Insights for Parents on Mental Health and Invisible Disabilities

Show Notes:

In this interview, Jami Kirkbride shares her insights and experiences as a parent of a child with invisible disabilities, particularly related to mental health challenges. The discussion revolves around the challenges parents face in helping others understand and support their children’s needs.

Jami emphasizes that invisible disabilities can be difficult to grasp for outsiders, leading to mislabeling or misunderstandings of a child’s behavior. These children may be wrongly perceived as undisciplined or defiant when, in reality, they are struggling to cope with their invisible disabilities.

She discusses various aspects of her journey, starting from early signs of her child’s challenges, such as needing structure and showing hyperactivity and impulsivity. As her child grew, they encountered issues with sensory processing difficulties, leading to meltdowns and overstimulation.

The conversation touches upon the importance of educating oneself about invisible disabilities and then sharing that knowledge with others, including extended family, teachers, coaches, and community members. Jami highlights the significance of using phrases like “My child is not giving me a hard time; they are having a hard time” to shift the narrative from judgment to understanding.

The interview underscores the value of open communication between parents, extended family, and other adults involved in the child’s life. Jami advises parents to create an “elevator speech” summarizing their child’s needs and fostering clarity in conveying those needs to others.

With the upcoming holiday season, Jami suggests having a family huddle to collaboratively plan for the holidays, involving the child in the decision-making process. She also recommends using a prepared letter to share with extended family members, encouraging them to understand the child’s challenges and offer support.

The interview provides valuable insights and practical advice for parents dealing with invisible disabilities, emphasizing the importance of awareness, communication, and collaboration to better support their children.

📣 Connect with Jami:

• WEBSITE: https://parentingwithpersonality.com
• INSTAGRAM: https://www.instagram.com/parentingwithpersonality/
• FACEBOOK:
  • Parenting With Personality Support Group: https://www.facebook.com/groups/1355086178331900
• PINTEREST:  https://www.pinterest.com/parentingwithpersonality/
• Behind the Behaviors: Understanding A Uniquely Wired Child
  • *FREE  Resource Link:  https://pwpersonality.kartra.com/page/jDR715

DISCLAIMER: The Water Prairie Chronicles is an informational podcast. The contents of this episode are for informational purposes only. Check with your doctor and/or counselor with questions specific to your own journey.

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

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Episode #83: Parenting with Purpose: Advocating for Children with Invisible Disabilities

Insights for Parents on Mental Health and Invisible Disabilities

(Recorded September 27, 2023)

Full Transcript of Interview:

Tonya: Are you a parent dealing with the challenges of raising children with invisible disabilities? Maybe your child is highly sensitive, emotional, intense, or exhibits challenging behaviors. Today I’m talking with Jami Kirkbride, a dedicated parent coach, speaker, and author who offers practical guidance for empowering parents.

With seven children of her own and a background in professional counseling, Jami brings valuable insights to help you navigate the unique journey of parenting. In this conversation, she’ll share her wisdom and relatable stories to equip you with the tools and strategies needed to foster meaningful connections with your children.

Stay tuned for a special free resource Jami has in store for you at the end of this interview. Jami, welcome to Water Prairie.

Jami: Thank you. I’m so glad to be here.

So I’ve been looking forward to this. Jami and I met months ago online and we’ve been corresponding at different times, but it’s just taken us some time to find a mutual time where we could sit down and talk.

So we’re, um, we’re looking forward to bringing you some, some information today. I think a lot of you are going to be able to connect with us. So, stay with us. But if you’ve been listening this season, you know that I’ve been playing the game of two truths and a lie with each of my guests and we do this upfront.

So Jami has agreed to play the game with us and she’s provided us with three Facts about herself. Your job as a listener is to decide which one is really a lie. And if you’re watching on YouTube, put your com in the comment below what your guess is. Otherwise, go to Instagram or Twitter, find the post that matches this, and write your comment there.

A week after this releases, I’ll come back and I’ll post the answers so that you can check your, your, your work. The schoolteacher in me has to, has to have a, have, have a, have a check at the end there.

I love it. This is a great idea.

But listen to the whole episode first, cause you might get some tips in there of what the answer is.

