. Yeah. A lot of people think those math and sciences halls. But now this year, I'm a be 10 years old.

You're going to be 10. Do you know what month your birthday is? May 26th, 2012. Oh my goodness. You're going to be in double digits. Okay. Like going from one digit nine to two digits, 10. Right. It's kind of interesting. Huh? Okay. Now tell me what else you like about school? Um, I like, um, I like. Science and math and social studies. And that's all my three parts. Now, what do you like to do when you're not in school? Playing in the snow. Oh yeah. And just relax. Have summer. You liked summer. I liked summer too. Yes. But I don't mind the snow either. That's pretty fun. Yes. I certainly do. That's good. That's good. What else do you like to do?

Do, do you like to play any. I play soccer next. Oh, good. And so you're going to get to play soccer. I think I remember, didn't you? And I have two teachers in my mind are Mrs. Alexander, Mrs. Newton. So you have two teachers in your class? Yes, I certainly do. Now, do you tell me about some friends you have in your class?

I have my best friend, his name's caisson shovel, and he is nine years old and he's in my class and he's in the third year. Okay. Good. Last year I was in second grade and my teacher was Mrs. Rice. Oh, wow. So it's the same school, correct? Yes, I do. Yeah. So you didn't have to go to a different school and you like your school?

Yup. So what is your favorite food? My favorite foods are pizza, hamburgers, fries, hot dogs, ice cream, and pizza. Wow. If you had to pick one... My favorite food is pizza.  That's on your Crocs right now, right? My Crocs are hamburgers, hot dogs, and pizzas. Oh my goodness.

I know that you love your sister very much, huh? Yes, I do. Good, good. Is it okay if I ask your mom some quick? Sure. Yeah. But if you have anything that you'd like to say while we're talking, you just let us know sounds good. All right. Okay. So Joanne, why don't you introduce yourself? Tell us a little bit about kind of the journey that you've been on.

And, I do want to say to those listening that, you know, She has been an amazing mom and I have had the opportunity to not only watch her grow as, um, as a parent but also just how well she is with both her. You know, and so I really, that's why I asked Joanne to come and talk today because I think she has a lot of information that can really help people because I also have had the opportunity to watch Kayden grow and Kaden you're doing such a good job.

Yup. Yeah, I think so. So when did you first start to notice? Maybe there was something going on. So I think at about 18 months, we noticed that Caden didn't seem to be really talking as much as other kids, his age. So at that point, we decided to go see a speech therapist and have him evaluated. But since he was only 18 months, the speech therapist thought like maybe he could be delayed or maybe he just hasn't had his burst.

So we did end up waiting, um, about a year and a half after that to move on to the next process of getting him evaluated. Because if I recall, Kayden's always been very smart. Oh yeah. Cadence and very smart. I think at two and a half, you know, he wasn't really. Saying a whole lot of words, but he already knew his entire alphabet and could point to all the letters and tell you what they were even not an order.

And I think most kids, these days learn that and you know, pre-K and kindergarten. So we just thought that was amazing for him. Right. Right. And so that makes it kinda hard to think. Okay. Well, he's so smart, you know, we're just, it was really just the language. Did you start to notice anything else? You know, it was, it was kind of hard for us at first, just because Caden, uh, was our firstborn and he was also the first cousin.

So we didn't really have a lot of children his age to model off of so quirky things that Kayden would do. We just thought he was being silly. Right. So we weren't, we didn't really know some of the things that his behaviors that he was doing were really signs of autism.

So then about, so around, you said two and a half, three, um, what happened then? So at about three, we decided to move on with the process and go to Cleveland clinic to get him evaluated, to see if he had autism. And at the time, you know, we're thinking like maybe he has autism. Maybe he doesn't. We had no idea.

So we took him there. And if any other parents have been through any sort of a special needs evaluation, it takes a really long time just to get the packet. It took about three months and then you fill out tons and tons of paperwork. And then you see doctors that evaluate, um, your child. And I remember one time we were at an evaluation where Kaiden was there with us and us through.

