Disability parenting unfiltered: A conversation with Amanda Griffith-Atkins

CVI Now was honored to host an hour-long Q&A with Amanda Griffith-Atkins, MS, LMFT, a licensed marriage and family therapist. She’s also a disability parent to Asher, who has Prader-Willi syndrome. Amanda doesn’t shy away from getting real when talking about disability parenting. In fact, she wrote an entire book about it. How to Handle More Than You Can Handle, Caring for Yourself While Raising a Disabled Child, comes out June 10, 2025. (Available for preorder!)

Host Rachel Bennett, CVI/disability parent to Henry and the Director of CVI Now, posed questions submitted from attendees that ranged in topics from marriage and sibling advice to grief counseling, and more.

This conversation focuses on personal and anecdotal experiences, plus advice from a licensed therapist. The hosts offered strategies that work for them. Below are excerpts from our real, raw, collaborative community discussion.

It’s hard to talk about our experiences as disability parents, but we need to.

When I’m saying, “It’s hard to parent my child,” I never want anyone to think that what I mean is, “I don’t love my child. He’s a huge burden on me,” or all the things that we’re afraid people think if we say this. That’s why we don’t say it, right?

I’ll meet with a parent, and they’ll talk about their kid and how hard it is. There’s always the caveat at the end. “But I really love them.”

I never questioned that. It’s totally fine for you to say that today was a really hard day, or that you’re struggling with “XYZ.” You don’t have to put the caveat on that with me—that you really love them. Of course, you love them.

A lot of us don’t feel like we fit in with parents of non-disabled kids, entirely. You’re sitting with a group of friends, and they’re talking about test scores, or athletics, or things that you’re like, “OK, this is not my experience. My life feels so foreign from this experience. How do I belong here?”
Amanda Griffith-Atkins

That’s not a reflection on our friends. I think they want to understand our lives, and many do and support us. But the reality is — if all your friends are going to their kid’s sporting event and your child can’t participate, it’s like, well, “How does my experience fit in with that?”

I really think this is one of those instances where social media can be a really positive thing, through connecting to other parents. You could also [post on a bulletin or listserv] to see if people in your neighborhood or town want to get together and have drinks and talk about what it’s like to parent a disabled child. You could email the parents in your kid’s class.It might involve taking a risk to meet your people. When all else fails, just truly find some people online. DM people. Like, it’s OK. Those relationships are real and meaningful too.

Managing a marriage when you’re both in crisis mode

Ask yourself: Where do you need to heal? To really, truly rekindle, to fall in love with the new version of your partner, there has to be healing. And there has to be empathy.

I personally had a lot of pain about the early days, feeling like I was alone, feeling like the majority of the caretaking — the scary caretaking, the holding him while he was having a seizure, the inserting the NG tube, the taking to appointments. I felt like all that fell on me while my husband just went off to work every day.

Now, that’s not his narrative on the experience. That’s my narrative. That’s where my pain comes in. When I look back on the early days, I see myself as a victim because I only see it through my perspective. But I have to remember, this was his experience too. He was hurting, too. He didn’t know how to take care of me. I jumped in and micromanaged everything, and he felt really iced out, so he just leaned into work.

This reflects very stereotypical gender roles. Your relationship may not look like this, and your role may have been different. But I would just encourage you to take a moment and think about, “Where is my pain from the past, and also, where is my partner’s pain?” And acknowledge that we don’t exist in a vacuum. Our partner’s pain is just as real as ours is, and there needs to be healing on both ends.

And to my point earlier, you have to reconnect with the new version of your partner. Your partner has to reconnect with the new version of you. And so it is a process that requires repair, healing, forgiveness, tenderness. If you haven’t had sex with your partner for many, many years because you’ve been so stuck in caretaking, where does intimacy begin? Are you holding hands? Are you watching TV together? You’ve got to start somewhere. So take the step.

As women, we have been conditioned from day 1 to take on the mental load. I would encourage people, particularly women in heterosexual relationships, to ask, “Am I micromanaging the mental load? Am I taking too many things on?” Because if you are, there’s a likelihood that your partner feels perhaps criticized and asking “Well, why would I do it when you’re just going to say that I did it wrong?”

