On this episode, I welcome Katie.

As part of my “A Mother’s Message” series, I welcome moms to discuss things they would like to share with their world. This series is meant to inspire and educate moms through the experiences we go through as mother. Our hope is to also spread acceptance of diversity, especially neurodiversity, in honor of Autism Acceptance Month.

Tune in as we talk about when her daughter was diagnosed with autism, the process in getting the diagnosis, how she navigated the process, and a message she has for parents of both neurotypical and neuroatypical children

00;00;08;24 – 00;00;18;24

Dr. Mona

Welcome to this episode. This is part of my mother’s Message series, talking with moms about their children and giving messages to the world. Thank you so much for joining me today, Katie.

 

00;00;18;28 – 00;00;28;11

Katie

Oh, thanks for having me. I enjoy being able to put a little light on somebody who has autism, and especially a girl, because we don’t really get a lot of those stories.

 

00;00;28;18 – 00;00;50;14

Dr. Mona

And that is why I’m just so grateful that you responded. I had put up on my stories, you know, if anyone was interested in coming on the podcast. And I so appreciate you reaching out. It means a lot and exactly what you said. You know, we do tend to have more of a diagnosis in boys. I talked about that in another episode today, but yes, girls can sometimes be later in the diagnosis because we, you know, think that they may be doing other things.

 

00;00;50;14 – 00;01;01;06

Dr. Mona

And we’re like, we push off that diagnosis sometimes. So when was your daughter diagnosed and also when did you start noticing maybe some characteristics that maybe ended up becoming the diagnosis of autism?

 

00;01;01;12 – 00;01;27;00

Katie

So she was formally diagnosed finally on March 27th of 2017. So she was a little three months ish old. But we had gotten her into an early intervention program, which is to because I was worried about her speech. And so when I did the the intake paperwork with the early intervention program, I was really concerned about her speech on this word.

 

00;01;27;12 – 00;01;48;07

Katie

A lot of rote speech. You said, well, what else? What do you mean, what else? Well, usually if somebody has one issue, there’s going to be more. And so they sent me was the days to fill out for sensory stuff too. And that’s kind of what it’s like. Well okay, so she never took a bottle or a pacifier and she only sleeps for 45 minutes at a time.

 

00;01;48;07 – 00;02;12;03

Katie

And she hates loud noises and she doesn’t, eye contact. And she stares at spinning things all the time. And so it’s kind of this cascade of, oh my gosh, it’s so many more things. And then shortly after we got her started in their program, the therapist started saying, you know, this might be autism. It’s a little hard to tell, especially, she’s not presenting a lot of typical, things attributed to it.

 

00;02;12;03 – 00;02;30;02

Katie

Maybe, you know, just keep an eye out and then, whatever. Her birthday came around and took her to her. Well, visit her pediatrician, and they have a 20 question form like this. Or could have autism. And she, like, everything was flagged all that like 3 or 4 questions. So we got our referral from there.

 

00;02;30;09 – 00;02;46;27

Dr. Mona

And I think that is probably the mCAT. Does that sound familiar to. Yeah. So I actually I talk about the, chat on another episode with, Mrs.. Sweetpea, that’s a speech therapist. So you guys can listen to that episode because we go over that mCAT. Actually, in a little bit of detail so that parents know how to respond to those questions.

 

00;02;46;27 – 00;02;56;21

Dr. Mona

So you feel like maybe around two years old was when you probably started to feel that there was maybe some characteristics? Or do you feel like there was something looking back, like a little bit earlier than that?

 

00;02;56;24 – 00;03;15;09

Katie

Well, looking back, like you can see it all, like, it’s so funny how you just sat there like, oh, everything is completely normal. But she’s typical. She’s so typical. And then, you know, one brick falls into place and then the next, and then you’re like, oh my gosh, I can see it. Like you look at home videos, little clips and be like, there it is, there it is.

 

00;03;15;09 – 00;03;31;29

Katie

So it’s like the lack of eye contact sheet, the lack of sleep, whichever was it? Oh, you know, she’ll grow out of that. You know what? She’s not nursing anymore. Well, we can’t stop nursing, which is 18 months. Well, she still. And she was a really unhappy child. She just upset all the time, and there was nothing we could do.

 

00;03;31;29 – 00;03;45;21

Katie

And I mean, now, like, she has more tools, but at the time, it’s it’s hard to know when you’re in it until somebody kind of that reassurance that, oh, no, what you’re seeing is not pretend this is real and it’s happening.