And he was so nervous, the only place that he felt comfortable was sitting underneath the chair and peeling the sticker that was under the chair because he really loves stickers at that time. And that's just what made him feel comfortable. Right. Right. And I mean, he wasn't hurting anybody. I hear a lot from others about it does take time and I'm sure that.

That's stressful though, too, because you probably like all of us, we all want answers right away. So that must've been a little bit hard going through that, but you persevered through that, right? Yeah. I mean, it's really hard at first and you're just waiting and waiting, waiting to find out. And, um, I know when we had found out about Kaiden's diagnosis, you know, we're thinking like maybe just mild or, um, you know, not at all.

And they came back and said that he had severe autism. How did you feel about that? That was hard. You know, like thinking, you know, we just thought maybe just mild and them coming back and saying severe, you know, you see other kids with special needs and you look at your own kid and you just, you just don't think that that's the case.

You know, the more that they explained everything to us, like things that, as I said earlier, things that we didn't think about, like him just being quirky, like, um, certain clothes that he would want to wear jumping up and down flapping his arms, like his specific routines, like him getting easily frustrated, things like that.

Like we had no idea that those were. Early signs. Right. And it is hard to, especially when they're toddlers, because like you said, is it something behavioral? Is he just super excited and that's why he does certain things or was it, was it actually a sign, and not everybody fits in?

A specific mold, would you agree? Yeah. Right. I mean, they call it a spectrum for a reason. Cause you know, every kid is going to be different and there's this huge spectrum of where you're going to fall on that. Yeah. I liked it, I try to explain to people like it's like an umbrella, you know? So if you think about an umbrella, you know, everybody kind of.

Where people fall underneath that umbrella is very different. And so the diagnosis itself doesn't have to define you, you know, it's, it's finding the strengths, you know, and knowing, you know, strengths and weaknesses, but not looking at it as a weakness, but looking at the strengths and then working with the things that can be improved.

So how long do you think it took? I'm just being real, you know, Before you, you know, just kind of got over the fact when somebody says, you know, your child has autism. I mean, I think it took a very long time. Yeah. You know, like Kaiden was diagnosed when he was three and he's nine now. And I think that you know, at first, it was, it was hard.

And, you just have so many different things going on and things going on. Going on in your mind, like, is he going to be able to do this when he's older? Is he going to be able to do that when he's older and you have no idea and there's, does he need to go to this school?

And I will say that early intervention is the best thing for any kid with autism or any kind of special needs. Like when Kaiden first got diagnosed, he was barely saying any words, and, We were lucky enough to have Kayden go to a preschool for kids just with autism. And I am so grateful for that school.

Like I do not think that Kaiden would be in the spot where he is right now. If we didn't have him at that school. So do you remember going to school at Monarch? Do you remember going there? Yeah. What do you think about it? I do. There was so much fun. There were tablets.

 So he went to school. How many years was he in that preschool program? He was there. I think it was, he started halfway through his first year. So I think he was there for two and a half years. So he started kindergarten a little bit later than most kids would. So he was. Just turned six that's when he went to kindergarten.

So before that, he was in, he was at Monarch in preschool now. Tell, tell us about kind of what you had to do to fight for him to get into that school. That wasn't easy, no, it wasn't. So I think if anybody knows me, they know that I'm kind of laid back, but now when it comes to my kids. So I think that what you need to do is be the biggest advocate for your child.

So when we first found out about Kayden's diagnosis, I had called, the local school district that we went to. And ask them if they had a preschool for kids with special needs. Because I was told that every school was supposed to have a preschool like that. And when I called the first time, they turned me away.

They said, no, we don't have anything like that. So, you know, you feel a little defeated and then you talk to more people and you say, they're like, no, they're definitely supposed to have. So, um, well, my husband and I ended up doing was, um, hiring a lawyer and the lawyer really helped us get through everything.

And we ended up having to go through mediation with the local school districts so that they would send Kaiden to the preschool that I was talking about. And, you know, it was a, it was a little bit of a hard process and it was long. You really just need to stick through it and make sure that you have a really good support system.