All right. So Jami, what are your facts that you brought?

You bet. Number one, I helped undress a body for an autopsy. Number two, I love to surf the waves when I’m able to get away. And number three, I have shot a semi-automatic gun.

So, listeners, look at these three, see what, see what you think, and um, remember what your guess is.

And after you finish listening to this, go and check on Instagram or Twitter and put your answer there.

Voice Over: Welcome to the Water Prairie Chronicles, a podcast created to encourage and support parents of special needs children. I’m Tonya Wallum, and I’m glad you’re here.

Today we’re going to be talking about invisible disabilities and how they can sometimes influence how other people see our children.

So Jami, can you tell me a little bit about your experience as far as parenting a child with invisible disabilities?

You bet. You know, I think one of the things that makes invisible disabilities so challenging is that when your child is struggling with them, you feel like they are painfully obvious.

But to other people, they just maybe, you know, slap on a mislabeled, you know, diagnosis, or maybe they’re just calling it a misbehavior. Maybe they just think your child is hyper. Maybe they think they’re unmannered. Maybe they think they’re undisciplined. So they’re labeled with a lot of different things, but their real issue, or their wiring, as I sometimes like to refer to it, isn’t being understood.

And so for that reason, people miss what it is that they’re seeing.

The, um… So, I listed a couple of things that might fall into that category. I know I missed some. Can you think of any more that, just for parents that are listening that may not know, is this really what I’m looking at or not?

You bet. You know, for our son, we started early because we had the idea that maybe, um, his personality started looking like it was maybe just strong-willed.

But then by the time he was in preschool, he seemed to really need a lot of structure. He didn’t always really like the structure, but he functioned best within the structure. And then as he got a little older, we were like, you know, parts of this feel like maybe a little bit of ADHD and unfocused and maybe hyper-focus on certain things, but not the right things.

And then as he started getting just a little bit older in school, we started seeing Some of that, um, restraint collapse where maybe he would function well at school while other people watched, but we were reporting that he was coming home and falling apart at night and he just couldn’t hold it together anymore.

He was trying so hard all day that by the time he came home, it felt like we were dealing with a different child than what they said he was doing at school. And it kind of made me feel like I was going nuts. And then the next step was that some of these behaviors started happening. At school, and then of course, at that stage, it was that he wasn’t behaving or that he was being defiant or that he was being disobedient or, you know, whatever people want to put on behaviors that we see.

But the problem is when we’re dealing with invisible disability, sometimes these behaviors are just the alerts. They’re like the red siren light that’s supposed to say something’s going on here. And so that’s what we started experiencing in school, is that a lot of what they were seeing, they were relating to bad behavior when we knew there was something more behind the behavior.

But I think sometimes too, um, the way that you spelled out the progression there, I’m picturing, you know, when, when they’re young, you’re just seeing some, some little things that, that you might notice, but no one else is noticing as they go through the elementary years. Um, they still have more support within their classroom.

A lot of the classes may have a teacher’s aid that’s in there. So they’re, they’re still able to kind of hold it together. But as you’re noticing these changes, I know in our family, we saw this too, as that support withdrew, it’s more pressure on the child now to figure it out on their own and to, to kind of hold it all together.

And we had the same thing. Um, and we had a counselor tell us once that we should be happy that. That the meltdown was at home because it meant that they were safe at home. If you’re a parent listening to this and you understand what we’re talking about then, you know The stress level at home gets higher and higher because everyone’s just exhausted now and we’ve spent a lot of time just re replaying what had happened at school If something did happen and trying to figure out from this young child’s point of view, what could he have done differently to make it better?

And I realized there was a disconnect in there that the child should not be the one trying to make it better. The adult should be the one that’s trying to help the child make it better. And, um, but at the point where, where we’re talking about with my son, at least it was, I couldn’t get it the other way.

So here 10 years of age. How to be the responsible party in the interactions that are happening at school and that’s unfair because that’s a lot of pressure on a child Even a teenager. It’s a lot.

Oh, yeah And you know, I think for us one of our big wake-up calls was that we really didn’t know much about sensory processing And as we started becoming more informed parents, we realized how our child was truly impacted by a lot of sensory processing difficulties.