 

00;03;45;27 – 00;03;59;14

Dr. Mona

And does she have any you know, you’re saying something about the bottle and the pacifier. Does she have any looking back, like, does she have any issues with eating like, what she, perceived to be like a picky eater? And that was just kind of told us she is a picky eater or was it that she was a good eater?

 

00;03;59;14 – 00;04;00;23

Dr. Mona

What was the eating like?

 

00;04;00;25 – 00;04;17;09

Katie

So she was and continues to be a picky eater. We’ve actually done a lot of eating therapy, but at the time it was like, well, she’s still learning to like things. So that was kind of the thing. Like, oh, you know, just keep it with the exposures, keep trying. And as time went on, she lost more and more food.

 

00;04;17;09 – 00;04;26;19

Katie

She got super restricted with her diet. I mean, at the time I didn’t think too much about because my husband’s a bit of a picky eater. So I was like, oh, maybe, you know, we’re just not trying hard enough.

 

00;04;26;21 – 00;04;43;00

Dr. Mona

Well, the reason I’m asking, you know, when we look at the characteristics and to make the diagnosis of autism and you, like you said, you you started feeling more at two years old. And then the official diagnosis was made at three, which will get into a lot of the characteristics are not all listed on like a pretty paper that says, oh, you check this box and you check this box.

 

00;04;43;00 – 00;05;03;10

Dr. Mona

And so it can be really hard to make that diagnosis. I’m actually really interested that you brought up the sleep, the eating and obviously the unhappy all the time, because I actually know that’s not an official diagnosis. Right? I know that those individual things are not on like the DSM five criteria, but I notice that if I see a child that is having concerns with all three of those domains, right?

 

00;05;03;10 – 00;05;22;02

Dr. Mona

Sleeping, eating and behavior, I want to talk to the family. Hey, is this something that we need to change in terms of how we’re approaching the boundaries, or is it something that that’s going on with the child in terms of not being able to settle and not being able to understand those boundaries? And that is when I think it’s really important that there’s a big distinction because it could be totally different diagnoses.

 

00;05;22;02 – 00;05;36;26

Dr. Mona

Right? It’s one is that we need to work with the parents. One is that, no, we truly need to work with the child because, you know, there is a developmental, diagnoses that we have to make so that they can get the services to help them be, you know, more explorative, either eat or sleep like, you know, help with their sleep.

 

00;05;36;26 – 00;05;42;16

Dr. Mona

So I think that’s really interesting that you brought it up. I know we didn’t speak about that before this episode, but I was just curious if that happened.

 

00;05;42;23 – 00;06;02;03

Katie

Well, it’s nice to hear from you that, you know, presents as like a flag for you because we were kind of brushed off there saying, yeah, that’s a problem. And, you know, here’s some sleep training guides. And I mean, the sleep training, it was a joke. I, I lost more sleep trying to train her than just getting up every 45 minutes and putting her back down.

 

00;06;02;05 – 00;06;02;16

Katie

And I think.

 

00;06;02;16 – 00;06;27;03

Dr. Mona

The hard part of all this, right, like I mentioned earlier, is that what you’re describing individually, I can see why us as pediatricians or anyone you’re talking to, like a friend would say, yeah, Katie. Yeah. You know, every child is not a good sleeper. Every child is a picky eater. Every child has tantrums. I get that, but I’m honestly, Katie, I’m so glad you’re mentioning this because I have been like, this is my like, I preach this a lot and I talk to families a lot and I say, look, I’m not saying that it’s I’m concerned.

 

00;06;27;03 – 00;06;43;14

Dr. Mona

I’m just saying we need to watch this because if this is happening, I want to work with you all on how we can maybe get some services if we need to. Now, do you feel like looking back, you mentioned briefly, do you feel like when you look back at everything, do you feel like your clinician was understanding of the concerns, or do you feel like it was dismissed?

 

00;06;43;14 – 00;06;48;18

Dr. Mona

You mentioned briefly that maybe a little bit, but I’m just curious how you felt the medical community, approached this diagnosis?

 

00;06;48;18 – 00;07;07;16

Katie

Well, we have been pretty lucky in that we have a nurse practitioner who is her primary care, and she has been so open and supportive, like basically anytime I mentioned something and I say this is an actual concern for us, she has been really good about. Okay, well, I’ll get you some numbers. I’ll send in some referrals, whatever you need.

 

00;07;07;22 – 00;07;24;23

Katie

And as younger your baby days practice we go to has like seven different providers. And so we kind of got cycled through a lot of them. And so we took down the people who we didn’t feel are very supportive. We don’t see them anymore. But initially a lot of it was just like, oh, it’s fine. She’s going to grow out of this, you know, just more exposures to do this, do that.