Look in the mirror at yourself “What can I let go of? What can be imperfect? If my partner’s going to be in charge of making dinner every night and it’s not the dinner that’s up to my standard, I have to let that go. If I’m letting it go, I have to let it go.” It’s a very difficult act to surrender that and let our partner take some of the burden, knowing that it’s not going to be done perfectly the way we want it, but maybe that’s OK. Maybe ‘done’ is good enough.

Or maybe you need to hear also—you can get divorced too. People can get divorced and totally be OK. So you have to decide, is it worth saving? And what is my role in that? And is my partner willing to carry their load too?

RACHEL BENNETT: The healing piece is huge. The resentment that we hold can get in the way of everything, you know?

AMANDA GRIFFITH-ATKINS: The resentment is huge. And again, that takes a really difficult act of forgiving and trusting and letting go, and just having empathy.

Stress during the good times (Bracing for the bad)

That’s called anxiety. I actually hear a lot of people say that they feel more stressed while they’re waiting for the other shoe to drop than when it’s actually in crisis. From a biological or a neurological perspective, when we are at that heightened point, our bodies get used to existing there, and it becomes very hard for our nervous system to come down and relax, because it doesn’t feel safe.

So we need safety. We need safety in order for our nervous system to basically be able to come down enough so that we’re not existing in a chronic state of hyperarousal.

If you think about what gets us there, probably what happened was at one point, there was a medical emergency that caught you off guard. Let’s say– this is my story, and a lot of other people’s stories too. Let’s say a seizure, for example.

You’ve never watched your child have a seizure before. Then all of a sudden, they have a seizure. And you witness it. It’s terrifying. You think, “Is my child going to die? What do I do?” Your body went into crisis mode because that’s what it needed to do.

And that’s a good thing, right? Our blood pressure’s rising. Our heart rate is rising. And we’re in fight or flight mode. Biologically, that’s what’s designed to happen to make it so that we can jump into action.

The problem, then, is that we are stuck in hypervigilance mode. Stress is everywhere.

But because we’re at that heightened state of arousal, we’re really never giving ourselves the opportunity to chill our nervous system where our heart rate comes back to homeostasis or our blood pressure decreases. And we know that there’s serious health conditions that can come from living at this level of stress. It’s not good for our hearts. It’s not good for our bodies.

But you also are allowed to live as well. Your life matters, too. And I don’t mean that in a selfish way. I mean that you deserve a minute to catch your breath and calm your heart rate down. What does that look like for you? Where do you feel safe? That’s the question I would ask.
Amanda Griffith-Atkins

That might be when I’m away from my kid. That might be when I’m snuggled up next to my kid. That might be when I’m exercising. That question could have many different answers.

It’s a lot of self-talk. It’s a lot of hard work. There’s no easy fix to getting ourselves out of survival mode and crisis mode. Sometimes I’ll be feeling nervous, and my Apple Watch will read that my heart rate is, like, 65.” I’m fine right now. My brain feels anxious, but I really am OK.” That’s like biofeedback. So checking in on the information that you do have.

Another thing that has been really helpful for me is, I say, “I trust myself that if it gets bad enough that I need to take him to the ER or give him Motrin, whatever the action is, I trust myself that I will do that.” So instead of it being anxiety about what’s out of my control, I’m thinking I will take action when necessary.

Caregiver burnout is so real and so scary because it’s easy to reach a point where you’re just going through the motions and where you’re just waiting, waiting, waiting for bedtime every night.

It’s important to know when you’re reaching burnout? Ask, “What are the things I start doing?” When I’m feeling really withdrawn, when I just want to go be by myself all night long. When it’s like, my kids are out there watching TV, my husband’s out there, and I just want to hide away. Occasionally, that’s fine. But if I find myself [like that] every night, that’s a sign that I need to think about self-care.

Advocating and our mental health

Most of the people that have chosen to be in special education are — in their heart, they really want to help our kids. It’s a matter of getting through to them, supporting them. They’re under-resourced. They’re exhausted. They have their own families.