And, you know, looking at him from the outside, he seemed very typical. He looked very normal. You know, he was like a little boy that was just busy, but if you ever really watched or dealt with him, there were just these things that didn’t always add up, you, it, it seemed like an exaggerated response or an avoidance or a resistance or, you know, it just didn’t always flow.

And as a mental health professional, I felt like I probably had a pulse on it sooner than maybe some parents would. But I still missed so much of it until I became informed about the sensory piece. And then I started realizing that some of the things that he was struggling through were things I would have never even imagined.

You know, he came home one day and was just insistent that the kids on the bus were mean to him. And I said, you know, help me understand. When you say the kids on the bus are mean to me, What does that sound like? What does that look like? What are they doing? Like, help me understand. Yeah, and he said, they ask me questions.

They ask me questions, and he was really worked up, and I said, well, tell me, what are some of the things they ask you? Well, they asked me things like, can I sit with you? And he was serious. He was very serious. But the problem was, he had a real sensory issue with space, with touch, with needing his own area and feeling unsafe if people were in that.

And I had to realize that if those were the kind of things that were putting his system into that fight or flight, His day probably felt really, really rough because those are interactions that happen so naturally at school and not for him. And so I think,

you know, you’re waiting in line, everything all day long,

right? And, you know, people ask you, can I, can I do this? Can I do that? If just a question felt threatening to him, so many pieces of his day had him overstimulated, had him overwhelmed, had him overloaded. And so we had to totally back up and talk about what is it that you feel when people ask a question. And what do you say when somebody asks you a question?

And what if you don’t want them to sit with you? How do you answer that? And we had to do a lot of role-play. Honestly, these are things that when you’re dealing with maybe neurotypical children, you never even think twice about. But when you’re working with invisible disabilities or neurodiverse brains, these are things we have to really back up the train and we have to realize they don’t even know how to label them.

What is going on in their body, let alone tell us what’s going on with their body and ask for what they need. And that’s typically what a lot of these children with invisible disabilities are facing. All of these adults in their environment are saying, just ask for what you need. Tell us what you need.

We can support you. We can help you. They don’t have a vocabulary for that quite often,

Right. So, I’m thinking, first of all, primarily listeners are probably having their kids in a public school setting or maybe a private school setting. So they have teachers that are there, but there’s also coaches that might be, if they’re involved in sports or some type of debate team or something like that, there are other adults that are involved with our kids lives and it’s beyond just the classroom.

You know, it might be a dance class or it might, it might be a church group, something like that. How can we help those other adults change that view of the child’s behavior being negative to realizing that maybe the child’s just having a hard time adjusting or having a hard time explaining this? How is, as parents, how can we communicate this to the other adults that are in our child’s life?

Yeah, that is a great question and it’s one I deal with a lot. I think number one is that we need to educate ourselves. And it’s important that we educate ourselves because the next step is that we need to share what we learn to educate others.

And as we take that risk to educate others and invite them into understanding. What invisible disabilities are about where, whether it’s ADHD or a mood disorder or some sort of, you know, other way that our child is wired, we invite them into understanding that. And then I think it’s important that we even use simple phrases like this.

And it’s one of my favorite. My child is not giving me a hard time. He is having a hard time. And I think when we start spreading that very important mantra. Others in their environment are going to say, you know what, there’s something to that. Because children will do well when they can do well. And if a child isn’t doing well, that’s our alarm that something needs addressed, whether it’s they need a skill, maybe they need us to teach something, maybe they need practice at something, maybe they even, we need to identify something.

And so when we look at behaviors as alerts, and we teach others in their environments, what those things can alert, then they start having eyes for different things as well. And so it requires Helping people suspend the judgment on the child or the behavior and instead starting to look at what is this child trying to tell me, what are they communicating?

Because all behavior is communication.

You know, as we’re talking here, you know, we both have sons, sons that we were talking about, but I was thinking through a situation where my daughter was in a program in high school and there was a girl in their group who had high anxiety, but the leader in the group didn’t understand that.