 

00;07;24;23 – 00;07;29;03

Katie

And, you know, a lot of the time it didn’t really work out the way they had assumed it was.

 

00;07;29;06 – 00;07;36;26

Dr. Mona

And when how was the official diagnosis made? What did you have to go to a specialist or was that just with your your nurse practitioner, or how did that happen?

 

00;07;36;26 – 00;07;59;15

Katie

We saw a developmental pediatrician and that was that day. Like, if I think about it too much, I start crying because it was so traumatic for all of us and not necessarily the actual like receiving the diagnosis, but the testing that went on that day. It was early morning. It was in the big city that we live adjacent to, so we had to like get her up early, which doesn’t work very well for her.

 

00;07;59;15 – 00;08;19;17

Katie

And we had to take her to an office she had never been to. And the, diagnosing doctor was a man, and she at the time was terrified of men. And so he was there. And he’s kind of this older, gruff guy and basically said she was untestable. She just laid on the floor and had a meltdown for at least first 30 minutes.

 

00;08;19;17 – 00;08;35;29

Katie

And then I kind of coaxed her out of it. And he’s like, all right, she needs to do. I want to say it was like pretend play pouring from a teapot to a cop or something like that, but she just kept taking the lid off the teapot and putting it back on. And so he he asked my husband and I said, so what do you think’s wrong with her?

 

00;08;36;03 – 00;08;58;13

Katie

And I go, what, like, we’re here to talk to you about this because why are you here? I said, well, her therapist from Early Intervention thinks she might have autism. And we did that little screener at her pediatrician, and he goes, well, do you think she has autism? I’m sorry, I don’t know. And he’s like, well, unless you’re lying to us and your therapists are lying to us.

 

00;08;58;13 – 00;09;13;07

Katie

She definitely has autism. And, I’m assume he had her at level two. He typed up a bunch of stuff that we’ve sat in the lobby while he’s typing all this stuff for, like, 30 minutes. She’s a mess and I’m just shaking, so like, what the heck even just happened? And then he sends us home with a packet.

 

00;09;13;07 – 00;09;27;08

Katie

He says she has autism. And here’s a list of all the providers for therapies in our area. Good luck. The waitlists in our area are super long, so you want to start making phone calls now? That was. Yeah, a crazy day.

 

00;09;27;10 – 00;09;30;23

Dr. Mona

Katie, I’m so sorry. And that was when she was three. Correct.

 

00;09;30;26 – 00;09;48;04

Katie

Free. Like whatever, 2 or 3 months at the time. I feel really lucky to have gotten the diagnosis. So early because the, therapist of the early intervention had said, you know, it’s hard for girls to get a diagnosis and this might go on for years. And I just want to give you the heads up about that now.

 

00;09;48;08 – 00;09;59;26

Katie

So we had gone in not necessarily anticipating getting a diagnosis at all or maybe an alternative diagnosis, but, I feel I feel lucky that we got what we needed to get services, basically.

 

00;10;00;03 – 00;10;15;14

Dr. Mona

Well, I’m just really sorry to hear that. That’s the way you got the diagnosis. Look, I was like, I mean, I can’t speak for everyone in the medical community, you know that. But, you know, one of the hardest things for me is hearing that because, you know, how isolating that feels to get that diagnosis right. You’re already there.

 

00;10;15;18 – 00;10;29;29

Dr. Mona

You even though you have the idea to hear those words come out, it can feel so lonely in that moment, even though, you know, like, what does it mean? What is this? What am I going to do? And the, the least that we can do on the other side, even if we’re busy, is just to say, what can I help you with?

 

00;10;29;29 – 00;10;44;25

Dr. Mona

What are you feeling? You know, and I hear that and I’m so sorry that this brings up emotions for you. I’m really sorry that I’m. I’m getting a little emotional, too, because I can only imagine how lonely you felt in that moment. Like how how did it feel getting that diagnosis? Not necessarily that moment, but in general.

 

00;10;44;26 – 00;11;06;10

Katie

I was heartbroken, but at the same time, I wasn’t surprised because we’ve been going through like, let’s say like 9 to 10 months of therapy at that point. So we’ve been, oh my gosh, you are getting teary. We had been around therapists and other families who had kids on the spectrum with other developmental delays enough to see like, okay, these dots are connecting.

 

00;11;06;17 – 00;11;27;17

Katie

But at the same time, I just on the ride home, I was just crying silently. I’m texting my friend because she was so confused, like, what’s what’s going on, what’s going on? And my husband is holding my hand and we’re not super touchy feely like that. The car was holding my hand the whole time because you could just see that I was just a mess and it was so funny because as soon as, like I got home out of the car, I got her out of the car, speeding out some food.

