007 - Can it be more then a tantrum - Talking about diagnosis

Parenting the Intensity · Aug 15, 2023

Transcript

Welcome! When you've tried everything and it works with your kids, it might be time to wonder if it can be more than a normal tantrumming kid you're having trouble dealing with, and that your kid might need a diagnosis. I know that might sound scary for some of you. Don't freak out just yet. Welcome to Parenting the Intensity, where we'll talk all about how we can drop the general parenting advice that doesn't work with our emotionally intense kids anyway, and let go of the unrealistic expectations society puts on us as parents. Together, we'll find solutions and ideas that work for you and your kids. Chances are, deep down, you know what they need. But you need a little encouragement to keep going on harder days and permission to do things differently and help you fully trust that you already are a wonderful parent to your exceptional but challenging kids. Your kids might be needing more than just another parenting technique, another approach. Because you're a good parent, yes, you are, even if you don't feel like it or don't believe it right now. You are, because you're here, I know. You would not be here if you weren't. And let's be honest, bad parents, it's not really a thing. Anyway, that's another conversation. But you've read all the things and tried them all. So it's not because you're not doing the right thing. So maybe there's something more going on. And maybe you're scared of that possibility. And that's completely normal. So let's take the bull by horns. Is that an expression in English?

I don't know. And look at it clearly. What does it mean to get a diagnosis? And what happens if your kid gets one or not? There's that possibility too that even if you have an assessment, your kids might not get one. And often when we push the diagnosis out, it's because we're afraid to get the answer. We're afraid that what we think might be true. But that's a bit like anxiety. Not knowing in general is better than knowing.

No, sorry. Knowing is better than not knowing. I worked for a few years in a program where there was like, it was in a pediatric read adaptation center. And there was two sub programs. One with parents of kids with a very specific diagnosis. There was like three levels. And at two years old, they were told exactly what their kids would look like at five, 10, 12, their entire life. And for some of them, that meant their kids would never walk, never talk, never eat by themselves. Yeah. So for some, it was a very, very, very bad diagnosis.

Let's be honest. Like it's not a good pronostic, but it was a very clear diagnosis. The other half of that program were kids with developmental delays. For most of them, they didn't add a diagnosis. And for some that did, it was a rare disease for most part, or was ex-premies. Like very, very early preemies. Kids that were born between weeks 24 and 32, that had impacts from being premature. Doesn't mean every preemie does, but those that were in that program did. And in all those cases, even those with the diagnosis, because it was rare disease, they didn't add a clear idea of what their kid will look like at six months in a year, in two years, let alone 10 years. That was a complete, like there was no way of knowing. And what I witnessed, and that was surprising to me at first, was that those people with kids that were for the most part working, talking, and eating, were experiencing that with much more trouble. They were having a lot of frustration, sadness, depression, much more than most, and of course it's most, it's not everyone, but most of the parents in the other program that were, that basically had like objectively worse diagnosis for their kids, but they had clear answers. And that's what I noticed, that the clear answer, even though it was not a good answer, was still easier to deal with. And that's most likely because of grief. Because when you have the answer, when you know what you're expecting, you can grieve. You can grieve what will not be. When you don't know, you have no clue, you're wondering, then you cannot grieve. Or you can way more utterly grieve. So yes, getting a diagnosis might mean what you think is happening when your kid is true, and it might be permanent, and it might not let you, and you might be a parent of a different kid forever. But once you know that, you can grieve the normal parent or the normal kids that you want to have, you won't be. You might not know exactly what your kid is going to be able to do in 10 years, because some diagnosis, I would say most diagnosis of kids, like emotionally intense kids, it won't be really clear cut diagnosis.

And I'll talk about that, you might get one now and another one in a few years. But still getting a diagnosis can be helpful for that. It's not magic, though, and I'm going to address that too. And I'm not saying you need to get a diagnosis for your kids, you're the only one who knows. But in general, even if it's scary, knowing is better than not knowing. And the reason why it's because it's bringing clarity. And to what's happening. But yeah, it does make things permanent and more real, which is scary. But the thing, the one thing that I've always remember, like, our parents remember when they were getting diagnosis, and I sit with many a parent while they were receiving different kind of diagnosis for the kids. It's that a diagnosis doesn't change the kid. It put words on what's happening. That's it. The kids is not going to change because it gets a diagnosis like they're they're not changing. They're just getting a label.

