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Amanda Griffith-Atkins, MS, LMFT, decodes the many emotions of CVI parenting, with an important focus on grief and self-compassion. We explore navigating living with the duality of fiercely loving our child and knowing they are a gift to this world and have a right to accessibility (and we demand disability inclusion), and also grieving their challenges, pain, and having to live in a world that is not fully accessible or sees them as worthy and enough.
Amanda is a licensed marriage and family therapist whose clinical background, combined with her own experience as the mother of a disabled child, has given her a unique and refreshing perspective on parenting. She is the founder of Amanda Atkins Counseling Group in Chicago. Amanda leads an incredible Instagram community that is a big, wide, tender space to hold all the truths about our experiences as disability parents. It has helped many of us process our experiences and get through really, really tough days.
Amanda created a therapist directory, where all therapists on this list are experienced in working with parents of disabled children. Many of these providers are disability parents as well.
Below are excerpts from the transcript of Amanda’s opening conversation about navigating grief.
I have a 13-year-old son, Asher, with Prader-Willi syndrome and got his diagnosis at seven weeks old after a NICU stint. The rest is history. I struggled a lot in the beginning with all these feelings that I’m sure many of you can relate to: feelings of anger, disappointment, and grief. I powered through as we do. I didn’t feel like there was space to own up to the difficult stuff for a number of reasons.
I noticed that when I had my second son, who was born with no disability, I would have this pit in my stomach while watching him do normal kid things. There’s one moment that stood out to time. At a soccer game with his 3-yeard old peers, it was the cutest moment in the world, but I felt tears well up and a pit in my stomach. And I was like, what is going on with me? This should be a happy event, but I just felt this overwhelming sense of dread.
I started to unpack it and realized I was feeling grief. Suddenly my eyes opened to this really normative parenting experience. And with Asher, I missed out on all of this. Instead of being at the soccer games, I was focused on physical therapy and medical procedures and had a lot of fear about the future. The more that I was able to tap into the things that I felt that we missed out on or how our experience was different from other families, the more I started to be in tune with my grief.
I want to invite you to focus on your grief. I want to ask you to just be mindful and think about when is the last time that you noticed yourself feeling grief about your child’s disability or your child’s suffering, or your experience as a disability parent. And this isn’t something that we often do as parents because we are trying to be out there surviving.
Maybe things that come to mind are a medical procedure that your child had or a time that you were around a niece or nephew that didn’t have a disability, a time that you had to advocate with the school, or something else. I want you to think about it and tap into that feeling for a minute. If possible, I want you to notice where you feel it in your body. For me, when I feel grief, it’s like a pit in my stomach. I start to feel dread. My heart starts beating fast.
We have these physical symptoms that can indicate to ourselves that we are feeling grief right now. Be mindful of that experience so that you can help identify when you’re actually feeling grief about parenting.
Grief is a normal human experience. When somebody dies, there’s plenty of permission in our culture to speak about your feelings. But for some reason, when it comes to disability parenting, we’re not quite as allowed to talk about our grief as parents. And there’s a lot of things that go into that.
The general culture of avoidance and discomfort with feelings of grief. We hear all the time: positive vibes only, good vibes only. We see it on t-shirts. There’s no room for your bad vibes, for the hard things. Wellness nowadays points to if you think about positive things, positive things are going to happen. But as disability parents, we know that is not true. Hard things can happen to anybody for no reason at all.
People don’t know what to do with our hard feelings. Most of the time, when we share our challenges as disability parents, people are quick to share platitudes like: “Oh, but he doesn’t look like he has a disability, he looks so normal,” or “well, God only gives you what you can handle,” or “God gives special kids to special people.” What’s at the core of this is that when we say I’m really struggling right now, the other person isn’t quite sure what to say to comfort us. What we need to hear are responses like: “hey, you’re not alone,” or “it’s OK that you’re having a hard day. What can I do for you today?” It’s difficult for people to sit with discomfort. And that sends the message to us to not talk about it.
Our grief and guilt are so intertwined. As parents of kids with disability, there isn’t the space to name our grief, so we have guilt about our grief. If I’m feeling grief about my child’s disability, I must not love them. Or if I’m feeling grief about my child’s disability, I must be ableist. And I must not be comfortable with disability. I want to totally bust these thoughts.
It’s a normal human experience to feel grief when we see our child suffering or not able to do certain things. There can be this sense of sadness that our child is in the situation that they’re in. And as parents, there are certain things that we feel like maybe we’re missing out on, too. And it’s tricky, right? I hate that I feel that way. But before I can move forward and really process it, I have to own that’s how I feel without judgment. Guilt can be overwhelming and a blocker to giving ourselves permission to talk about our grief.
Before we can move forward and really process our grief, we have to own that’s how we feel without judgment. Guilt can be overwhelming and a blocker to giving ourselves permission to talk about our grief.
We don’t want to talk about grief because we never want our kids to think we’re disappointed in them. There’s a big difference in the constraints that our kids run up against in the world versus being disappointed with them. We naturally put on a happy face when we’re around our kid, understandably so. But we are still allowed to feel the emotions that come with all they have to navigate in an inaccessible world. We need space to give parents a chance to honestly speak about their struggles so that we can become better parents and advocates for our children. We are whole people, and we have to give ourselves permission to express the difficult stuff, too.
There are moments that stir up our grief: the milestone markers in your child’s life where you envisioned things being different, or had to really advocate for something, or your child had to do a medical procedure.