Empathy goes a long way. And it’s a very fine balance of kindness and assertiveness. Can these things exist together? The reality is it is so exhausting. I talk about this so much in my book. It’s so exhausting sending the same email 20 times to the same person. It’s a lot, a lot of managing your emotions.

I would say, go out with a girlfriend and just get it all out of your system. Say everything you need to say there, so that when you’re with the teacher, you can just give her the golden nugget, i.e. “Thank you so much for all the work you’ve done with my child. I have some concerns about this. I really appreciate you.” A compliment sandwich.

I know it’s hard. You’ve got to resource yourself. You’ve got to take care of yourself. You can’t kill yourself over it. You just can’t.

“I feel like I’m not doing enough.”

There’s only so much you can do. The more that we do does not equal the better our child is.

Is your child fed? Are they in their main therapies occasionally? Are they safe in their school environment? These are basic needs that you’re meeting. And sometimes that’s all we can do.

Our child has to fit into the context of our life too. I feel selfish saying that. But to be honest, they fit into our family too. You’re meeting your child’s basic needs. You love them. Your child knows you love them. That’s OK.

Balancing support and emotional well-being in friendships

It’s not helpful to always talk about all the hard stuff. You have to have joy too.

Is there something that you could do that’s maybe a little more fun, a little more upbeat?

Because if we all sit around and talk about how terrible, terrible, terrible it is all the time… You’ve got to have some levity or else this feels so overwhelming.

Some of my dearest friends are actually people who don’t have kids. This has been a really interesting development in my [life] — To be able to have a complete break from talking about my kids, period. I don’t get that with my other mom friends.

“Sometimes I wish he wasn’t like this.”

It feels like that is a really human feeling to say: I wish my child was walking. I wish my child could communicate with me. That feels like a really human — I don’t like the word normal, but I’m going to say it — normal, loving mom thing to feel.

Do I wish that right now I could sit down with Asher and say, what’s going on at school? How was your day? What did you do? I literally wish that every single day. And it doesn’t make you a bad mom that you wish that your child could do some of the things that they can’t do.

It doesn’t make you a bad mom that you feel that way. That just feels so honest. You want your child to be able to do the things that other kids can do. I don’t think that’s your burnout talking. I think that’s probably your humanity talking. Have some self-compassion on that part of you that longs for that. The more that you give that airtime, the less you’re going to feel guilty about the feeling.

Having a disabled sibling and nondisabled siblings. How do we make it work?

In the same way that we’re sitting here today acknowledging our feelings, the hard stuff too, I think we have to allow that with our kids, which feels 100 times harder.

My middle son was like, “I just wish I didn’t have a brother who was disabled.” I wanted to just be like, “You don’t know what it’s like. You’re so lucky that you have all your chromosomes. Do you think he asked to be that way?” I just wanted to scream at him.

I was able to stop for a second and understand that feeling. I feel that way sometimes, too. Take a minute. Acknowledge it. And also — Asher didn’t ask to be born this way. We have the ability to love Asher before anybody else in the world gets to him. We set the tone for how maybe he views his disability.

Allow space for the hard feelings. Allow discussion. Don’t be afraid to say, “Hey, how do you feel when we go in public with Asher? Sometimes is that embarrassing? Do you find yourself not wanting to?”

Allow space for the hard conversations. And you don’t have to have the perfect answer. Try to avoid the urge to come down on your child for saying something that you don’t want to hear. That’s the biggest thing. It’s a fine balance of balancing acceptance and also just encouraging them and teaching them.

The other part of it is: We have to make a point to spend time with our nondisabled child in really focused ways, too. Because I think what happens is your child that has less needs can fall through the cracks. They’re doing fine. They have friends. They don’t need me, blah, blah, blah. And then they fall through the cracks.

And so it’s just important to make sure that we’re giving them attention. We’re invested in their life. We’re letting them take up space. We’re responding to their needs. It’s not easy, but siblings are a big thing. We have to be aware of it. Don’t let anyone fall through the cracks. That would be my big advice.

Find more conversations with Amanda Griffith-Atkins on CVI Now and find her book, How to Handle More Than You Can Handle, Caring for Yourself While Raising a Disabled Child.