The Science of Parenting

Parenting Children with Special Needs | Bonus

May 11, 2021 Iowa State University Extension and Outreach
The Science of Parenting
Parenting Children with Special Needs | Bonus
Show Notes Transcript

Children with special needs often achieve skills and milestones later than others. Listen in as Lori and Mackenzie offer support and ideas for parents of children with different abilities.

Send us an email: parenting@iastate.edu.
Find us on Facebook or Twitter: @scienceofparent.

This institution is an equal opportunity provider. For the full non-discrimination statement or accommodation inquiries, go to www.extension.iastate.edu/diversity/ext

Mackenzie Johnson:

Hey, everybody, it's Mackenzie Johnson and Lori Korthals here from The Science of Parenting team. This season, we have been talking a lot about the research behind typically developing kids and child development. But we want to slow down for a minute. And we want to talk a little about the reality of having a child who may not be meeting milestones at the rate that we discuss. So we're fortunate we have a little bit of experience and expertise here on our team. And so, Lori, will you just tell us a little about your own experience?

Lori Korthals:

I will. And this isn't an episode that we actually had planned. But as we were doing the episodes, I just kept saying to myself, but what about me, because I do have a child that didn't meet those milestones. And along the way, we found out that she does have a diagnosable disability. And so each episode, I kept thinking about my two children that were meeting the milestones, and the child that didn't meet those milestones. And I thought, I want to talk to these parents who might have some of these same feelings about what happens when our child doesn't meet those milestones. So here we are, right?

Mackenzie Johnson:

I mean, you know, we always talk about balancing research and reality. And we've been talking about a lot of the research. You know, I'm a parent of two typically developing kids, and so my reality can look a little different. And so I just, yeah, we want to share that reality that looks different for everybody.

Lori Korthals:

Exactly. And I did also check with my child to make sure that she was okay with me sharing. And so you know, she's 21 now, and she's very open about the abilities that she has and what she can do and her experiences along the way. And so I think that we have been sharing a little bit more about our journey together. So alright, you ask me any questions you have?

Mackenzie Johnson:

Okay, well, I do a few. So one, can you just give us you know, just like a really quick rundown of kind of what your experience has been generally of a parent of a child with special needs?

Lori Korthals:

Sure absolutely, and I think that one thing to mention is that all abilities, disabilities, different abilities are unique. And so my experience with a particular disability is not going to be the same experience across the board. And so what I really want to get to is those feelings that I had as a parent, those questions that I had as a parent, that might be universal to when our children don't reach certain milestones. So not specifically talking about a disability, but more about those questions and feelings and thoughts I had when I realized that my child wasn't meeting those milestones. And that was kind of early on, you know, as an infant and a toddler. So that second episode, where we talked about infant milestones, I began to question, hmm, you know, she's not rolling over yet. She's not starting to crawl, she's not sitting up. And I would ask other people. Gosh, you know, I'm an early childhood background studied, you know, went to college to learn about early childhood. And so I had these resources at my fingertips back in the early 2000s. And I kept looking at them and thinking, Okay, am I just being, you know, an overprotective early childhood mom because my second child isn't meeting the same milestones as my first child. Or should I really be asking professionals these questions, and that was a huge struggle. And so, you know, as she continued to not meet milestones through her toddler years, I kept asking questions. And I would have people say to me, oh, Lori, you know, she's just different from your first child, because her delays weren't so obviously significant. There was just something and my mom's gut kept saying, hmm, and I kept wishing she would do a certain milestone. I wish you would walk. Do you walk yet? Can you walk yet? We practice walking? Oh, if she hated practicing walking. And so those questions came up right away but I just couldn't put my finger on it. It was early 2000. I didn't feel like I had all the resources at my fingertips that we have now. And it was also I wasn't confident in my ability and my parenting ability. My children were two and a half and you know, a newborn or three and just barely one. And so I just was questioning a lot. Lots of questions.

Mackenzie Johnson:

Definitely, you know, and so it sounds like there was some stuff you observed. You know what, a lot of times we use that term like red flags. You know, some stuff like that, and some well intended people, right, the intention was to comfort you. But how that played out for you. Go ahead.

Lori Korthals:

It wasn't, you're right. They definitely were well intentioned. And they were in my professional field of early childhood. And so they would look at their rules. And the rule said, if a child isn't doing x by x, then we have a conversation. And so, you know, she just wasn't quite to that magic x.

Mackenzie Johnson:

Yes. Yes.

