Show Notes:
Are you grieving the life you imagined for your child? This episode validates the unspoken loss parents of children with disabilities often feel, offering comfort and tools for finding peace.

In this powerful solo episode, host Tonya Wollum shares a teaching segment from her “Parenting the Intensity Retreat” conference, addressing the often unspoken grief parents experience over the loss of imagined dreams for their children with disabilities. This episode offers validation, coping strategies, and a path to finding peace and embracing your child’s unique journey.

Key Takeaways:

• Grief is a Natural Response to Loss: Understanding that grief isn’t limited to death but also applies to the loss of dreams and expectations for our children.
• Validate Your Emotions: It’s okay to feel sadness, anger, frustration, and guilt. These are normal parts of the grieving process.
• Practice Self-Compassion: You’re doing your best, and that’s enough.
• Seek Support: Connect with other parents, consider support groups or therapy. You are not alone.
• Focus on the Present: Celebrate your child’s strengths and achievements, find joy in everyday moments, and create lasting memories.
• Adjust Expectations: Align your expectations with your child’s unique abilities and needs, embracing their individuality.
• The Power of Gratitude & Mindfulness: Cultivate gratitude by focusing on positives, keeping a gratitude journal, and practicing mindfulness.

Important Moments & Timestamps:

01:02 Introducing the Grief of Lost Dreams for Children with Disabilities
01:44 The Complexity of Grief in Special Needs Parenting
02:57 Unique Challenges of Special Needs Parenting
03:45 Understanding and Accepting Grief in Special Needs Parenting
04:12 Seeking Support
04:37 Focus on the Present
04:52 Personal Story: Writing Letters to Teachers
07:04 Set Realistic Expectations
09:00 Seek Professional Help
09:28 Vitamin G: Practicing Gratitude & Mindfulness
10:19 Finding Hope and Healing
10:43 Closing & Free Mindfulness Guide Offer

Resources Mentioned:

• FREE Mindfulness Guide: Download your complimentary guide and access more resources from Water Prairie by visiting: https://waterprairie.com/calm
• Parenting the Intensity website and podcast: https://familymoments.ca/

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

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Episode #129: Grieving the Imagined Child: The Unspoken Grief in Special Needs Parenting

Are you grieving the life you imagined for your child? This episode validates the unspoken loss parents of children with disabilities often feel, offering comfort and tools for finding peace.

(Recorded January 10, 2025)

Full Transcript of Episode 129:

Before you became a parent, what did you imagine it would look like? Did you see your children as always happy and never questioning anything you told them to do? What is life really like for you as a parent? Maybe your home doesn’t look quite like this picture shows, but I guess if you’re like me, you might feel like this is what a typical day might look like.

Welcome to the Water Prairie Chronicles, a podcast for parents of children with disabilities. I’m your host, Tonya Wollum, and I’m glad you’re here.

This episode is a little different, but it’s a topic that’s been on my heart and one that I know many of you relate to.

What you just heard was how I opened a teaching segment at the Parenting the Intensity Retreat earlier this year. I wanted to share this specific teaching with you because it covers a crucial and often unspoken aspect of parenting a child with a disability.

The grief some parents experience over the loss of the dreams they had for their child’s life. I know this can be a heavy topic, but it’s one that’s important to acknowledge and process. It’s about recognizing that shift in perspective and finding peace as we parent our children.

So let’s go back to that conference moment as I introduce the topic more fully.

Introducing the Grief of Lost Dreams for Children with Disabilities

As parents, we often have dreams and expectations for our children’s futures. When our children face challenges or disabilities, it’s natural to grieve the “could have been.”

Today we’re going to explore this complex emotion and discuss strategies for coping and finding hope. today, I am gonna be using terms like special needs and disabilities, and You may have a child who has no disability.

They just may have really intense emotions. They, may be very young and still in a tantrum stage of life. Or maybe they’re in a transition time where they’re acting out a little bit more. I’m talking about all of our kids.
So, Listen through to the end because I think you’re gonna find some techniques and some tools that are gonna help encourage you and support you during this time of parenting your darlings.

The Complexity of Grief in Special Needs Parenting

Grief is a natural response to loss. We often think about it after we’ve lost someone, when someone’s passed away, but it’s not just limited to death. It can also arise from the loss of dreams and expectations, and that’s what we’re gonna focus more on today. When our children face challenges, we may grieve the loss of that perfect child that we imagined before they were born, or even when they were younger, and they’re going through different stages of their lives.