I couldn't have done that without, of course, my aunt. And then, um, my mom and my dad, like my mom was there for me so much everything like even just to give me a hug, like sometimes you just need that from your mom. Right. And, you know, it would be much easier to just say, okay, They don't have it for him, you know, but you knew that this was something that he needed and that he had, you know, the ability to be able to go to preschool.

And you're absolutely right. That, that there should be some kind of program, um, for, for kids, you know, an early intervention program at every school under the age of 30. So as well as even older than three, but at definitely, you know, every district should have that. So it couldn't have been financially easy either because I'm sure there's somebody out there thinking, well, I couldn't hire a lawyer.

I mean, a lawyer wasn't cheap. Um, but of course, you know, again, you, you defined your support system and find people that can help you out through that and just make sure that you know, you, you do whatever you can for your kid, right? You find ways to get through it and just make sure that they can have everything that they need.

Yeah. I mean, it's, it's a priority. Yeah. So you're right. And so, and it, and thank goodness. It was it turned out really well. And so then he was at this preschool and then he did, he attends kindergarten there too. He attended kindergarten at the local school district and I will say that. After that, we did have a really good relationship with the local school district.

It was rough at first, but, you know, after talking with them and, you know, having them send him to that preschool, we ended up having a really good relationship. Yeah, because you don't have to burn bridges. You're just trying to do what's best for your child. And it doesn't mean like if the district doesn't have the resources, then you, then you.

It doesn't mean that they're bad people. It just means that they just didn't have what he needed. Exactly. But it sounds like they came around and then really, you know, said, we're going to, we're going to help at this point. We're going to do what we can because it, I'm sure it got to a point where including him.

Into, you know, with other kids made a big difference at that point. I think they were very accommodating with that and everything, you know, we all worked together to make sure that he had the goals that he needed. And then, uh, for me, it's always my goal for Caden to be as independent as possible, but if he needs support to have it there.

So when he was in kindergarten and first grade, he was in the general education classes. But he had a classroom aid there sitting with him to help him with everything that he needed and to help him stay focused, which I think is great. Yeah. I think that you know, he needed, he needed to be in with the other kids so he can model off of their behavior.

Yes, he did get pulled out for his therapies and things like that, but he needed to be able to see how these other kids interact with each other and how they do everything. So Katelyn had whatever. Um, people may or may not know, but called an IEP, which stands for an individual education plan. I personally think every child should have an individual education plan because they all learn differently no matter what.

But did you find it challenging for the school too, you know, follow that plan? Did you have to like keep tabs on them? Making sure that they're compliant?  I think that. They follow it, but I think you do, you need to review those, um, things that they send home every nine weeks to make sure that he's staying on track and just make sure that, um, you know, he is following and he is reaching the goals that he needs to reach.

And if you don't think that he is, or he or she is reaching their goals, that you're, you know, asking the right questions, making sure that you're staying on top of it because, you know, I hate to say it, but. There are just so many kids that are on IEP is that you know, sometimes kids just get lost in the shuffle and you need to just make sure as a parent that again, you're being the biggest advocate for them.

And you need to make sure that you stay on top of it. Absolutely. I love that you're doing that because. Sometimes as a pediatrician, they'll come back and see me and say, you know, we're not seeing progress or we're not. So I'll say many times, like, let's take a look at the IEP and I'm not saying that things, you know, I'm not trying to put down the school system, not at all because I mean, they Mo most of the time do such a wonderful job, but there could be little things in there too that, you know, would make a big difference.

Right. And so it is important, I believe as a parent to have those, you know, regular, you know, interventions where you're meeting with them, or just finding out how is he meeting the targets that they had set for him. And if he isn't why and what we can do about it. And I will say too, that, um, you, don't be scared to ask a question with the school district.

Like if your child's having a hard time with something. I would express that to them. And I know with both school districts that Kaiden has been to, they've been very responsive. Well, we can put this plan together or we can do this visual schedule for Kaiden to help, which is awesome. Like, don't be scared to ask, like there, these people are always willing to help and make sure that your child is, you know, succeeding in what they need to now.