Lori Korthals:

Even though my gut was saying, something's not right. Something's not right.

Mackenzie Johnson:

Yeah. And so you did, using those skills of observation. And yeah, you had more knowledge than maybe average Joe, like average parents, but still had those concerns, but weren't sure. And so who did you ask, how did you move forward? You know, what kind of resources were you able to utilize?

Lori Korthals:

I did a lot of asking of my peers. Like I said, I do have an early childhood background, but those people were working in the school district. So the public school district that was closest to me, there is a program in every state that reaches out to families who have children younger than school age. So it might be called a birth to three program, or it might be called an early childhood program. But the school district has that information about how do we help parents who have questions about their child who's younger than school age, and in most cases, it's zero to age three. The community public health department might be able to help parents find that resource in their community. You know, now we have great searchable engines on the internet. And so you know, it's just that idea that if your child is below the age of three, it's a different resource than the school district, but the school district will be able to help you find it.

Mackenzie Johnson:

Yes, that they'll know, you know, it's maybe not them, you know, offering the services and help but that they'll know who is.

Lori Korthals:

Correct. And your family doctor, your family health care provider, they also should be able to help you find that resource. And again, ask lots of questions. Keep asking if that if that inner mom voice, inner dad voice, inner parent voice, you're the caregiver of that child. You're the childcare provider. If that inner voice is saying I have questions, I have questions. I have questions. Then keep asking the questions, keep asking.

Mackenzie Johnson:

Well and we always say we believe as parents that we're the experts, that we're the experts on our kids. And we believe that about our listeners, right, that like you know your kids. Yeah, like you said, your mom gud or your parent gut. Yes. Keep asking and keep seeking help.

Lori Korthals:

Yes. And when we started to do the episode on school age, or that middle and late childhood, that became a really big aha moment for me that yes, my child had identified delays, I did find the Birth to Three program in my area, I did have her receive some services. She got to have some speech therapy, she got to have some physical therapy with her walking and her gross motor, large muscles. She even got to have some occupational therapy, which is kind of those self help skills of eating, helping yourself get dressed. And so when we got to the school age, where in our episode, we talk a lot about mastery. Oh, those parent feelings of, did i do enough for her as an toddler, as an infant, as a preschooler? Because now she's really struggling with that mastery of some of those things. She's struggling with social skills, with friend groups, with, you know, how to get involved, where to belong. Oh, the mom guilt, the parent guilt, the feelings of, did I ask enough questions? Did I get her enough help? really began to surface and then it became more pronounced to others as well. Why doesn't she fit into those friend groups as well? Why doesn't she want to play with my child? Why doesn't she understand those rules of engagement when it comes to playing together? You know, that's when I began to really be very self conscious about the things I was doing for her, with her. I began to explain to others about her temperament at that time was what I was really relying on, because I still didn't have a name for what was going on. There wasn't an identified diagnosis at that time. And so the idea that, okay, I have to help her by explaining her temperament to others, was what I really relied on at that time.

Mackenzie Johnson:

Absolutely. And as I'm hearing you describe this, it's something similar that with like a family friend that we've had, the passage of time. You talk about having questions, like as an infant, and how much time has passed where you still don't have a clear answer. It's just really jumping out at me that like, that's a lot of time as a parent to spend, I don't want to say in turmoil, but like, like wondering and doubting and questioning

Lori Korthals:

It's a good word term. Turmoil is a good word. You know, this is the science of parenting. And I think as we've talked about the child's milestones, there's been this nudge in me that says, but tell them how it felt as a parent, but tell him how it felt. The doubt, the research says this, but the reality of my parental doubt was this. The reality of my parental questioning was this. And so, yes, as the delays, as the disabilities become more obvious to others, because your child is now out in public more, they're out in school more. There's a lot more that you're internally turmoiling about.

Mackenzie Johnson:

Yes, yes. Well, yeah, you make a great point. Like, we're the science of parenting, and I feel like so often we talk about the experience of our children with special needs, and of all the things that go into taking care of that, and meeting those demands, and all those things of, you know, like taking care of our kids. But you're a whole person yourself. As a parent, it's not like, yeah, you're having an experience of supporting a child with special needs. And you're a whole person with feelings and experiences and knowledge and temperament, and of all it.

