Navigating your child’s diagnosis: Self-care tips for parents

When a child is diagnosed with a learning and thinking difference, their parents often focus all their energy on helping. Like advocating for their child, or figuring out what support is needed. With so much to juggle, it's easy for parents to lose sight of their own mental well-being.

In this episode, Julian talks with Dr. Monica Johnson. Dr. Johnson, also known as “Dr. J,” is a psychologist and the host of Understood.org’s ADHD and podcast. Listen as Dr. J breaks down emotions parents may experience after receiving their child’s diagnosis. And get her advice on how to set boundaries and make time for self-care while still supporting your child.

We love to hear from our listeners. Email us at opportunitygap@understood.org.

• Parental burnout? What to do before you lose it

• Guided meditation for stressed parents

• CHADD

• LD OnLine

(01:20) Common emotions parents experience after their child’s diagnosis

(03:52) How parents can balance self-care and supporting their child

(04:10) What self-care can look like for parents

Julian: Receiving a child's learning disability diagnosis is a moment filled with uncertainty and overwhelming emotions. Parents often dive headfirst into advocating for their child's needs and wellbeing. But what happens when they neglect their own mental health in the process?

Welcome to the "Opportunity Gap." I am your host, Julian. I'm super excited about today's show because we're talking about why it's important for parents and parenting adults, that's us, to prioritize their own wellbeing while navigating the challenges of raising a child with a learning or thinking difference. Today, we are joined by Dr. Monica Johnson, AKA Dr. J. Monica Johnson is a clinical psychologist and owner of Kind Mind Psychology. She is also a fellow host of an Understood.org podcast. Listeners, it is dope, you gotta check it out. It is called "ADHD and." Dr. J, what's going on?

Dr. J: Thank you so much for having me. I'm super excited to be here today.

Julian: All right, so let's get into this. First question, what are some common reactions that parents might experience after they receive the diagnosis that their child has a learning disability?

Dr. J: There can actually be a broad range of emotional reactions and oftentimes the feelings are complex and they can evolve over time. For example, it's not uncommon for people to kind of have like a shock or denial kind of reaction of like, you know, some parents might question the validity of the diagnosis or be shocked when they receive the diagnosis because maybe they feel bad about being unaware. That their child was struggling. So, that leads into another one, which is also like guilt and like blaming yourself of how could I let this slip? How could I not notice?

There's also can be a lot of grief and sadness because you may have had certain ideas or expectations about what your child was gonna be capable of doing, and now you have to like modify those expectations or at least be prepared to provide support in ways that you didn't anticipate initially. Other things may also be kind of like anger and frustration. Sometimes people get upset because they may feel frustrated with the education system or teachers or professionals, because maybe they've been trying to say like something's going on, and it took some time to get a diagnosis.

And I guess the last thing I'll mention is like fear and anxiety. You know, now you may have more like worry about your child's like future. You're anxious about how the learning disability can impact their academic success, their self-esteem, and in some situations, their ability to like have an independent life.

Julian: All these big emotions, if they're not addressed, what happens to the dynamic in the family?

Dr. J: The first thing I'll mention, and this will probably come up a few times, is you're going to see like increased parental stress, and that increased stress can lead to burnout. I've had a lot of parents talk to me about decision fatigue. There's all these options presented, and they're trying to choose the best one, and they just feel overwhelmed with that. Parents often start neglecting their own self-care as well, because you're focused so much on the needs of the children that you stop taking care of yourself.

If you have multiple children in the home and one is impaired with a learning disability and the other one is not, sometimes the other sibling can feel neglected or resentful if the impaired child is receiving more attention in those situations.

Julian: How can parents find a balance between trying to support their kids and also taking care of their own mental health?

Dr. J: Yeah. I mean, the first thing is a mindset shift. You have to start looking at self-care as a series of mandatory activities that you have to engage in.

Julian: What does self-care look like as a parent?

Dr. J: So, it's going to be a multitude of different things. Some of it is going to be setting up routines where you can kind of take care of like basic body needs. So, when I say body needs, I mean like, are you, as the parent, getting your required sleep every night? I talked to a lot of parents who They make sure the kid is in bed on time, but they're up midnight, one o'clock, two o'clock in the morning, and they're living off of five hours of sleep. That's not good self-care.

