The hidden grief of parenting a neurodivergent kid

Brittney Crabtree, mom of four and co-host of the Moms Talk Autism podcast, gets refreshingly honest about what she calls “grieving the gap.” That’s the particular sadness of watching your neurodivergent kid fall behind their peers. She talks about building a “friendship portfolio,” vetting safe people to open up to, and why actually feeling your feelings is the best strategy.

• Listen: Moms Talk Autism

• Watch: Parenting regrets and giving yourself grace after ADHD and autism diagnoses

Brittney Crabtree: When I got married, I had my whole life mapped out. I've got this plan, we're going to do it this way, my kids are going to do this, it's going to be amazing. And I learned real fast that is not how this family is going to be working. Neurodivergence hit us hard and quick.

Jessica Shaw: Brittney Crabtree is the mom of four kids. She has three boys from 18 to 21 and a 12-year-old girl. Three of Brittney's kids are neurodivergent. She has two children with autism, one of whom is non-speaking, and her eldest son has ADHD.

Brittney: I tell people I have the variety pack of kids. We have one of each flavor, they all present and do things very, very differently. I'm sure we're a fabulous case study for some scientist somewhere, our little family.

Jessica: There are so many highs when it comes to parenting a neurodivergent kid. They are those moments where you watch your child express their creativity in ways that feel, frankly, magical. Or where they wow you with their curiosity or kindness. Those are the moments you photograph and frame or hang on the fridge.

But of course, there are also the lows. The things you don't hang on the fridge. The moments of quiet grief that come with watching your kid struggle, and the moments as a parent where you grieve the life you thought you were going to have.

Brittney: I had to learn how to pivot and to change the trajectory of the way my family was going to operate in my own head very, very quickly.

Jessica: Brittney approaches parenting with a sense of humor, but she's no stranger to this particular kind of grief. She talks about it a lot on her podcast, "Moms Talk Autism." And that's why I wanted to chat with her, because grief about what your child and your family are missing — that grief can feel really taboo in our community.

Welcome to "Everyone Gets a Juice Box." I'm Jessica Shaw, and today on the show, we talk to Brittney about her experience processing grief.

Brittney, you talk a lot about the term you use is "grieving the gap," and I think it's such a profoundly important conversation to have. You know, sometimes when your kid gets a diagnosis, you start to go through this spiral of mom guilt, and you feel guilty, you feel grief, you feel guilty for feeling grief. It's really a vicious cycle. But how would you define "grieving the gap"? What does that mean to you?

(03:01) The emotional experience of watching her son reach milestones differently than his peers.

Brittney: Yeah, and it can mean different things for each of my children. For my son who's very profoundly impacted, he's 19, he's non-speaking, he's never going to be able to live on his own independently. A 19-year-old, you know, should be trying to leave the nest as we say, right? He should be branching out, whether that's college or a job or whatever.

He should have roommates and be hanging out with his friends. My son is not doing that, and there's a huge gap there between his typical peers and where he is. And I think it's important to realize as the caregiver — I can't speak for my son, but I can speak from my perspective — that I'm allowed to be sad about that. It's okay. It's okay for me to grieve that gap that is ever going to be widening as he and his peers age.

I think for me, when I really grieve the gap is when there is a large, life-changing event or something that's going to be happening where we as a typical society would celebrate that time of life, like a high school graduation for instance. My son was supposed to graduate from high school last year.

He's in a different program where he gets to stay in the school district until age 22, and so he's still in school right now. But all of his typical peers, my friends, their children — I was getting grad announcements in the mail. And I let myself feel sad when I would receive those things in the mail. It's okay.

I would cry and I would feel sad because I wasn't sending out a grad invite. But you know what we did is we bought that grad gift and we went to those parties and we celebrated those people. And it was still hard. It was really hard to do that, but those kids deserve to be celebrated too, and my son does as well.

And so we found other ways to celebrate him. And it's a difficult process — it takes a lot of cognitive like effort on my part — but it doesn't mean I'm just going to mask over it and not feel those things in the moment at that time.