Lori Korthals:

Right. When we were doing season two, and we were talking about, you know, the superpowers of parenting. I wasn't sure how to approach the idea of the superpowers of parenting a child with special needs. Yes, we hadn't provided all that background about milestones, but you are a superpower when it comes to your child's advocate. And going back to season two, and listening to those episodes, if you have a child with different abilities is super important. Because those episodes really allowed me to say, Hey, you know what, those feelings I had were valid. Those needs I had as a parent during that time and still continuing. I know, even I said, she's 21. And even last week, I was reaching out to you asking you to remind me of my skills as a parent, because I was having a moment regarding doubt and guilt and concern over, am I doing a good enough job as the parent of a child with special needs? And so it is, it's a lifelong journey, right?

Mackenzie Johnson:

Yes. And I think of you bringing up this season two content that we talked about, like self care, and the parenting load and sharing that load and all of those things. I'm like, there's an extra category. And so many of those ways when it comes to parenting a child with special needs in terms of the parenting load, right? Navigating appointments and therapy and the advocacy. Having to have these tough conversations. And I'm a person who doesn't like conflict, and so tapping into those self care superpowers, for sure. And yeah, so is there any, I guess, words of wisdom and advice? I mean, some people might say you're on the other side, right. Like you have a child who is a young adult.

Lori Korthals:

I'm gonna have to start to say I have two children launched in our interview, in our introduction. Yes, I'm going to have to change my intro. So I often reflect on the meetings that we've had with the school district, my co-parent and I, the conversations we've had with her support persons, with our friends, with our family. There are, you know, articles about her specific disability that I keep at my fingertips to share with others, to share with her teachers, to share with the the people who have befriended her, right, because social relationships happen to be difficult with her disability. And so those types of resources, I have felt I've needed to be her advocate, her voice. And what I reflect on is, I have an early childhood background, like I have this educational background, and I struggle. I have struggled. I have turmoil. I have doubt. I can't imagine what it feels like to be a parent who doesn't have that in their back pocket. And so I reach out to all those parents as much as I can personally and even through this venue to say, you can do this, but you can't do it alone. And I think I tried for so long to do it alone because I thought I had to. And about five months ago, my child is 21, and five months ago, I had a professional say to me, why did you try to do it alone? And I said, I don't have an answer for that. And she said, as you share your message, because I know you are. As you share your message, could you maybe make that be the number one rule? Okay, yes. You don't have to do this alone. I didn't realize there were so many people, places, supports that I did have. And it was my own guilt I think that kept me from reaching out. And so I would encourage you, you know, to reach out and be brave enough, somehow, even if it's to just email us at parenting@iastate.edu and say, I feel alone, you know. I'm committed to helping people find resources. I can't be that resource for everyone. But I'll help find resources so that you don't have to go through this alone. And, you know, you need that inner circle of people that will tell you no, you ain't doing this alone. You were that person for me last week.

Mackenzie Johnson:

We've been able to toss that ball back and forth a few times to support each other in this parenting journey.

Lori Korthals:

Yeah. So yeah, I think that's our message. Yes, that's our message, is no matter if your child is reaching milestones when they should or when you think they should and when they don't. You don't have to parent alone. You don't have to parent alone. There are lots and lots of places, people and things who are willing to help you parent together.

Mackenzie Johnson:

Yeah, we're fortunate in Iowa to have some of the resources that we do have to tap into. And so yes, if you email us, we'd love to connect you, especially if you're in Iowa, with some of the supports that we know are available out there for sure. And so yeah, this was just kind of a little bonus, I guess you could say, a little reality. We didn't feel like it was fair, I should say Lori really brought it to light, because credit where it's due, brought to light that not every parent has the same reality related to these milestones. And whether our kids are typical, typically developing, a little late, or maybe delayed, you know that there's a difference and so that everyone has a different reality. And we kind of chose not to take a research appr ach. You know, usually we do the research approach but we kn w every diagnosis is differ nt. And there can be research on many diagnoses, but chose to kind of look at this reality that we have here. So thank again, Lori.

Lori Korthals:

You're welcome.

Mackenzie Johnson:

So please do come along with us as we continue through this season on development, but come along with us as we tackle the ups and downs, the ins and outs, and the research and reality all around The Science of Parenting.

Anthony Santiago:

The Science of Parenting is hosted by Lori Korthals and Mackenzie Johnson, produced by Mackenzie DeJong, with research and writing by Barbara Dunn Swanson. Send in questions and comments to parenting@iastate.edu and connect with us on Facebook and Twitter. This institution is an equal opportunity provider. For the full non-discrimination statement or accommodation inquiries go to www.extension@iastate.edu/d versity/ext.