 

00;11;27;17 – 00;11;41;06

Katie

I was like, okay, well, I am now going to call every phone number on this list. It was three pages run back. I just started making phone call after phone call. All right. What insurance information you needed by my brain when I needed to, like. All right, I’m going to solve this problem, and we’re going to be fine.

 

00;11;41;06 – 00;11;59;26

Katie

And it wasn’t until I spoke with, a lady at an ABA facility that she, she said, hey, how are you doing? And then I just started sobbing on the phone with the stranger for, like, 20 minutes. Like you’re allowed to cry. You’re allowed to have these feelings. It’s not your job to fix it. Your kid has had autism much longer than you’ve been told that she has autism.

 

00;11;59;26 – 00;12;15;14

Katie

You’re doing fine. And so, like, that was kind of like, you’re right, I’m. I am doing fine. She’s doing fine. Even if I did nothing right now, she’s going to be fine. So it was a lot of I need to fix that. I need to fix that. I think a lot of moms especially go through that’s like, all right, here’s the problem.

 

00;12;15;14 – 00;12;16;28

Katie

Let me fix it. We’re going to be good.

 

00;12;17;04 – 00;12;25;07

Dr. Mona

And at that point when you got the diagnosis, did you know anyone else like personally that had gone through similar experience, like children who had similar diagnoses or no.

 

00;12;25;11 – 00;12;48;27

Katie

Yes. Because we were in that early intervention, program. And so their part of therapy was a preschool setting where she was, well, typical and atypical. Here is to kind of learn how to socialize because she is an only child. So she wasn’t getting a lot of family socialization, with other kids. And so we had met some and one of them, actually the dad works with my husband just by all chance.

 

00;12;48;27 – 00;13;04;27

Katie

So we have, you know, a small community. And it’s gotten bigger. The more we’ve gotten involved, the more years we’re in this, you know, more people. But yeah, initially, none of my family, none of my friends, the closest I have my my aunt has a child with Down’s syndrome. So I call her like, oh my God, what do I do?

 

00;13;04;28 – 00;13;30;24

Katie

And so that was like the major touchstone. But we’re lucky that my family, who lives close by, is very supportive of my daughter Rachel and myself and my husband. They’re like, you know, we’re cool. We got this. What do you need us to do? What do you want us to know? So that’s been it’s hard at first, but once you start putting feelers out, you will find there are so many more people than you think who have experienced autism or really so many other things too.

 

00;13;30;26 – 00;13;54;01

Dr. Mona

Oh, yeah. And I mean, like I said, I know you’re saying that you had an idea that this diagnosis was coming, but when you actually hear the words and hear someone say it, that that wave of emotion that comes on and the what if that come on and it is a very isolating experience, and then you find that community and the community exists, even if it’s strangers that you meet on social media or whatever, that is, it’s like, it’s just so nice to meet people who just resonate with what you’re going through.

 

00;13;54;01 – 00;14;02;01

Dr. Mona

And, I, I’m sure that was so helpful to you to help navigating the process of finding early intervention. Also like the services that she needed.

 

00;14;02;05 – 00;14;18;18

Katie

Well, early intervention, I don’t know how it works in other states, but it’s, you know, first to free you. They have centers that have all the therapists you need basically. And if you need therapy that you don’t necessarily have in house, they bring the people. So part of her early intervention program was like I say, a preschool.

 

00;14;18;18 – 00;14;46;29

Katie

And in that preschool they have, speech therapists on his kits. So she was getting all of those services while she was in school already. And every now and again, I want to say, like, every other week, a speech therapist would come in house and come to our house for like an hour, and do that. So we actually, like probably the easiest part of everything we’ve had to do for her is getting the early intervention, because it was like the first phone call I made, whatever the company was, they picked up the phone.

 

00;14;46;29 – 00;15;06;08

Katie

They got us in within a couple weeks. It was really that was probably the easiest part. Everything since then, it’s kind of been like a rocky hill to climb. We’ve been lucky, I think in our state early intervention is pretty well funded. It’s well known there’s a lot of advertising for it. So I think, that wasn’t too rough.

 

00;15;06;11 – 00;15;11;01

Dr. Mona

And so then after obviously early intervention, she went into AB therapy or something else.

 

00;15;11;08 – 00;15;38;07

Katie

So when you age out at three. Yeah, they do more testing through your school district. So some kids who did early intervention will not meet the same criteria needed to do, stuff for your school district, IEPs, 504, stuff like that. And she had gotten and so she got in with our school district doing, preschool there. And so they had similar stuff.