Jessica: I have this image in my mind of you getting these envelopes inviting you to graduation parties and just even opening that, just feeling that dread, like, oh, another one, another reminder.

Brittney: It's a reminder. Exactly.

Jessica: What was the trajectory of you figuring out how to grieve the gap in a way that worked for you?

(06:45) Testing potential friends to see if they can handle reality

Brittney: Yeah, it's a long process. I would say it's a muscle I've developed. It's not something that came instantaneously when my children were young and I started noticing these differences with my kids, right? It's a hard thing to do because you don't want them, the child — your kid — to think that you're upset with them or mad at them or feeling like they're a failure, because I don't.

And so I allow myself to be sad, maybe not around them in their presence. And then we move through that — and I really truly mean you have to move through it. Don't set it aside, don't mask it, don't shove it. You let yourself feel those feelings. Am I going to let these feelings, you know, change my feelings about my kid? Absolutely not. Of course not.

I still love you, maybe even more than I did before because we're a team and we're going to figure this out. And then we try something else, and we try something else, and we try something else, and then we find the thing that works.

Jessica: Expressing feeling grief or even acknowledging it can feel like a betrayal of your child.

Brittney: Yes.

Jessica: How do you approach — how do you project this situation outward?

Brittney: That's a good question. And it depends, like you said, it depends on the situation. I can't control every single emotion that crosses my face, but if I am experiencing feelings of sadness or grief around my child that pertains to that child, I'll try to be really honest and put a name to it.

I'm frustrated, I'm sad about it, I'm sad for you, I'm sad for me. Like, we don't, you know, clearly we just want to find a solution, but we're going to figure it out, we just need more time. And I'll work through it that way.

I have found a huge part of my grief journey is finding other caregivers, other moms like myself that I can relate to my situation. And it doesn't necessarily mean their kids have the exact same diagnoses or they're the same age or going through the exact same thing. But there's enough crossover where I feel like I have someone I can talk to.

I've done lots of different therapies, I've tried all the things. And the thing that has worked the best for me, the most effective, is just finding other moms out there like myself and talking to them and being real real about it. And that's where I can really kind of just let it go.

I can cry, I can shout, I can be frustrated, I can maybe say the thing that is on my mind that I wouldn't necessarily say in front of my kid in the moment. And it doesn't necessarily mean that that friend or that person is going to even fix the problem. In fact, they're probably — they're dealing with their own stuff, right? They can't.

But just knowing you're not alone and that someone else can connect and validate with your situation just makes all the difference. I can't explain why, it just does.

(10:12) The challenges of managing multiple neurodivergent children's needs simultaneously.

Jessica: The times that I've been able to connect with other parents of like, God, yeah, I wish, you know, I wish this situation were different and this just sucks. This just is is really hard. I feel like I have to really pick and choose who I can say it to.

Brittney: Yes. There's a vetting process for sure.

Jessica: There's such a vetting process because in many ways, it's like I need — if another parent has a kid who learns and thinks differently, then I know they're going to get it. And if another parent doesn't, I feel like — and maybe this is me just projecting or whatever — but I feel a little bit like they're like, "Oh, that's pretty like harsh feeling toward your kid." It's a difficult thing to explain unless it's an if you know you know situation.

Brittney: That's also a muscle I've developed, and I think every parent will get there, is you learn that vetting process. You're pretty quick, you can — you got your radar out and you can find the ones pretty quickly. With just a few couple of phrases, I'll float a couple of things out and wait for a reaction.

And those reactions will then facilitate whether I will add on another — I'll give you another little piece and another little piece. And then I'll really drop the bombshell on you if I think you can handle it, right? They're few and far between, but when you find those golden people, it's like a treasure hunt — you've struck gold, you've won the lottery.

And those people are so precious to me. And then everyone else sits there with their jaw on the floor and they're like, "Oh, wow, that's — I can't relate to this at all." And I'm like, "Okay, well, we can still be friends, but I'm just not going to talk to you about this thing," you know?

Jessica: Right.

Brittney: I love having neurotypical families and friends in my life and I do, but those other neurodivergent families out there, they — like I said, they don't have to have the same diagnoses as us. There's always something to relate to, there's always something that you can find some common ground where you can connect. And it just — having both of those things in my life gives me, I think, a really good perspective. I need both of those things in my life.