There are times when I wonder what my children’s lives might have been like if they didn’t have some of the struggles that they had to learn to live with. I think we as parents often feel this loss much more than our children do because they only know the life that they have. The grief is our own, and it comes from the imagined future of our children that starts before they’re born.

I think every parent goes through some type of adjustment as the children grow into individuals. Have you ever met a dad who wants a son to be a football star? Or maybe a mom who wants her daughter to achieve something that that mother always dreamed of doing herself?

Unique Challenges of Special Needs Parenting

Even without having a child with big emotions or a designated disability, we as parents have to make adjustments about who our children will become as we get to know them better and encourage them to follow their own dreams. Parenting a child with special needs presents unique challenges We may grapple with high expectations, fear for our child’s future, and the constant balancing act between support and appropriate boundaries.

These challenges can lead to feelings of grief and loss. I know firsthand how overwhelming these feelings might be. It’s important to acknowledge these emotions and give ourselves permission to grieve. It’s okay to feel sad sometimes. You may be hearing a story that your child’s talking about being at school and no one’s playing with them, or no one wants to sit beside them in the lunchroom.

Or maybe you’re at the playground together and you see that they’re playing by themselves and other kids aren’t inviting them to come play. It’s natural for us to want our children to be accepted and loved by everyone. It’s okay to feel what you’re feeling. It’s okay to feel a range of emotions, including sadness, anger, frustration, and guilt.

Understanding and Accepting Grief in Special Needs Parenting

These feelings are normal and a part of the grieving process. Practicing self-compassion is crucial. Remember, you’re doing your best, and that’s enough. Keep in mind too that our children don’t usually feel the same as we do. If we’ve helped them to find a supportive community, they feel loved and accepted by those who matter to them the most.

Seeking Support

Don’t hesitate to seek support from others. Connect with other parents who understand your journey. Consider joining support groups or seeking therapy. Sharing your experiences can provide comfort and validation for you. You may find that there’s a younger parent that you can come alongside of and help share what you’ve learned along the way.

Focus on the Present

Remember, you’re not alone. There are many people who care about you and your child. While it’s natural to grieve the past, it’s important for us to focus on the present. Celebrate your child’s strengths and achievements, no matter how small. Find joy in the everyday moments and create lasting memories together.

Personal Story: Writing Letters to Teachers

When my children were in elementary school, I would start the school year by writing letters to their teachers. It was typically an email. Sometimes it would be on paper, but usually it was just an email where I was reaching out to them ahead of time and I would usually time the letter within a couple of days of school starting knowing that they may not read it until after the first day of school.

And I did this because my children both had educational plans in school. The teachers would’ve gotten a file on them and in the file it would have all the things that they needed help with, where their challenges were. It might’ve had notes from past teachers if there had been negative situations that they wanted to pass on to the next teacher, and I didn’t want that to be their only view of who my children were.

So I would take this opportunity to introduce my child to their teacher. I would point out their strengths, their goals, their passions, you know, what did they like to do to help? Both of the kids love to be classroom helpers. So where are their strengths? Where could they be used? And for my son, where could he be redirected?

If he was getting off task a little bit, how could, how could the teacher bring him back in? And I did this in a way that was looking at the positives of my children instead of saying. If they’re being bad, this is what you could do. It was more, you know, they, they, they love to help. This is how they like to help, or these are what their passions are they, are they into dance?

Are they into sports? Do they like art? Do they like writing? And it might be something that goes beyond what a teacher might assume that they can do because of a disability that they may have. So for example, my son has dysgraphia. Maybe you have a child with dysgraphia who loves to write. It would not be a, an assumption that a teacher would make my daughter’s very visual, even though she’s visually impaired.

She loved art, she loved writing. She did a lot of things that could have been a deterrent for her because of her, her vision loss. But, um, a teacher wouldn’t have thought of that naturally. And so it gave them a way to know how they could encourage and support my children. But it also gave them a way to see them for who they were.

It always seemed to help and it also helped my relationship with them when I did have to come in for a parent conference or if there was a question about something.

Set Realistic Expectations

Adjust your expectations to align with your child’s unique abilities and needs. Embrace their individuality and celebrate their progress.

No matter how small, let go of the unrealistic expectations and focus on what truly matters. When my husband and I first learned that Emily was visually impaired, one of our early questions was, how is she going to get around as an adult? Will she be able to drive? Where will she need to live? These weren’t things that you usually have to think about when you have an infant, but that was where my brain went to was, you know, how do I get her ready to be that independent adult one day?

