Welcome to One of a Kind: Journeys in Neurodivergent Parenting

A few weekends ago, I was hit with an overwhelming sense of grief. It was unwelcome and strange. What I was grieving hasn’t even happened, and honestly, I don’t know if it’s going to. My parenting group chat held a conversation about severe aggression and behaviors in their kids. As I read through everyone’s experience, it hit a nerve. My family is navigating aggressive behaviors from my neurodivergent 5-year-old. I am afraid that we may experience increasing severity in aggression as she grows. It feels wrong to grieve a potential future for myself and for my family. I can’t predict the future. This wave of grief isn’t an unusual experience though. When I hear about the struggles of other parents of neurodivergent children, I know there is a long road ahead for me with this cruel cycle of rumination, grief, and sorrow.

Maybe this sounds familiar to you. Maybe you experience this as well. And maybe you don’t have many people to talk to about it. I want to welcome you to this space of the Heartwise blog. I am writing this with you in mind.

Before we dive into this post, let me introduce myself. I’m Alyssa, and I am a new intern at Heartwise Counseling. I’m a mom of 2 young kids. The topic of parenting a disabled and/or neurodivergent child is personal for me. My daughter has a rare genetic condition called Malan Syndrome that causes several disabilities, neurodivergence, and baffling behaviors. I hope that by being vulnerable about my experiences and emotions as her mom is validating for you. You aren’t alone, and you aren’t a bad parent.

Parenting Neurodivergence

Embracing neurodiversity doesn’t mean ignoring the real challenges my family faces. It means changing our focus. It’s the difference between asking the unanswerable question of, “How can I fix my daughter?” and instead asking, “How can I, and the world around her, better support her unique needs?”

When we view disability and neurodivergence as a natural part of human diversity, we shift from a place of deficit to a place of accommodation. We can stop demanding that our children mold themselves to fit a rigid world. Instead, we demand, work toward, and create a world that is spacious enough for them to exist exactly as they are.

We’re Disenfranchised, Not Wrong

I’ll take a moment here to share how difficult this is, especially from my experience as a parent to a disabled kiddo. Often, on my journey, I hold many truths at once. I love my daughter. She is exactly who she is, and she brings joy to my family. I will endlessly advocate for her. At the same time, I struggle with complex grief and frustration about the limitations and challenges that she faces, and how those impact our family. Then, I grapple with the guilt for having those feelings. The same weekend the aggressive behaviors discussion occurred, my daughter had a particularly rough episode. After spending more than an hour co-regulating with her, I stepped away to regulate myself. Part of that process for me was letting myself cry about how unfair it feels that my parenting journey is as hard as it is.

Do I wish things were different for her and for my family? Yes.

As parents, we’re expected to love our children exactly for who they are. And I do. I love her incredible humor, her big, blue, and expressive eyes, and how her language is expanding to the point where she says “I love you” unprompted. At the same time, I have found myself wishing she could easily express her feelings and needs, that we didn’t have to answer her repeated questions because of her anxiety, and that she had a better outlet for her hitting and hair pulling. As understandable as it is for me, and all parents of disabled and neurodivergent kiddos to want and wish for these things, I feel deeply guilty for wanting them. I have  internalized the toxic expectations that a “truly loving” parent has no room for grief or frustration. I feel like I am betraying my daughter. I worry that by wishing these struggles away, I am wishing away parts of her. It’s heavy. It’s isolating. And it’s not talked about enough. I also know that I’m not alone in feeling this way.

What makes this harder is, we don’t have a magic wand to make things easier for us. So we wrestle with these complex emotions of loving our kid, guilt for wanting something different, shame, because how dare we want that, and anger, because why not!? We’re left with an internal conflict because our real, valid emotions don’t reflect what society demands of us to feel about parenting. There’s a name for this experience. It’s a phenomenon commonly referred to as disenfranchised grief, though the internal conflict is greater than “just” grief.

If you can relate to the experience of disenfranchised grief, I want to reassure you that you are not wrong. You are not bad. You’re in a position that is hard, and you probably don’t have all the support you need. Of course you didn’t expect this. Of course you weren’t prepared for the endless appointments, the exhausting home life, and a sensitive nervous system. The supports available are so limited, and access to necessary assistance is shrinking.

Helping You Navigate the One of Kind Journey

You don’t have to hold these conflicting truths alone. In this corner of the Heartwise blog, I’ll be exploring these topics and creating space for the truth that your well-being matters just as much as your child’s.

At Heartwise, we understand that supporting a disabled and/or neurodivergent child feels like you are running on empty, and still being asked to give more of yourself every day. Even parenting in a world that feels increasingly demanding depletes your reserves. Our goal at Heartwise is to support you as an individual, and your family as a unit. We accept you exactly as you are, disenfranchised grief and all. We’re here to help you navigate the overwhelm, the guilt, the broken systems, and the moments of joy, even if they feel hard (or impossible) to find. We’re here to provide tools, and to sit in the pain with you when it feels like the tools will never be enough.