Jessica: Yeah, and it is so true that it doesn't matter what a specific diagnosis — I mean, you and I have totally different situations with our kids, and I complete — like as you're speaking, I'm like, I understand that to my very core. I'm curious what it looks like when you do, you know, express the grief. What does it look like when it goes well and what does it look like when it goes badly?

Brittney: The key is if people start asking questions, if they start inquiring polite — you know, everyone is so so scared to offend or to worry that they'll say the wrong thing to me. And I try really, really hard — you're not going to offend me. I'm a tough girl. Like, I've heard it all, I've seen it all. Let's talk. Let's get down, let's get down in the nitty-gritty and I want to see if you can hang with me, and if you can, you're my friend for life. We've got this.

There's nothing worse also than the like, "Oh, I feel so sorry for you." Pity is the worst thing you could do. That'll shut down my conversation and my interest pretty quickly. Yeah, don't — I don't need pity, I need conversation, I need inclusion, I need understanding. And if you don't understand, then ask me questions and I'll help you understand.

Jessica: Do you find that there's also a grieving as "I know I'm going to have to just really put some distance between this parent because of how they they reacted"? Is there a grieving process to that also in you as like an adult with friends?

Brittney: Sure, there absolutely can be. I think it depends on the strength of that relationship. I think where it gets really, really tricky is if it's your family. You know, we don't choose our family all the time. And so if they're struggling, if they're not understanding, if they're not willing to ask questions or meet your family where they are, it's really tricky.

It's not necessarily someone you can just be like, "Okay, bye." No, you're going to see them again at the next holiday maybe. So how do you work that relationship? I think it's really, really important to find — we say this a lot on my podcast — we say you need to diversify your friendship portfolio.

You need to have a family member, you need to have a neighbor, you need to have someone at the school, you need to have someone at your church if you go to church or at the park or wherever it is. You need to have online friends, you need to have in-person friends. You need to have somebody in each of those places so that way, if something happens in the family zone or at the school drop-off line with your kid or whatever, you have another place to go where you feel validated and connected.

That's the best thing I ever did for myself was to find at least one person in each of all the different areas of my life that I can feel safe with with my family.

Jessica: Are you able to talk about this with your spouse?

Brittney: That's — I mean, that's number one, that's the best one if you can get that one. Yeah, my husband's all on board. We've been married for almost 25 years now. I've been married more than I've been single, which is kind of crazy to say. We've been together on this since day one, and it makes all the difference. We grieve and we process very, very differently.

And so that has also been a learning experience for me. The way I process — I like to talk it out, I want to talk with all those friends that I have in all those different areas. He's a lot more introspective, he wants to go on a bike ride by himself and process. He wants to just kind of think about it on his own. And then when he's ready, we'll chat.

Jessica: You have four kids, which is huge. With each kid, did you feel like the grieving process changed? And I know your third kid is neurotypical, though I'm sure as parents we grieve different things. It's not specific of you know, "this is the thing." But did it change with each subsequent kid and did it compound?

Brittney: Yeah, the compounding is interesting. That's where I probably struggle the most now as a, you know, seasoned parent — I have children in their 20s. It's when there's multiple dumpster fires happening at the same time and I'm here watching this tennis match of my life and my head is ping-ponging back and forth trying to keep track of all of it.

That's where it's really, really, really difficult. And that's where, yeah, the four kids is — it's a lot of kids. I find that if it's just one child with one problem in that moment, I'm able to — I've learned how to focus in and really kind of be present with my feelings, with my grief, with my problem-solving skills, being the mom, right?

But inevitably, I mean, no one can keep everything one problem at a time their whole lives. We all are dealing with lots of different problems at the same time. So that's where I grieve the most now is where I feel like I can't give my focus to this child with their problem fully in that moment.

Jessica: What advice would you give to other parents who are in, you know, as we know, not identical situation but in a similar situation who feel this grief, who don't maybe feel like they can express it, they have the right to express it, like it's okay to express it? What advice would you give?