How, how do you feel like he's doing in general? At home, for example, like, do you find that it's difficult at times to manage his behavior? I know you and I, at one point talked about, you know, the possibility of medication, but you knew Kaiden, obviously you're his mom. And I always say parents know their kids very well.

And you felt in your heart, he, he doesn't need it. And now, of course, Looking back. He's done so well without medication. So tell me your thoughts about that and really how you kind of stuck to your guns about just being like this. I don't think this is what's going to work for him. My husband and I, we've always just thought that that's not the route that we want to take.

You just find another rate, other ways. Like we know that when Kaiden gets upset, sometimes he just needs a really big squeeze and you just hold them and squeeze them. You just find other ways to make them feel better. Just listen to them, know the cues that you can see from them, and work with those.

And you know what else? That I've really been impressed that I want others to know. And that is you never treat him. Like he's a child with a disability or special need. And that's amazing because if he does something wrong, then you discipline him. If it's not working out, you change the situation. If he does something great,, you reward him just like you would your other child.

I really believe that that's important too. Yeah. I mean, I don't want Kaiden to feel like he's different than anybody else. Like yes, he learns differently. Yes. You've used things differently, but he's still a child. He still needs rules. He still needs to be able to, um, listen and that's not easy because it's much easier.

To, you know, feel guilt or feel bad or feel sorry for, you know, your child, if there, if there is something that, that they are dealing with, no matter what the diagnosis is, no matter what their, you know, medical, physical, mental, You know, issues might be you're right. You just have to love them. You just have to treat them like they are, and they'll do so much better that way then, you know, always feeling like, and he'll, become more resilient and be able to go on and, and do more on his own because you've really, you're, you're guiding him, you're holding his hand, but you're also, but he still has expectations and, You know, watching him grow, I've seen, you know, how well you've worked with him, both of you, both, you know, you know, his dad as well as yourself.

What are some other thoughts you would want to share with people who are just starting this journey? I would say, um, just be patient with yourself. Like I know it's a really hard journey and it seems like maybe it'll never end, but just remember that. Every minute, every month, every year, it's going to get easier.

You're going to get through it. Make sure you have the people that you need with you. Just embrace their differences. I always see Kaiden doing his little silly things and I just think he's hilarious. He's such a funny little boy and some people will say. Well, we need to do this to make sure that, you know, he's acting more like a typical, okay.

But I want Kaiden to be Kaiden. I want to make sure that when I see Kaiden, I'm still seeing that silly little boy jumping up and down because he's just so full of excitement. Do you know what I mean? Sure. I mean, you know, the main things are, you know, is the achieving academically?

Is he making friends and being social? You know, what is his self-esteem about? Because he gets to be himself and you know, is he. And so I think that's really important. And if all of those things are okay, then yeah. Letting him, you know, be, have his own personality, just like any child is, is so important.

I think too, that it's important. Not only, only to educate yourself about, you know, different kinds of disabilities and special needs, but also to encourage your friends and family to educate them. Just so, you know, they understand more when they see your child with a special need and why they're acting like that or why they're talking that way.

I think that it's really important to be able to interact with anybody. If it's okay with you, I'd like to share one of the things that, although it's changed now, one of the things that. You know, that was a trigger for him, was singing and even more specifically happy birthday. Talk about that.

When Kaiden was younger, I would say it's started probably around three or four. He had a really hard time with the happy birthday song. Like he, we would have to leave birthday parties early, or, you know, if they were really close friends, we'd be like, okay, we're going to go in the other room now.

He just could not handle the happy birthday song. Like it just threw him into the biggest meltdown and, you know, to anybody else that doesn't know someone with special needs or been around anything like that, they're like, wow, that's really strange. And, you just have to learn how to, accommodate your child.

Like, we, we would just have to go on the other room or we would leave early and, you know, It was amazing when I say like, you should always, um, praise your child for their accomplishments. It's like, I can't remember. It was a year or two ago when he finally started singing the happy birthday songs and we were all like, my goodness.