And so we worried about that a little bit, and then we did some research and we started meeting people who had a similar amount of vision loss and we regrouped and we changed what our goal and vision for her future was. Was it a loss? Yeah, it was for us. It wasn’t for her, though. Emily’s 24 right now, and she doesn’t know it any differently.

She knows that she’ll need to either be able to walk or use public transportation or call an Uber or a friend if she wants to go somewhere, and she doesn’t worry about that. I don’t worry about it now either. But when she was little, that was one of the things that just was always in the back of my mind, you know?

Well, she’d be limited on where she can live. But today we have Uber. We didn’t have options like that 24 years ago when we were first thinking about this and where we live right now, there’s a bus stop that’s less than half a mile from our house so she can use public transportation. She’s gone into cities and ridden the metro system.

So she’s, she’s able to figure this stuff out and your child’s going to be able to overcome some of the challenges that you might see as a parent. But they’re not gonna know what was a challenge because it’ll be what you’ve helped them to prepare for. I think it’s only fair that we acknowledge that sometimes grief can be overwhelming, and I don’t want you to hesitate to seek professional help if that’s something that you need to do.

Seek Professional Help

A therapist can provide guidance, support, and practical tools to help you navigate your challenges. So there’s no shame in looking for professional help if that’s where you are. I follow a YouTuber for, um, I try to follow a keto way of life, and he, he has a keto channel, so I follow him on that. But he always talks about vitamin G, not vitamin C, not vitamin A, but vitamin G.

Vitamin G: Practicing Gratitude & Mindfulness

And he says, that’s vitamin G, G for gratitude. Don’t know if he’s the one that coined the phrase or not, but I really like it and I wanted us to look at. Practicing gratitude. You can cultivate gratitude by focusing on the positive aspects of your life. Keep a gratitude journal, practice mindfulness, or simply take a moment each day to appreciate the good things.

Gratitude can shift your perspective and bring more joy into your life. If you haven’t worked with the gratitude journal before, it’s an easy way to focus on the positives and a good reminder on the hard days that not every day is going to feel that way. I like to use it as a yearly memory book that I can look back on and see what was happening that year, and you can add photos and anecdotes of the fun things that happen throughout the year.

Finding Hope and Healing

I like to put like quotes from my children or a little story of what we did. Just as a way to remember it. As we close, remember that grief is a natural part of the human experience. By understanding and accepting your emotions, seeking support, and focusing on the present, you can find hope and healing.

Closing & Free Mindfulness Guide Offer

I hope that today’s episode offered you comfort, validation, and a reminder that you are absolutely not by yourself on this journey. As I mentioned in the conference, you’re strong, resilient, and a part of an incredible community here at Water Prairie. In the presentation, I briefly touched on the power of mindfulness, and as part of the conference, I created a free mindfulness guide to help you practice these techniques in your daily life.

If you’d like to access that guide and receive more support and resources from Water Prairie, you can download it for free by visiting waterprairie.com/calm. That’s waterprairie.com/calm. I’ll put the link in the show notes along with information about the Parenting the Intensity Retreat where I spoke.

If this episode connected with you, please share it with another parent who might need to hear it.
And if you haven’t already, make sure to subscribe to the Water Prairie Chronicles, wherever you listen to podcasts, so you don’t miss future episodes. Until next time, remember to cherish those small victories, embrace the love, and take good care of yourselves.

I’ll see you next time.

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FAQ:

Is it normal to feel sad or guilty about my child’s disability?

Absolutely. The episode explains that grief is a natural response not just to death, but also to the loss of dreams and expectations. It’s normal to feel a range of emotions, including sadness, anger, frustration, and guilt, and practicing self-compassion is crucial.

How can I cope with the “loss of dreams” for my child?

The episode suggests several strategies: acknowledging and validating your emotions, seeking support from other parents or professionals, focusing on the present, celebrating your child’s unique strengths, and practicing gratitude and mindfulness.

Where can I find support if I’m struggling with the feelings of grief in special needs parenting?

You are not alone. The episode encourages connecting with other parents who understand, joining support groups, or seeking professional therapy for guidance and validation.

How can gratitude and mindfulness help me as a parent of a child with special needs?

Practicing gratitude helps shift your perspective to focus on the positive aspects of your life and find joy. Mindfulness helps you stay present and appreciate good things, providing a reminder that not every day will feel challenging. A free mindfulness guide is offered to help you start.

How can I adjust my expectations for my child’s future?

The episode advises aligning your expectations with your child’s unique abilities and needs, embracing their individuality, and celebrating their progress, no matter how small. It emphasizes letting go of unrealistic expectations and focusing on what truly matters now.