Julian: I've been there, I've definitely been there.

Dr. J: Right. And if you're physically exhausted, there is no way for you to be mentally functional. And so, looking at like my sleep, how am I eating? Right? We've already brought that up a couple of times, you know?

Julian: Right.

Dr. J: Am I eating like my three meals a day? Am I getting my veggies? Am I staying hydrated, drinking enough water? Like those sorts of things. And I think too, you now, part of self-care that I always stress with people is really, you know, creating realistic routines for yourself. So, I'm always telling people to sit down and really assess yourself and your family and what kind of systems make sense, and then set boundaries around those things.

Boundaries are necessary for self-care because if you are a parent who needs that one glass of wine at the end of the night, you have to create space for that. You have to say, "You know what? I'm gonna take 45 minutes for myself. And I'm gonna sit and I watch a comedic TV show and I have one glass of wine because that is what relaxation looks like for me in these situations."

I think another part of self-care is also setting up your support network. So, like, do you have family members, close friends, or even professionals that are part of your life that you can utilize? Because these people will also help you to create space for having self-care.

And then I think in terms of specific mental health habits, I would say exercise and movement is really important for de-stressing. I encourage people to journal because you need a way to express your emotions, and you don't always have access to someone to talk to. Also too, when you're feeling overwhelmed, writing things down is a great way to work through that overwhelm. And also practicing mindfulness and relaxation techniques is really important. So, this can be deep breathing exercises, progressive muscle relaxation, even like grounding exercises.

Julian: I know for myself, I have a 25-minute ride from work to home, and I always try to either listen to a podcast or put music on, like I have specific playlists, and that helps me just get my mind right before I transition from principal to dad. You mentioned boundaries a few times. Talk to us about how important it is for our parents to set boundaries with others.

Dr. J: Yeah, I mean, boundaries are really important in preventing burnout. So, that's one reason why boundaries are really important because a lot of times, you know, parents are really trying to do their best and do the most. So, a lot times they feel the need to attend every meeting, like do every after-school thing, be on top of everything a hundred percent of the time, all the time with no help. And a lot, of times people aren't seeking support because They don't want to feel like they're a burden to other people.

And so, not only is it important to set boundaries with others, but it's also important to that boundaries with yourself through the form of understanding what your limits are and acknowledging what is a reasonable thing to ask for help with, which parents oftentimes are super bad with because I don't know where they got the idea, but they start thinking "I need to do it all on my own." And so, starting first with like the boundaries with the self, with family, something that I see comes up is like, where you have to have boundaries, is sometimes like managing opinions.

Julian: Yeah.

Dr. J: And like advice.

Julian: Talk to us about that. What does that look like when a family member has their own opinion, or they try to say something about how you're parenting and your style and you have to take that?

Dr. J: Yeah, so, you know, with boundaries comes the requirement of communication. If you have a family member who's giving you unsolicited advice, they're criticizing every move that you make, you have to explain to that person that, like, it's not helpful to you and give them some direction on, like what kind of help you're actually seeking in a situation. And also, too, if there's something that they feel the need to comment on. What does it look like to give me those comments in a way that does not make me feel overwhelmed?

Because I know sometimes unsolicited advice comes out of left field. You're like, "I'm just here to like hang out and have a good time, and now I'm being told about how I'm a bad parent," you know?

Julian: Right.

Dr. J: And so, even setting the ground rules for communication. It's like, this family member probably also cares about your child. Cool. So, let's sit down and have a conversation about if you're going to help me and help this child, what does that look like? And I think what happens a lot of times is people don't communicate, they just keep taking the hits, but all that does is add to your stress, and then it makes you more likely to avoid asking for help and support that you actually need in the situation.

Julian: Yeah, I mean, I would say one, everything that Dr. J is mentioning, especially around building those boundaries, nobody's saying it's easy. right? That is a hard thing.