 

00;15;38;10 – 00;15;55;17

Katie

In house. And then we got her. Finally she got off the waitlist for ABA. It took about nine months. I want to say that was really rough. She got into an an intensive AB program, so it was a 12 week program. And her school. So the school district was in the afternoon, the 88 was in the morning.

 

00;15;55;17 – 00;16;14;29

Katie

So we’d get her up in the morning three hours a day. But they also had, one day a week, parents had to stay and do training their feeder lunch, take her to school so she’d have a full day of therapy. And, she got on a waitlist to do in-home ABA. But by the time she got to the top of the waitlist, she was in kindergarten.

 

00;16;14;29 – 00;16;36;27

Katie

And it was only during school hours. So we haven’t been able to do more ABA. But we also did, feeding therapy, a few rounds of that. That’s 12 weeks at a time. So it never really ends. It gets harder when they’re in school because there’s fewer hours in the day that are available to do these therapies that aren’t necessarily for educational purposes.

 

00;16;36;27 – 00;16;39;28

Katie

So it’s not included with your IEP or your final four.

 

00;16;40;00 – 00;16;52;05

Dr. Mona

So right now she’s seven. So she’s in first grade. She is so at right now in her school she is getting the services in her school like the IEP and 5 or 4 in place or whereas. Yeah.

 

00;16;52;08 – 00;17;17;00

Katie

So she has a 5 or 4 right now. A few months into kindergarten, she transitioned from the IEP to the 5 to 4. So that means that she’s no longer getting specialized education. She still has supports. So, for her, she has, special the special ed bus because the closest bus stop for, our school is like four blocks away, and she has, some problems with, being startled.

 

00;17;17;00 – 00;17;38;01

Katie

So the car goes by really fast, or a horse horn honks. That’ll your problems, such as door to door, bus. And she has a stall in the cafeteria. So when she sits down, feet are flat on something because she is, positioned properly for eating. Because that’s something she still struggles with. She has access to the staff bathroom so that she does have to go through the flushing toilets, because that’s something that startles her.

 

00;17;38;03 – 00;17;57;02

Katie

She has access to, sensory toys. She’s allowed to leave the classroom if it gets too much. She has headphones that she could wear if it gets too loud. So while she’s no longer receiving, services, the speech and the OT, those are the supports she has. We haven’t sought outside services this year because of Covid.

 

00;17;57;07 – 00;18;23;19

Katie

Really trying to reduce risk. So she had to stop doing her swim lessons, which has been rough. She has one on one swim lessons at the YMCA that Medicaid pays for. We’re trying to get her into horse therapy. That right now it’s not shut down. So everything’s kind of stalled out. And we’re lucky that she isn’t necessarily losing anything by having this pause, because I know a lot of families, it’s been so much more difficult for them when their kids aren’t able to get this stuff right now.

 

00;18;23;21 – 00;18;40;29

Dr. Mona

Oh yeah. I was just going to ask because I we’re dealing with that in our in our practice, you know, a lot of our families who have had these things stalled and it really regress. I mean, a lot of the service. So basically what we’re talking about, everyone is like these services are so important for children, right? I mean, when they’re getting it, we see changes, we see them progressing.

 

00;18;40;29 – 00;18;55;21

Dr. Mona

But when we stop it, especially when they’re younger. Right? I mean, maybe because she’s a little bit older, but when we like to say I have like a four year old or five year old, and when we stop it, it’s like we backtrack. And the goal here is early intervention. The goal here is getting the services. And we’re talking about services.

 

00;18;55;21 – 00;19;12;28

Dr. Mona

We’re talking about whether it’s feeding therapy, the equine therapy, whatever therapies we’re doing so that we can allow, the family and the child to, you know, to learn, the skills they need. I’m so happy to hear that you didn’t have that experience. But it’s really important that people do hear that. Like, that was something that I just don’t think people understand about this pandemic.

 

00;19;12;28 – 00;19;29;26

Dr. Mona

You know, we are all going through something. But my families who are going through losing the services that they need it for their child was probably the most hardest thing about this pandemic and why, when I would, you know, people are like, well, why is this family doing this right now? Why is this family, you know, doing this and live judgment that would happen for families?

 

00;19;29;26 – 00;19;53;10

Dr. Mona

I’m like, we need to be very kind and understand the situation here. We need to be very understanding and empathetic. And honestly, this is why I’m doing this series, because I just really wanted people to understand what is going on in the world. With life. We need to be kinder. We need to kind of understand that, you know, I’m so happy that, like you said, you guys have been okay here, but it’s like so many families are just going through this, and I know you are, too.