Yeah, that's I dress. Because labels can be a problem. But what we are getting is information about what's potentially going on with the kids. Because diagnosis aren't perfect, which I'm going to touch on. But that's the number one thing to focus on. If you're considering a diagnosis is that diagnosis don't change kids. Diagnosis give some new information and answers. The kids is the kid. It won't become more permanent because you get a diagnosis. If it's permanent, it's going to be permanent anyway. So is it necessary to get a diagnosis? No, it's not. You cannot get a diagnosis. You can always choose not to. For many reasons, in most, most occasions, most situations, it's more helpful than not. But it always depends where you live.

It depends the services you can get. It depends the level of stigma that can come with some diagnosis to where you are. Because yes, diagnosis can have very negative labels and have misleading labels. Lots of things. And one of like, you can have some diagnosis that can be seen as something which is very different than the reality. And autism is one of those example. Parents, like the social vision of autism is something that is very, very far from the reality of autism. And ADHD is something that has a completely, I would say, opposite effect. Like when you get the, ADHD is almost like anybody that moves as ADHD in those days. And it seemed like it's not important. It's not impactful. Most places don't give services to kids with ADHD or parents of kids with ADHD.

I'm taking school and public services. But it can have a very, very important impact. Just like if you look up the numbers of people with undiagnosed or diagnosed ADHD in the presence, it's horrible. Like the number is far higher than the general population. So there is a problem somewhere. So yes, those labels comes with negative vision, comes with people that will disbelieve that your kids has that because they don't see it as what it really is. So you definitely need to weigh in the pros and cons. So that you all, you're, I want to say you're the only one who knows in your reality, in your social, like where you live, if the negative label, negativity of the labels is higher than the positive impact. But sometimes we just don't know that because before we experience it, we don't really know what negative is associated with the label, with the diagnosis. So there's no perfect answer. And that's why I'm never going to tell you just go to get the diagnosis. It's necessary because it really depends. But in general, is it helpful? I would say often, often it's helpful. One, because in most places having a diagnosis will give you access to some services that you won't have access to if you don't have a diagnosis, which is an entire problem in and of itself. I'm not going to dive into today, but yeah, in most places that will have an impact on the kind of service you can have access to.

I'm sorry if you hear my daughter playing in the background. It will also help reframe expectations. When we have a child that we don't know what's going on with, we expect that child to develop in a normal, quote unquote, because normal is not a thing, really, but in a normal way, in a way that doctors and developmental specialists will tell you a child is supposed to develop. It's doing some specific things at specific ages. But when we have a diagnosis, we can adapt those expectations. And often with emotionally intense kids, they might seem like their age, but their emotional state might be a different age than what they really are for a different reason. And so reframing that will have a very useful for us, at least as parents, and we can explain to others around us more easily also when we have a diagnosis. It can also help us what to look for, what kind of resource, what tools When you know that you have a kid with ADHD, you can look up ADHD. It's much easier. Will everything about ADHD fit? Your reality, your kid? No, most probably it won't because there's no one solution, but it gives you some... It reduces what you're going to look for, what you're going to research because there's so many information out there about parenting. You cannot look them all.

It's just not possible. So it might help you narrow down your research. So that's another helpful aspect. And if you're here, I'm guessing you're researching things for your kids. So having that line and focus on what to search for, what to look for, what to look for, line and focus on what to search for, what you can look up is helpful. I would say it's also usually validating for us as parents and can help shed a lot of the guilt that we have around not parenting our kids the right way with big quotes. Like we feel we're not doing the right thing. We feel like we're failing, but then we get a diagnosis and that can be very freeing for parents and for the kids themselves. Depends on the age, of course, they might not get it, but knowing that you're not the problem, you are different. And that's why you're experiencing life differently than what you quote unquote should be. So yeah, I would say that might be the biggest positive impact of a diagnosis, is relieving some of the guilt and adapting, like reframing the expectation for the kids, which is kind of the same thing. So it validates that we're not bad parents.