Brittney: Yeah, I think I think that's the first step right there is it is okay. It's okay and to find whatever that is for you, find a place to express that in a safe space. For me, it's my friendships and it's my spouse. Those are important to me. And it's also giving myself time to to process that feeling and work through it.

Now, it's going to be different for everyone. I have other friends who don't necessarily want to do it that way, they have their own system. Find a system, I guess, is probably the best advice I could give. Hone it and polish it and and get it to a place where you can work through whatever it is you're working through.

Jessica: Yeah, because swallowing it and pretending like, "No, no, no, this is all like everything's great," and that whole like "I'm just going to put on a face that like, oh, none of this bothers me at all and everything's awesome" is just toxic.

Brittney: It's not healthy for you, it's going to affect you physically. And that's fine in a moment if you need it to be, but that can't be your go-to for every situation, right? And it's kind of interesting because I find that as I practice that and as I'm finding these systems that work for me and I work through the grieving process, I really don't care what other people think that much anymore.

I don't know, maybe that's an age thing too, being in your 40s and above. I just — I just don't really care what you think. I want to keep everybody safe, I want my kid to be happy. I certainly don't want you to be unhappy, but if you can't handle my life and my family, then good luck to you and we can both move on with our day.

Jessica: Yeah. And that's a great place to be when you can get there. I have not always been there. So that's a goal maybe.

Brittney: And I also would just say I feel like being able to be honest with yourself about the grief for me has really allowed me to be honest with myself about the joy.

Jessica: That's the counterpart, right? Because maybe those lows are real real low, but man, those highs are real high.

A case in point: Brittney's oldest son has ADHD, and he really struggled in school. He's smart, Brittney told me he always aced the tests, but he'd never turn in the homework.

Brittney: My oldest, he has tried doing the traditional — you know — college experience — four-year — we even did a junior college. And those weren't the right fit for him. And then we found a trade school for him that worked. And each step of that process, we had to kind of I — I won't speak for him but I had to grieve that process and work through that.

And my oldest is graduating this week from his trade school. And we are so excited for him and so proud of him. And it's the right fit. And he — the real important thing is — he is so happy and he feels accomplished and he is excited to come home from school every day and tell me about his grades and his tests and turning in his stuff.

It's a complete 180 from what it was in high school. It's an amazing feeling to know that we did it. His way, right? We found a way that worked for him and we did it. And that joy, it's wonderful. And I'm sure he's going to have hard times — we've got to find a job now, you know? That's going to be fun.

Jessica: One step at a time, Brittney.

Brittney: One step at a time, right? But we made a big step, and we grieve the lows really, really hard, but we also we love we live the joys as much as we can.

Jessica: Well, congratulations on your son's graduation.

Brittney: Thank you.

Jessica: And thank you so much for being here.

Brittney: It was my honor. Thank you.

Jessica: It really resonated with me when Brittney spoke about grief as a muscle that we develop. That first rush of grief is like lifting weights for the first time — that feeling of, am I about to fall flat on my face? Will my body buckle under everything that I'm feeling?

Not to hit this metaphor too hard — well, okay, I'm going to hit it pretty hard — but being able to acknowledge the grief and share it with another parent who gets it is like having another person spotting you. It may be hard, you may have moments of holding your breath and clenching your insides, but ultimately they're there to support you and you will get up again.

That's it for this episode of "Everyone Gets a Juice Box." We'll see you next time.

Thanks for listening to "Everyone Gets a Juice Box." Our show is hosted by me, Jessica Shaw. It's produced by Cody Nelson, and video is produced by Calvin Knie and edited by Jessie DiMartino. Briana Berry is our production director, and Neil Drumming is our editorial director.

If you have any questions for us or ideas for future episodes, write me an email or send a voice memo to podcast@understood.org.

This show is brought to you by Understood.org. Our executive directors are Laura Key, Scott Cocchiere, and Jordan Davidson. Understood.org is a nonprofit organization dedicated to empowering people with learning and thinking differences like ADHD and dyslexia. If you want to help us continue this work, donate at understood.org/give.