The analogy that I always use is if you take a pebble and throw it into a pond or body of water, there’s initially that big splash. This can be when we get the diagnosis or there’s a big medical event, our life turns upside down, and everything is dysregulated. Eventually, we start to find our new normal, but there are little ripples along the way. First day of kindergarten, ooh, that’s a big ripple, or a new health concern, ripple, or transitioning from high school, ripple. Our grief over time spreads out, but it’s always there lingering. It’s good to remember so you can identify it in the moment: “Oh yes, I’m feeling grief. I understand why I feel this way, and I can have compassion for myself.”
Pauline Voss, a licensed marriage and family therapist, coined the term ambiguous grief, which can be broken into two different terms—physical and psychological.
An example of physical ambiguous grief is losing a loved one during COVID, where the person had to go to the hospital without anyone. This can be considered an ambiguous loss because there’s so much that went on behind closed doors that a loved one didn’t get to see. They are grieving the experience that they didn’t have and the distance that they had from the person they lost.
Psychological ambiguous loss is grieving how we thought it would be and the experiences our child and family didn’t get to have. There’s no real closure on ambiguous loss. There is no end to it.
There’s this ongoing thing that’s causing me re-occurring grief, and there really is no end in sight to it. So ambiguous loss is something to keep in mind. Because as disability parents, we experience it all the time.
There’s almost always a secondary emotion that comes with grief, which sometimes makes it a little bit difficult to identify grief. The two emotions that I most often experience with my grief (and yours may be different) are guilt and anger.
The guilt: I shouldn’t feel this way. This makes me such a bad mom. Other disability moms don’t feel this way. What’s wrong with me? I’m just pushing our grief down and not giving myself a chance to process it.
The other emotion that I find myself frequently feeling is anger. One example of this is my son’s teacher recently went on maternity leave and I initially felt anger toward her, but what I really felt was sadness that my son requires such consistency as an eighth grader. And I feel like he’s missing out and falling through the cracks of the school system now with a long-term sub. I felt angry at the teacher and that overtook my grief. It just feels so much better to feel angry than to be grieving. I don’t know about you, but I would much rather be pissed off than in the corner crying.
There’s usually a gentler emotion underneath anger: grief, vulnerability, rejection. And I know for me with disability parenting, anger likes to take the driver’s seat because it’s so much more empowering and doesn’t make me feel so vulnerable.
Everybody experiences grief differently. Some people really need to talk about it, while some people would prefer to process it alone. With your loved ones, talk about how each of you responds to grief and stress.
We always hear the statistic that 80% of parents of kids with a disability get divorced. That statistic is not true. Research shows that the likelihood of disability parents getting a divorce is about 2% higher than your average couple that’s not dealing with disability. So the discrepancy is there, but it’s not anything that’s quite as alarming.
However, you can see how over the years, your marriage can wear away. Your marriage can really be impacted by disability parenting because there’s so much going on individually that we may not be processing with our partners. I would encourage you to ask, do you feel like you feel grief? How do you feel like you express it? What do you feel you need when you’re having a grief moment?
You and your partner probably express grief differently and need to be cared for in a different way. Ask each other simple questions: ls it helpful if I sit by you and put my arm around you when you’re feeling grief? Or do you need to do something actionable, like going for a walk or a run when you notice yourself feeling grief?
We’ve heard about the five stages of grief developed by Elizabeth Kubler-Ross in the ’60s. Today, we know these stages—denial, anger, bargaining, depression, acceptance—are not linear, and it’s not like, oh, once I hit acceptance, I’m good, the grief is done. Instead, people tend to interweave in and out of them at different points.
Fast forward to now when David Kessler, who helped Elizabeth Kubler-Ross come up with those five terms, coined the sixth stage called finding meaning.
In my professional work, where I do a lot of grief work, I have found the topic of meaning-making to be so essential to integrating our grief and not making it be this thing that we’re experiencing. The point of meaning-making is that we are coming to terms with our loss. And if you notice, I’m using the words coming to terms with our loss, not getting over it. Because we never master grief. We never master a loss. We will never reach a point where we’re like, oh that really worked out well. I will always hold some grief and sadness in my heart that we’ve had this experience.
This idea of meaning-making is we want to better understand the experience. How has this experience shaped me and changed me as a person? And it’s a very compassionate view of our experience. How does the disability impact you? What’s the meaning that you’re drawing from it? How has it shaped your life? Do I need to do something with this? And the answer may be no.
Yours might be you have a friend who has a child with a disability, and you are intentional about caring for them and meeting with them. You certainly don’t need to start an Instagram community or go talk to a school or something. That might not be your thing. What do I do with this and how does this shape me? How has this experience changed me?
And for me, that’s been really helpful in conceptualizing my grief and feeling like it’s not just this bad thing that happened to me, but I’m able to grow. And it has become a part of me. It’s not something that happened to my son and me—we’re not victims.
Meaning-making requires us to see the good, the bad, and the neutral and try and look at it without judgment in a compassionate way.
Kristin Neff, a therapist and a parent of a son with Autism, developed this term called mindful self-compassion. Neff describes that if we’re able to approach our emotions with a more self-compassionate view, then we’re able to navigate the hardships of disability parenting better.
We’re allowing more space to feel our emotions. We’re allowing less judgment on ourselves and just owning the humanity of the experience and acknowledging that, of course, I feel grief. Of course, I feel sadness. It’s human nature. It doesn’t make me a bad parent. It makes me human.
The way I like to explain it to people is it’s treating yourself the way that you would treat a friend that came to you and said, “I am just having the hardest day today. I’m so over this disability. How did this life even happen?” You wouldn’t look at that friend and be like, ooh, you’re not a very good parent for thinking that, right? You would say, of course, you feel that way. Here, have a cup of tea. Let’s sit together and talk for a minute.
I want to encourage you as you’re approaching your own grief, can you give yourself space in the same way that you would give to a friend? Can you be compassionate? Can you be kind to yourself and just try and remove the judgment?
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