And I kept hearing things like, um, she’s, she’s just being, um, a drama queen and, um, and those, those are harmful things. You know, if you’re listening and you have a family member who may be, maybe they have a child who has a hard time easily, I’m just hoping that, that we’re getting through that there are ways that you can support that family.

Even if this isn’t your child that we’re talking about, maybe, maybe it’s a child on your son’s little league team, something like that. Um, and, and it may be that you can take what you’re hearing here and pass that on to the other parent. It’s kind of hard parent to parent to tell another parent what to do, but if you could at least maybe use some of the wording.

Um, when you’re talking to the parent without, you’re not passing judgment, you’re just, you know, saying, you know, Johnny’s really having a hard time today. Or um, you know, or maybe, maybe is, is there something I can do to help support Johnny right now? Um, those types of questions. The, um, yeah, so I, I, you know, going, going into the conversation, I was thinking of my son, but I’d forgotten that, uh, about her and, and I know my daughter seemed to, to rally around her because she, she could understand a little bit better what was happening, having had a brother who has similar types of hard days,

Right? You know, that reminds me of a situation where we were sitting in a movie theater and our son who has the invisible disabilities saw for the first time somebody else struggling in the same way that he did. And I will never forget this moment. It was like blinders were just suddenly taken off for him.

And I could see his wheels just kind of spinning. And when we got home, we were sitting at the table that night, and out of nowhere, he says, Is that how you guys feel when that happens with me? And it made me sad because for the first time, he had an awareness for something that was his struggle from the outside looking in.

And I said, you know what? I hope that you saw that that boy’s family came right alongside him and they helped him. They cared about him. They talked to him. They went out with him. And then when he was able, they came back in with him. I hope that you know that that’s how we try to help you. When you have those hard times, and I think that, you know, they’re coming into different awareness the same time that we as parents are coming into an awareness, and I think You know, when we start seeing things more clearly, we can help them see things clearly and the people in their environment see them clearly.

And that truly is when a lot of this mental health stigma is going to finally start dissolving. Yeah, and it takes these new and fresh perspectives. And I think as an informed parent, as an informed teacher, as an informed coach or community member, however, it is that you are impacting children’s lives, that is, that is where your power is, in the awareness and acceptance

Well the you know, the days of having to hide everything should be gone now. I don’t know that we’re there yet, but I think we’re getting closer to being there and I think there is more understanding and acceptance if, if the words are communicated, assumptions still happen, but if we can, can talk and have this open communications, I think it does help

that is an important piece though, because I think so many parents, are, are afraid of risking communicating about it.

You know, that was one of the reasons that I even started working on, you know, on this new quick guide was that people in my coaching program were saying, I don’t even know how to tell my extended family. I don’t know how to tell my own parents. I don’t know how, how to even tell. You know, my sisters or my siblings, like we just avoid even going to family things because our own family doesn’t get it.

They think that we’re just doing poor parenting or that our child’s just bad, or that we aren’t being consistent or giving discipline, you know? So that is such an important piece. And it is surprising to me how scary that feels to so many parents to even open those conversations. But I agree with you. Those conversations are key.

When I think too that as parents get more opportunities to share those conversations, I think there’s a strength that comes on the parent’s side. That the first, the first time having that conversation, it may be a family member at that point. It, it is intimidating because you don’t have all the answers yet.

You’re, you’re not the medical professional that’s coming in, but you do know that your child needs more support. And, and You’re not a bad parent, but we all, I think we all go through that phase of thinking, you know, how do I look on the outside? We had this on a, a few weeks ago, we had a similar conversation on this.

That, um, you know, you go into the grocery store and your child’s on the floor. You know, it, the first time it happens, it’s all about you because, you know, everyone’s looking, you know, it has nothing to do with you.

You’re like, wait a minute. This is the kid I was never going to have.

Do you go outside and threaten, threaten a punishment?

You know, you kind of have to go through that mindset. Change that. No, this is, this is okay. But, but little Johnny is in pain right now. Something’s happening that’s causing this and it probably is an overstimulation and going outside is the right answer just to get away from the situation.

I remember a situation, our son having the sensory stuff struggled to be outside.