 

00;19;53;10 – 00;20;03;18

Dr. Mona

I mean, even though she’s okay, I’m sure ideally, we’d want our child to get those services if they could. And the stuff that you were applying for, you know, had to be halted. I mean, that’s that sucks. I agree with that.

 

00;20;03;22 – 00;20;24;08

Katie

Yeah, she’s pretty resilient. I will say that when us March 13th, when the world shut down and they cut school here she was in kindergarten. We’ve just moved this summer before this new school district, this new neighborhood. She didn’t know anybody here. She had one friend in her classroom who she wasn’t going to see anymore because she can’t go back to school.

 

00;20;24;08 – 00;20;45;13

Katie

And for like three months, she was probably in the worst shape she’s been since before we did Early Intervention. We had meltdowns almost every day. She has selective mutism. She gets really, overwhelmed with so many silent days. And so we’ve worked past that at this point, and we were really frustrated, too, because we wanted to get her to see a therapist, just talk about our feelings, work through things.

 

00;20;45;13 – 00;21;05;00

Katie

But in our state, they weren’t seeing people in person. So she doesn’t do a zoom call. She’s she was six like she doesn’t care. She wouldn’t have no connection to anything. So change is hard for people with autism usually. And for her that is one of her especially like issues is transitions in, not knowing what to expect.

 

00;21;05;03 – 00;21;22;01

Katie

She talks now about I can’t wait on us to be over. When can I get my shots? My husband and I are. We’re half vaccinated now, so we’re very excited about that. But she wants to know when she can do it because she wants to go to Disneyland. She wants to go visit her cousin. She wants to do the things that we were doing.

 

00;21;22;01 – 00;21;25;28

Katie

She has a bit harder of a time understanding why not.

 

00;21;26;06 – 00;21;47;18

Dr. Mona

Yeah. Oh, I know I agree with this. I mean, it’s been so hard. And your Disneyland comment is like another thing that, you know, like I get a lot of people on my social media who are like, I would never go like, why would anyone do that and jeopardize their child? And I’m like, well, we have to also understand that even I have some families like that go because of the fact that this is something that their child really wants, and it’s something that will give the family some sanity.

 

00;21;47;18 – 00;22;04;27

Dr. Mona

And I don’t think that that’s a bad idea. If the family weighed benefit and risk, you know, it depends on the family situation. But I totally I’m so I’m so wanting this pandemic to be over so that we can move on with our lives. But I’m so glad to hear how resilient she is. And kids are super resilient, so she’s just a testament to that.

 

00;22;05;15 – 00;22;15;09

Dr. Mona

What what do you wish, like other parents could know about your child? Like, what do you think some of the misconceptions are? What do you think? You know, you you have a platform here now. Like what? What do you want to tell the world here?

 

00;22;15;14 – 00;22;43;15

Katie

Oh, boy. I’d like to say Rachel has always had autism. She always will have autism. And she has spent the majority of her life doing things and learning things to fit the mold of typical. And with that being said, I can guarantee nearly none of the people she is in a classroom with have done that to try and help get them selves wrapped around somebody with a disability.

 

00;22;43;20 – 00;23;03;01

Katie

And so she’s been in school learning how to just exist in a world that wasn’t meant for her since she was two years old, and there’s so many things she can’t do, there’s so many more that she can’t. She has an encyclopedic knowledge of Disney things. You can show her a pic like a corner of a picture, and she’ll tell you what scene that is from a movie.

 

00;23;03;01 – 00;23;22;20

Katie

She knows everything about the solar system. She’s the kindest person you’ve ever met in your entire life. She doesn’t want to hurt anybody’s feelings. She has an incredible sense of humor. Her sarcasm is going to be so good. I can just feel that coming already. Her friends are riding bikes with two wheels and she’s is a free will scooter because she doesn’t have balance for a bike.

 

00;23;22;20 – 00;23;44;29

Katie

She she can’t walk to the school bus because it’s too loud. She loves to play with dogs, but she has a hard time playing with people. She doesn’t read people’s faces well, her face not match her feelings, and that’s okay. And we shouldn’t necessarily want her face to match her feelings. She doesn’t make eye contact with people, and I would never force her to do what makes her incredibly uncomfortable.

 

00;23;45;01 – 00;24;02;04

Katie

And someday she’s going to be a person who’s an adult, who may have a job, who may live on her own. Maybe not as much as she’s meeting people where they are. People need to meet her or anyone with any disability where they are too, because they are genuinely trying the best they can.