Dr. J: Yes, it's extremely difficult. So, oftentimes when I'm working with patients, I tell them, "You got to prep yourself for these conversations," right? So, if I'm setting a boundary, number one, I need to clarify what the boundary is and why that boundary is important to me because that's part of what you're going to be communicating to the person when you talk to them. An added part of this is you want to think about how is this person likely to respond? It would be great if we could set a boundary And everyone was like, "This is lovely. I fully embrace you and support your boundary," but you know your people, right?

Julian: Right. Right. Right.

Dr. J: You know what I mean? And they're probably gonna come in with a different energy. So, this is why you wanna prepare or rehearse. So, one acronym that you can use to help you is called DEAR MAN. The D stands for describe. So, this you describing the situation as it is. The E is for express. And so this is where you express your feeling in a situation. A is for assert. So, with asserting, this is where you're asking for what it is that you're looking for. The R stands for reinforce, because you're letting the person know what they're gonna get if they do what you want, right?

So, this DEAR kind of breaks down the components of the conversation. The MAN part is more of the how we're gonna go about this. So, M stands for stay mindful. So, when they are making character attacks and they're yelling and they are making threats and they are doing all of those things, you want to remain a broken record and not get caught up in that emotional kind of whirlwind dynamic. Because if you get caught in that, you're never going to get back to your boundary.

The A part is for a peer confident. So, going back to what we said about fake it till you make it, even if you're really unsure about the boundary or how it's going to go, you're gonna make eye contact, you're going to speak in a clear affirmative tone, do all of those things. And then the N stands for negotiate. Because sometimes you're in situations where you do have to be willing to negotiate with the other person.

So, sometimes you have to be willing to like give to get, you know what I mean? And this is good because what it means is now we're engaged in a dialog, we're engage in a back and forth, and we can figure out how to collaborate and come to a solution, which is what you want in these scenarios.

Julian: DEAR MAN, that's a great acronym to think about. All right, Dr. J, I got one last question for you, and this is a quick one. But, are there any resources or support groups that you would recommend?

Dr. J: Yeah, I mean, I don't know if it's OK to plug Understood, but Understood is a great resource.

Julian: Of course. Plug that all. Listen, they're the ones that are giving us all this. So, yes, Understood.org for everything, of course.

Dr. J: Yeah, so I believe that that's a good resource. There's also CHADD, C-H-A-D-D. So, this is for Children and Adults with Attention Deficit Hyperactivity Disorder. There's a website called LD OnLine, which stands for like Learning Disabilities Online. Both of these websites that I mentioned are places where you can get support, you can give like resources for managing learning disabilities. And they utilize research-based information, so it's high-quality information. Most states also have NAMI, so the National Alliance of Mental Illness, and they typically have both family support groups and individual support groups.

Julian: I would also throw in all the different podcasts out there. There's so many different podcasts. One of my new favorites, I was able to appear on it recently, it's called The Mama's Den, it's for Black moms, and they talk about what it's like to be a parent and what it is like to navigate the parenting struggle. And it's real talk. Any way that you can find people talking about the same things that you're going through, it is a great way to deal.

Dr. J, I am so appreciative of you coming on. I'm so glad that I got to finally meet you like this in person. And again, I love your podcast. I think it's a great show. So, y'all make sure that you check out Dr. J's show "ADHD and," and it's right here, right here on the Understood "MissUnderstood" channel. And as always, we're going to link all the resources that we have shared in the show notes, so check those out, Dr. J, thank you so much for coming on. I appreciate you.

Dr. J: Yes, thank you so much.

Julian: Until next time, OG family.

Thanks so much for listening today. We love hearing from our listeners, so if you have any thoughts about today's episode, you can email us at opportunitygap@understood.org, and be sure to check out the show notes for links and resources to anything we mentioned in the episode.

This show is brought to you by Understood.org. Understood is a nonprofit organization dedicated to empowering people with learning and thinking differences like ADHD and dyslexia. The "Opportunity Gap" is produced by The Tara Drinks and edited by Daniella Tello-Garzon. Our theme music was written by Justin D. Wright, who also mixes the show. Ash Beecher is our supervising producer. Briana Berry is our production director. Neil Drumming is our editorial director. Our executive directors are Laura Key, Scott Cocchiere, and Seth Melnick. Thanks again for listening.