Unexceptional Moms: Hope and Encouragement for Special Needs Parents

This is part two of an interview Erin and I did with our friend Main. If you have not listened to the first part. You can find the transcript and show notes . The best way to support the podcast is by leaving a review on. Episode outline: Physical therapy: the difference between how disabled adults see therapy vs how parents of disabled kids see therapy. How to make choices when the medical community pushes for certain interventions. Finding the balance on how much to "push" our kids and letting them be gloriously themselves. What it is like for disabled adults to listen to parents of disabled children talk about caregiving. Things that contribute to parents of disabled kids and disabled adults to be at odds. "It's hard for me to feel a lot of sympathy or empathy when people talk about how hard it is to be a caregiver. Because as a caree I don't get a lot of sympathy. And there's no caree support group, where we can go and complain about our caregivers." Marin Hann Transcript available at

If you parent kids with disabilities and you are nondisabled, chances are you don't know much about disability culture. Personally, learning about my children's culture has been a journey and a process, something I don't always get right and I am still learning. In this episode of the Unexceptional Moms Podcast, Erin and I talk to Marin Hann -- who is disabled -- about disability culture and identity. We discuss how parents can build a bridge for their disabled children to learn about their culture, a culture as parents we do not belong to. Episode notes: Growing up as a disabled child being raised by non-disabled parents meant Marin's parents were not aware there was such a thing as "disability culture" and neither was Marin until her teen years. But yeah, my parents didn't know that there was a disabled culture, or what that meant, either. And it makes sense, because I don't know how they would have access to that prior. And they didn't really know anything much about raising a disabled child till I showed up. Marin Hann Marin explains internalized ableism as well as lateral ableism (the "hierarchy" of disability, and how problematic that is). And Erin and I express that even as parents of disabled kids, we are often ableist. Although we do not come with an answer, we tackle the topic of separating our children from their disability. We also discuss "the great divide," or the divide that exists between parents of disabled children and disabled adults. We address the history of disability, and how little our culture teaches about it. We discuss how watching the Netflix documentary, Crip Camp, is a good place to start. Marin: Your child has a disability, you think that there's not a cultural difference between the two of you, you think that you're from the same culture. Ellen: I did. Marin: Yeah. I did, too. I thought I was from my parents’ culture as well. Erin: That's really profound Marin and I think a lot of parents listening are gonna go, "Wow." Marin tells us a little about the Disability Pride Movement, and how important it is for parents to be a "bridge," connecting our children to their community/culture. We talk about the role of physical therapy as opposed to occupational therapy. The positives, and the unintentional messages sent when we push disabled kids to become as "non-disabled" as possible. This is especially understandable as parents are pressured by the medical model of disability. Transcript:

Most students who receive special education qualify for a "transitions" program that allows them to stay in school until age 21. These programs are meant to provide job training and life skills, preparing our kids to become as independent as possible. But are these programs really providing the type of training that is truly beneficial for our kids? Join the podcast as I have a conversation with Meriah Nichols from "." Show notes: Before talking about employment training, we go back to the beginning and discuss the role that ableism plays in the limited options made available for our kids. Also important how as parents, sometimes we also have to address our own ableism (spoiler alert: it is one of the hardest things I've had to do as a parent of two disabled kids). A short discussion on grief, and the fact that most parents experience grief when their child is first diagnosed. Keeping in check the language we use, and what happens to our kids when we push them to be as "non-disabled" as possible. Finding empowerment in disability. What does that look like? How does that translate into future interests and possible job opportunities? How important it is to discover the gifts and possibilities that are a direct result of disability -- the assets. Inclusion: the current model of inclusion doesn't help our kids or their peers as we think about their future possibilities once they reach adulthood. How cana. school play to a student's strengths and build upon those strengths as possible career paths? Many programs and organizations that are meant to help our students tend to be steeped in ableism, and they do not provide ongoing change beyond one time events or experiences. There isn't much available after transition programs because of the limited "training" they provide. Meriah shares about her recent blog post: How do we shift culture so that we create better "out of the box" opportunities for our children? Our kids depend on their community -- that is, the community of individuals who are like them. The community where they belong, where they can be who they really are. How to connect with Meriah Nichols: Her Blog: Facebook: Twitter: Instagram:

Online learning, hybrid models, or full-time school. These are the options and choices to navigate as this new school year begins in the midst of a global pandemic. What are we -- parents of kids with disabilities -- to do? Find show notes and a transcript at: ellenstumbo.com/epsiode38/

Because of social media, many people nowadays live their lives in “public.” From what you ordered at a restaurant, to rants about neighbors, to new hairdos. Everything goes… including sometimes our children’s privacy.

Ellen Stumbo, Kevin Timpe, and Carlyle King discuss the "great divide" between parents of disabled children and actually disabled individuals. 

The New Year is a great time to start "new." But how do resolutions work when we have already so much on our plate?

Parents of kids with disabilities have three main needs: Need for autonomy: being able to direct our lives. Need for relationships with people we love. Need for competence: being able to express ourselves in ways we are good at and receiving some recognition from our work. Entrepreneurship can be an act of radical self-care; an opportunity to craft what is in your heart into an income generating opportunity. What can we realistically do? How does this become self-care? We need to learn to listen to ourselves. Related:  Figure out your what. Get crystal clear on the what, then you can figure out the how. Learning your strengths are the ingredients for the how. Believe you are worth discovering yourself. We cannot balance all the things. You cannot give equal time or energy to all the things you do. We need to explore all the hard feelings (like anger, disappointment, sadness) and deal with them before we can truly experience joy and happiness and all the positive things. “Your work should serve your heart.” — Faith Clarke

Dr. Liz Matheis, a clinical psychologist, answers the following questions: What is the difference between stress and anxiety? What does anxiety look like? What can it look like? What's normal and when does anxiety become a problem? What are skills to learn or strategies so I can manage my anxiety better? If I have anxiety, does that mean that I have to see a mental health counselor or take meds? Can my faith help with anxiety? It's so frustrating to hear that I need to pray more and read my Bible.  

Parenting kids with disabilities means parents often times are more involved caretakers, but what if the primary caretaker gets sick? How does a family stay afloat during a medical crisis?

Ellen Stumbo and Erin Loraine chat with Jen Jacob, the Executive Director of the Down Syndrome Diagnosis Network. They discuss what parents need most when their child is diagnosed with a disability, what resources are helpful, and there is life after the diagnosis.

When Kids With Disabilities 'Wander' or'Elope'

Challenges of taking care of our kids. Lack of time to do everything. Learning to say "no." Cutting back where you can.

Surviving the Summer With Kids With Disabilities

Helping Our Children With Learning Disabilities