 

00;24;02;06 – 00;24;22;16

Dr. Mona

Oh, this is so true. You’re making me emotional because I look, I’m I, I started Pete’s dog talk. People don’t understand like I know I talk a lot about neurotypical content. You know, I talk a lot about neurotypical content, but the the point of stop talk comes from a place of taking care of so many families who are.

 

00;24;22;16 – 00;24;24;04

Katie

Not neurotypical, you know, Horton.

 

00;24;24;04 – 00;24;41;08

Dr. Mona

Or it’s just. And when you when I say that, it’s because I see so many families, I meet so many amazing people. And I have realized that sometimes we worry about things. I’m going to say it. Neurotypical parents worry about things that I sometimes think is trivial, right? I’m like, why are we think, why are we worrying about this?

 

00;24;41;08 – 00;24;56;03

Dr. Mona

Like, this is not something like, I think about all the families who have to go through all of the things that you’re talking about and so much other things. Right? And I’m like, as a pediatrician, that’s why I stay so grounded in terms of everything I see, right? I see everything I see families do so much with so little.

 

00;24;56;03 – 00;25;14;19

Dr. Mona

I see families who are thriving. I see families who are struggling. I see it all, and we need way more compassion. We need, like you said, like we need people to understand, to meet the child where they need to be met. We don’t need to hold them to a standard. That’s what we created as a society. And who decided that as a society, you know, like, why did we decide that?

 

00;25;14;19 – 00;25;25;19

Dr. Mona

Like, have you when you are out in public, have you been met with any like, do you have an example of something that happened in public that really, as a mom of an autistic child, really hurt you? Like I’m sure that’s happened or maybe not.

 

00;25;25;21 – 00;25;44;24

Katie

Oh my gosh. I mean, so many of how I choose. Well, as we all know, April, the autism in April in my state at least, is also spring break. We travel a lot. My husband and I were travelers before we had her and we decided, well, you can be miserable at home as easily as you can be miserable in the Caribbean.

 

00;25;44;24 – 00;26;08;06

Katie

So we would we take her everywhere. And, that includes a lot of things and like a spread our autism awareness all throughout the country, soon to be international, hopefully. But so often we find, she’s on an airplane and you’re popping. Most kids, you know, can get through it pretty easily. You know, give them some water, something to chew on.

 

00;26;08;06 – 00;26;26;25

Katie

They’re good to go. She was about 18 months old. I want to say. Yeah, that sounds right. We’re going to Mexico. And so it’s a long flight from the Seattle airport down to Puerto Vallarta. It’s like a half hours. She was being a rock star. Until about three hours in, she, she woke up and the popping was bugging her.

 

00;26;26;25 – 00;26;45;13

Katie

She just screaming and grabbing our ears, and, I mean, at the time, we didn’t know she had autism, but it makes perfect sense. Now, an older couple in front of us just lost their minds. And my husband and I know new parents. First international flight with our baby. We’re back again. And it’s just like, how easy would it have been?

 

00;26;45;13 – 00;27;05;04

Katie

Instead of turning around and saying, shut the baby up and do other choice words as it would have been to just say, you go and do something or ignore it because, you know, we’re mortified already. Absolutely mortified. And there’s been times we go to Disneyland because we were passholders until they got rid of the program recently, because they’re so good about accommodations for people disabilities.

 

00;27;05;04 – 00;27;25;11

Katie

We had no problem throwing thousands of dollars at Disney because they always took care of us. It didn’t make us weird, but a couple of times we would go and get our little disability pass for Rachel and they would say, well, what if she needs a stroller? Like, okay, well, and she has autism and I get a buckler in because she’ll take off, you will never find her again because she’ll sit there silently.

 

00;27;25;12 – 00;27;41;28

Katie

You’ll never see her again. Like, well, you can either have, the pass that lets you wait outside of a line, or you can have a stroller. It’s like, no, that’s not how that works. And then you get some parents at Disneyland example that would say, oh, you’re so lucky that you get to have a stroller in this line.

 

00;27;42;02 – 00;27;52;03

Katie

Oh, you’re so lucky. How did you get that tag? Well, in a kid with a disability, when you say that their face is just go white and you’re like, yeah, you deserve that one. You stepped it up.

 

00;27;52;05 – 00;28;08;10

Dr. Mona

Oh, yeah. Well, and this is the this is what I’m saying. Like we can we have a we have control over the words in our, in our mind. Right. We like you said like the couple on the airplane. That’s a great example. You have two choices. Like you said you don’t have to say anything. Even if you feel frustrated.