Did this happen? And it's just so amazing to see how much he's grown. Yes. So being able to like really close people and, and friends, family, which I would imagine if you're there, I'm celebrating and we did, we. It took a while. I would say for the family to not understand, I think everybody was always understanding, but to remember, you know, because something like happy birthdays, Common, but it was no big deal at all.

You know, we just all learned and we still had cake and we still had parties and we still had fun and everybody just enjoyed it because, in our family, we realized that we would much rather have Caden with us than to have him have to leave or walk, even go into the other room too. I mean, even his sister being at such a young age, USO understanding.

You know, we're not going to sing happy birthday to you on your birthday, but it's for your brother. And she loves him so much, even at like four years old that she was like, okay, do I still get my presence and my cake? Yeah. Okay, then I'm good. Yeah. No, I think that's great. But, um, it is, it is just kind of learning, but you know, what else is that you also don't have to make excuses.

It's, it's, there's a difference between. I'm making awareness and excuses. Wouldn't you say? Because is there's no need to make excuses, right? It's he just, he is who he is and we love him for it. If there's something that's going to upset him or bother him, I'm, I'm going to be straightforward with it. And I'm going to say, well, we're either going to have to go in the other room or we're going to have to leave.

And I hope we're not trying to offend anybody, but that's just how it is. Yeah. And I mentioned that because I. Families to, to model what you're doing and understand that there's, there's no need to make, you should use. You should never feel ashamed. Not at all, not at all. And you know, because every child is different, no matter who they are.

Right. So Kayden, do you have any, hold on, I'll be right back. Keep going. Um, yeah, so I, I agree that, uh, you know, It's your it's Caden. It's not Kayden who has autism, right. It right. Like I said before, it doesn't have to define him. So tell us now, you know, we, you talked about how he wasn't talking and things like that, and now we know he can sing happy birthday.

Where would you say? You know, his development is right now. So, you know, we're actually going through the ETR process right now, which is a three-year evaluation. Um, so when he had his last evaluation, they moved him from severe to moderate, which we thought was great. And we totally agreed with that and we're going through it now.

And I don't know where he is going to be, but I definitely think that he would be more mild or moderate than he was before. He still does have a hard time, um, with his speech cognitively and, you know, receptively. And so I do think that you know, we still have to work with that and that's what his IEP is for and his speech therapy, but just with his behavior alone, I've seen so much growth with that.

And I, I mean, partially because of his age, but I think too, just with everything that the school has done for her. Also, he's just come such a far away. I mean, I can tell it's there was a time where he didn't necessarily make eye contact and now he definitely makes eye contact and you couldn't have a conversation, you know, per se.

It's easy to have a conversation with him. And he asks about my day and how I'm doing, and it's all very appropriate. And he also is, seems to be listening and understanding things better, which I think is awesome. And the other thing that I noticed too, is he likes hugs. Cause I remember there was a time where he really didn't want to hug her kiss goodbye or hello, and, um, I love that about him.

He loves to give hugs and he'll give me a thousand cases a day if he could. And I will never want that to go away. That's right. I would, I could agree. I'm a mom too. And I would say that is pretty awesome. Any, anything else you'd like to mention? As I really am so appreciative that you have come and taken the time because I really believe others need to hear your perspective and especially about, you know, being an advocate and getting him involved in early intervention.

Those are things that are so important because I'm sure, you know when you first get that diagnosis. Everyone would feel sad, sad for themselves, sad for him. But you guys decided let's, you know, work, we're gonna make this. We're not going to make this. Um, you know, we're gonna make this good, we're gonna, we're gonna make sure that he gets everything that he needs.

And he certainly has come a very long way. Yeah. I mean, one thing that I would say is that you're going to have bad experiences. You're gonna have a lot of bad experiences with any child, you know, it's going to happen, but, you know, especially with a child with special needs. And I just want to say don't.

You know, like if you have this bad experience, you learn from it. And just remember that, yes, it was heartbreaking for you, but it was heartbreaking for them too. And you just need to move forward and try again, you know, and then also with their accomplishments, just, you know, make sure that you celebrate everything bigger.