He struggled with waiting. He struggled with the weather elements and we were outside at a track meet all day. I hadn’t done my very best parenting, so we were late getting lunch, so he was low on protein, and he had a massive meltdown in front of this crowd of people that were in the stands. And I remember thinking in that moment, He needs protein, and he needs a sensory tool, and I knew that crunchy tortilla chips were his sensory tool of choice.

And that the cheese would have some protein, better protein than anything else at the concession stand. And that I really needed to go and get him what he needed, but I will never forget just how I felt all eyes were on me as I’m rewarding This child with an invisible disability with a plate of nachos because he just had an Epic meltdown in front of the crowd which included insulting me and I know to outsiders looking in it looked as though This child just threw this massive fit and was mean and I rewarded him with chips And you have to learn to just kind of suspend that you’re gonna care what people think When you need to tend to the invisible disability issues, because they don’t make sense, it doesn’t always add up.

It rarely adds up. The math does not work out. But in that moment, I knew I needed to stretch beyond and give him the tools he needed to cope in the situation. And within minutes, we were able to, to get to a place where we could, you know, now let’s try again. Can you respectfully ask for what you need?

Okay. You need a break in the car. Let’s go take a break in the car. Let’s turn on the air conditioner. Let’s let you take your shoes off, you know, and tend to the needs. And again, this is why it’s so important that people in our children’s environments start understanding, what behaviors would we notice.

What would we see? What might it sound like? And what do we need to know in working with your child? You know, if you were going to sum it up into two sentences, what is important for other people to know? And I, I just shared this in my coaching group today. I said, you know, for those who have ever done any kind of selling or public speaking, they encourage you to have like your elevator.

Elevator pitch or elevators. I think we should all have one of those when it comes to summing up your child’s needs.

That’s a great point.

Simply because if you can say short and concise. What your child has going on and, and how you want others to perceive him or look at his issues, you sound like you have clarity and a parent that has clarity can go so much further than one.

That’s like, I don’t know. I mean, we kind of deal with, you know, so practice your elevator speech on what your child’s needs are, because I think that is how we become informed and how we pass on that ability. To understand and other people see their issues in a concise package, even though we know there’s so much more to it.

How would you just slim up that package to be like, you know what, just so you know, this is what is great about them. And you might, you might sense this or feel this, but this is who they are and you know what, they’re created with a great purpose and it’s going to come in handy. You know.

So we’ve kind of touched on this, but I’m going to throw it back out there again. The holidays are coming up, so family gatherings are going to be happening. Any words of advice for our parents who are going to be with the extended family, with the extra sugars, the extra excitement of everything else? Um, any tips for them as, between communication with the extended family, but also, um, I don’t know, maybe you have some tips on… Helping to prevent the meltdowns, if they could think ahead on that too.

That’s right. You know what? I have a couple great ideas that I’d love to share. First of all, I encourage every family heading into the holidays to have what I call a huddle. A family huddle. Talk about what is it your child may be struggling with, with the holidays coming?

What is it that they really want to do during the holidays? Do they have any concerns about the holidays? Where do you plan to be for the holidays? And get a plan. Collaboratively figure out what your holidays are going to look like. And when they get some say in that plan, there’s more buy-in. And so you can eliminate some of these meltdowns by just using a collaborative problem-solving approach.

And when it comes to dealing with that extended family, I think number one, it takes being willing to risk it. It takes being a bit vulnerable. And it’s okay, like, some parents are like, you know what, my plate is too full. I am managing with my child’s consistent meltdowns, and I don’t have extra energy to recruit others.

To understand and you know what? I get it. Sometimes you need to just know your boundaries and be like that conversation is for later But other times that risk can really bring some change within the extended family And that’s one reason I love this guide because in the guide that you’re going to mention later There is a letter that I have already written that parents could Honestly, just print out and hand to extended family, and it basically encourages them.

You know what? You are a person in our child’s life who has impact and influence. And so we just want you to understand that this is kind of what’s going on and your support means a lot. And this is how you can help. And so if you don’t even want to broach the conversation. Send the letter because you never know what doors may be opened and sometimes families just need to hear it from an outside source. And I am so willing to be that outside source.

Let’s go ahead and talk about this resource because I know you’ve put a lot of work into this and I want our listeners to hear about it. So, um, so tell us what is it, what’s included in it. How, how, how can they get it?