 

00;28;08;16 – 00;28;26;26

Dr. Mona

Just don’t say anything. Why? Why have we become a culture on social media and in life to say things to other people when it’s really not our place? I mean, it really isn’t. Even as a pediatrician who knows everything about child development, but it, I when I see another family struggling, I am very compassionate. And I also understand.

 

00;28;26;26 – 00;28;41;21

Dr. Mona

Right, I know exactly I know even if I know that it’s a tantrum. Right. I have and in the, in the airport, I’ve seen all the time people like like what is she doing? Why are they doing that? And I’m like, everyone, let the family do what they need to do. I’m like, they’re in control. They’re the family.

 

00;28;41;21 – 00;28;56;20

Dr. Mona

If they need our help, you know, we should be there to help them. I agree with you completely. That hurts. I mean, you are doing your best. We all are. And to get that, to be faced with that, I mean, when you’re already mortified, like you said, I mean, it’s not like you’re like, okay, well, let’s just do this.

 

00;28;56;20 – 00;29;15;00

Dr. Mona

You’re like, obviously trying to do your best. People just don’t get it. It’s just so hard. And I’m so sorry. I don’t know why I’m apologizing for these people, but it like it really is protective. I just feel like, why? Like why did you have to go through that? And I’m sure you, you know, you continue to go through it and little different microaggressions, you know, there’s microaggressions to families with disabilities every day.

 

00;29;15;00 – 00;29;24;24

Dr. Mona

And we need to teach our children. And we need to teach ourselves how to be more aware of these things. Like, I mean, it’s just it’s only going to get worse if we don’t look inside ourselves to, you know.

 

00;29;24;27 – 00;29;47;07

Katie

Yeah. No. And there’s such a push now, and I’m thankful for like, inclusion and integration and stuff in her school. So, there is more awareness with her peers, people who learn differently or look differently. They get to be in your classroom, too. And I like that. And I want her to feel different because she’s at that age now where she’s noticing her difference that isn’t she doesn’t necessarily like them.

 

00;29;47;07 – 00;30;00;18

Katie

So we bolster her confidence to obscene heights. We just want her to be as confident as she can be, because I know that there’s going to be people surrounding her in her life that may not have the confidence in her that she has in herself.

 

00;30;00;24 – 00;30;18;19

Dr. Mona

Okay, this was such a great conversation. I love this. I mean, I just think it was so important, you know, one to for any other parent listening to this that may be going through something similar, right, resonate like being able to feel like you have that’s that person and that story that really resonates. It really helps in healing and validation, like you said.

 

00;30;18;19 – 00;30;32;16

Dr. Mona

Right. Like when that that that lady on the ABA line said, how are you feeling? You know, it helps and no need. You know, as mothers, we don’t always need something to be done for us. We just want someone to hear us and say, this is hard. You know, I just want you to know what I’m going through.

 

00;30;32;16 – 00;30;48;13

Dr. Mona

So I, I so appreciate that. And then also, for anyone else who isn’t going through this, I think it’s important that they hear these words, right. The what you what you’ve gone through. I know many mothers have gone through, what would be your like final take home mothers message like for other a lot of moms listen to this also dads.

 

00;30;48;13 – 00;30;50;21

Dr. Mona

But what would be your final message to other moms?

 

00;30;50;24 – 00;31;12;00

Katie

You are not a superhero because you have a child with disability. You rise to the occasion because it’s the occasion you have. If I didn’t have a kid with autism, I’d be worried about trivial things too. They’re always trivial as they are your circumstance. So you’re doing the best you can. And if you’re not doing the best you can, find supports that will allow you to do that.

 

00;31;12;03 – 00;31;27;04

Katie

You have to take care of yourself. In addition to taking care of your child, you need therapy. If you need to ask your partner to step up to do something because you’re carrying the load, you need more help from your school. You deserve it. But you do have to ask.

 

00;31;27;06 – 00;31;41;04

Dr. Mona

Yeah. Katie, thank you so much for joining me. It means a lot. I really I learned a lot from you too. And I know all my listeners did. So I really appreciate you taking this time to record this with us and sharing your message with the world.

 

00;31;41;06 – 00;31;46;24

Katie

Oh, absolutely. Thank you for having me. I appreciate you giving me a platform to have families.

 

00;31;46;27 – 00;32;02;20

Dr. Mona

Thank you for tuning in for this week’s episode. As always, please leave a review, share this episode with a friend, share it on your social media. Make sure to follow me at PedsDocTalk on Instagram and subscribe to my YouTube channel, PedsDocTalk TV. We’ll talk to you soon.