I can say that all day, but it won't change how you feel about that. The diagnosis might. So that's another the diagnosis might. It's also helpful to explain to others, as I touched a little bit, like when we have a diagnosis, we can explain and people sadly trust us more than when we just talk about our experience. Because having that diagnosis gives like backs us up, especially schools, but even just family members or friends. It's not like it's not using the diagnosis as an excuse. It's using it as an explanation for what's happening and for why some things don't work with our kids. So that might be helpful to get diagnosis. Is it, would it be better if people would just trust us as parents? Yeah, it would definitely would, but it's not the case sadly. So sometimes that's helpful. So yeah, so I would say like those are the positive of a diagnosis service, looking for the right information and reframing expectation, validating us and explaining to others. Because really the most important part of it all really is helping us and our kids understand what's happening. I'm always talking about detective work and a diagnosis is a big part of the answer as in our detective work, because it really helps narrow down where we can look for answers. The other thing though is if we get a diagnosis, or at least if we get an assessment, then what happens? First, you might not get a diagnosis from an assessment, or you might get a completely different diagnosis than what you were expecting. That did happen for one of my child. We were going in for something and we got something else.

It made sense when we did, but doesn't mean I was expecting it. So there's that aspect. And the other thing is that, and I should have precipitated, but you might be waiting for a diagnosis right now or an assessment right now. You might not have access to it for a different reason. You might think your kids need one, but your doctors don't want to refer you. You might have a long wait list where you live, or you might need to go to private, but it's too pricey. There's many reasons that you might not be able to get a diagnosis. That can be very hard. It doesn't mean you cannot find answers. The detective work I'm talking about can totally be done even if you don't have a diagnosis. You can still find the answers. You can decide by yourself that your kids might have this or that and use those techniques, even if the kids don't have a diagnosis. And yes, you might not be able to get the services and understanding of people around you, but you as a parent can say, I think my kids has that.

I will use tools with that in mind. I mean, if it works, it works. We don't care if the kid has a diagnosis or not. So that's also a big caveat that if you cannot get a diagnosis for any reasons, doesn't mean you're stuck. But then if you get an assessment, you might not get the diagnosis you were expecting or not get a diagnosis at all. And will the diagnosis solve what's going on with your kids? No, no. The diagnosis is just a tool. It's just helpful, but it's not a solution in itself. It might give you access to some services or programs. Will those be exactly what you need and an answer to your kids? I hope so. It's not always the case. And I want to stretch again that you're the one who knows best. And if those programs and services don't fit your needs or your kids needs, you're okay. It's okay to say no. If there's long wait list, I always encourage to try and stay on those wait lists even if you don't need them now. You might need them later. So if you can just stay on the list so you don't close the door completely, just check if you can postpone the service because we never know things change with kids.

Shocker, I know. So yeah, you might get some answers. You got methanol solution. It might help to alleviate everything and things will go good and well. And I'm really happy if that's happening to you. But often not the case. It's often just a step. It's a first step. It's not the first probably, but it's a step in the process. It's not an answer. It's not a solution in itself. And sometimes, even if you think you know what's going on and you're like putting the brake on getting a diagnosis, and then you get it, will that mean you stop not wanting that to happen? No, that's called denial. And it's just part of the grieving process. You might not be ready to jump right in and be ready to jump right in and learn all the things about what your kid has. And some parents will, and it's also their mechanism, but some parents will break and wait and not be able to confront that for a little while. And it's okay. It can take a little bit before you're able to do that. As long as it's not negatively affecting your child.

I mean, there's no arm in that. I had parents in denial of the diagnosis of their kids for basically forever. And that's okay. As long as they're doing everything that their kids need, even if they don't believe the pronostics, it's okay. The kids just need parents that love them for who they are and support them for who they are. So yeah, so that's like, you might still be in denial for a while and give yourself that permission. You're grieving. And sometimes you'll get the diagnosis and it won't fit. So again, that happened to us. I got one and it was like, yeah, it does explain some of what's happening, but really not all. And then we got another one a few months later and that one made sense. And that one explained everything since birth, basically. But you might never get there. And I have still some kids with diagnosis that I'm like, yeah, it works, but I think there's something else. And as I said, I'm not going back and having them evaluate again. I know it's not quite right. And I know what it might be that I didn't get a diagnosis and I'm just using those tools because it works. You don't necessarily need the diagnosis to use those tools. Will it mean that you won't get some services? Yes, probably. But you as a parent can still use the tools related to a diagnosis that you don't have for your kids. There's no arm in that. I'm so glad you joined me today and took that time out of your intense life to focus on finding a new way to parent that works for you and your kids. To get the episodes as soon as they drop, make sure to subscribe to the podcast and please left a rating and review so other parents can find it too.

Also check out all the free resources on my website at familymoments.ca so you can take action on what's the most important for you right now. And take a deep breath, keep going. We're all in this together. you