I am so excited to share about it. And honestly, this is the first time I’ve been able to share it with somebody.

So I’m super excited. It’s called behind the behaviors, understanding a uniquely wired child. And basically, it is, I think, 14 pages of information and I have made some easy-to-read graphs that just kind of map out what are some of these invisible disabilities as it relates to mental health issues. What are some that we see more often?

And just kind of a short summary of what is it. And then a short little summary of how does this impact my child? And another short summary of how can you work well with my child. And then I divided all of those same issues out on a different graph. And I put at school, at home, in the community, on teams, or with, you know, in social settings.

And if you were going to sum up just one thing that they need to keep in mind when working with your child. What might that be? And then I moved into what are some different resources. You know, some books that you might be able to refer your family to or provide for your family. Sometimes they just…

They just need the book put in their hand, you know We have found a couple of resources that worked that well And then as I mentioned that letter that was truly written So that you could just print it out and give it to a teacher give it to a coach give it to extended family And if you don’t even know what to say, I hope that I have captured in that letter Something that offers you support and offers them the ability to say, you know what, maybe there’s something to this.

And I think that, honestly, when I went back and I read the letter, I just cried. I just cried because I remember being in that position and just wanting so desperately for my people to get it. And my people did get it. And some of what I put in that letter is… You know, like what helped them get there. And so I’m just super excited because I feel like this is finally a resource that taps on the mental health issues and why it’s so difficult to get teachers and coaches and community and extended family all on the same page.

And I think there is such power in getting people on your same page because you need support. Your child needs support and you don’t have the extra energy to convince anyone. You just need them to have the information and be one step closer to being that support.

Excellent. And how can our listeners get, get their hands on this, this resource?

We’re going to provide a link for it. And if you go to that page, they, you just. Put your name and email in and it’ll be sent right to your inbox. You can also get it if you go to Parenting with Personality on Instagram. You can also find it if you go to my website, parentingwithpersonality.com. And I also have a Facebook, uh, parent support group. And if you come into that group, you can access that resource there as well.

Excellent. So we’ll, we’ll put all of those links in, in the show notes. So if you’re listening or if you’re watching the video, check, check for the notes. And, um, just to clarify, so this is a free resource, there’s no charge for it?

Absolutely. No, it is a free resource. I am just so excited to get it into the hands of parents that have just needed something to make that conversation easier. I just, if you want to share the link with other people, share it with other people. But I would just love to be able to get it in the hands of more and more parents needing support.

I love being able to offer that. And um, and I know a lot will find value with that. Best way to contact you. Is that through your website?

Yes. On https://parentingwithpersonality.com or on Facebook, Instagram, I’m even over on Pinterest. So in any of those places, and I welcome emails. So if you look over the resource and you want to ask questions, I have my email address in there.

I also have a place where you can just set up a call and set up a free call where we can just talk about what it is that you may be struggling with. So that all those links are in that resource as well.

Well, Jami, thank you. Thank you for spending some time with me today and talking through this. I think you have so much value to add to our families that anything we can get from you is great, but this resource just sounds like a fantastic guide to be able to have out there.

So, um, if you are listening and you do download this and check it out, I’d love to hear your thoughts on it too. So feel free to send us a note or to leave a comment on it. And as she said, feel free to pass it on to other people too. So, um, so Jami, thank you. I appreciate you coming with us today.

You bet. Thank you so much for having me. Anytime. Call me anytime.

Voice Over: Thanks for joining us today. I hope you found inspiration, wisdom, and practical guidance to better support your children with invisible disabilities and mental health challenges. Jami’s insights have been invaluable, and I’m grateful for her time and expertise.

If you’d like to show your support for the Water Prairie Chronicles and help us continue to bring you more content like this, Visit https://buymeacoffee.com/waterprairie. Your support helps to keep the conversations flowing and provide resources for special needs parents. Don’t forget to hit that like button, share this video with fellow parents and subscribe to our channel.

And if you have any questions or topics you’d like to see us exploring in future episodes, please drop us a note in the comments below. Thanks for being a part of this community and I’ll see you next week.