No one wants to spend the holidays feeling isolated or left out, but the reality for parents of medically complex/disabled children is that we sometimes have to skip events and gatherings for the safety of our kids. On top of that, we’re the ones stuck making the decision whether to stay home or go out, requesting accommodations and assurances to protect our kids, and trying to decipher if we’re “overreacting” out of anxiety or just being reasonably careful.

In today’s episode, Amanda Griffith-Atkins and I discuss how to manage and interpret anxious feelings you might be having around the decision to attend a holiday gathering and how to set realistic parameters to help you make that decision. We also share listener feedback and suggestions about how other parents made their decisions and how to approach uncomfortable conversations you might run into when declining invitations to holiday events.

We’re here to validate whatever decision you make for your family because we know how fraught the process can be, but also how frightening it is to feel like you might put your child in a risky health situation. Whatever you choose, we want to help you do it without guilt and with as little anxiety as possible.

Thank you to all the parents who shared their experiences about making these decisions! You all make this podcast possible!

Links:

Listen to our other episode in this holiday series with Ep 108: Why Holidays Kinda Suck with Amanda Griffith-Atkins.

Check out Ep 81: Health Anxiety which also features Amanda Griffith-Atkins.

Get a copy of Brené Brown’s book “The Gifts of Imperfection.”

Donate to the podcast via Buy Me a Coffee.

Follow Amanda on Instagram.

Follow me on Instagram.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

When you have a child with a disability or other medical complexity, the holidays can feel like a minefield, as trauma triggers, anxiety, and grief for what we wish the holidays could have been for our families lurk around every corner.

And on top of that, having to manage schedules, special diets, gift expectations, and uncomfortable commentary from friends and family can be emotionally and physically draining. The season often leaves parents of disabled children feeling left out, over-worked –and occasionally– like the celebrations might just be more trouble than they’re worth.

In today’s episode, Amanda Griffith-Atkins and I discuss listener feedback and contributions about how complicated the holiday season feels for parents of disabled children, suggestions for how to make the holiday season feel just a little bit more manageable, and how adjusting our expectations has made a big difference for each of our families.

Links:

Listen to Amanda’s previous episodes: Ep 81: Health Anxiety, Ep 85: On the “Disability Parent” Identity, & Ep: 99: Family Planning.

Listen to Ep 20: Anticipatory Grief with Katie Peterson.

Check out Ep 104: How to Support Parents of Disabled Children.

Thank you to our listeners who sent in recordings: Heather, Maddison, and Lysa!

Donate to the podcast via Buy Me a Coffee.

Follow Amanda on Instagram.

Follow me on Instagram.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

Brittany Steitz is back for the Season 6 finale! For the first time ever, every episode in this season was sponsored, which meant that we were able to grow our team and I was able to branch out creatively to bring you an even better podcast episode each and every week. This episode was so fun as we reflected on how the podcast has grown this last season.

In this episode, we listen to a short clip featuring snippets from every episode in Season 6. Then we’ve got three recorded voice messages from listeners where we get to relive our favorite parts of the season. Toward the end of the episode, Brittany and I recap some fun behind-the-scenes updates and how it’s been working with sponsors including this amazing community who sponsored the last two episodes this season! And finally, we’re sharing how I’ve changed up The Rare Life’s upcoming “off-season.”

I can’t wait for you to hear this episode, and I’m so grateful to have shared another season of The Rare Life with you. See you next season!

Links:

Listen to the episodes that you, as a community, sponsored: Ep 105: Brianna’s Story & Ep 106: Respecting Our NonSpeaking Children

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

Favorite episode of Madhura & Alyssa - Ep 100: Raising Awareness

Favorite episode of Kahrissa - Ep 94: Family + Friends w/ Chelsea Denham and Ep 95: Parable of the Pain Scale

Follow each of us on Instagram! Me, Brittany, Kahrissa, Madhura, & Alyssa!

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

I think most of us have a vision of what our relationship with our children might look like when we first step into parenthood. We know what we want our kids to experience, how we hope to interact with them, and how we want to communicate with them to build a strong bond.

But, as parents of children with disabilities, we also know that these visions don’t always play out. In the case of nonverbal children, we have to learn how to use communication devices and become incredibly attuned to body language instead of having the verbal conversations we might be used to. It doesn’t change our hopes for our relationship with our children, but it does affect the way we communicate and build that bond with them.

In this special topic episode, Brianna Christian shares how she celebrates her son Isaac’s ability to communicate in his own unique way. She talks about all the ways she can see him growing and developing his personality even though he doesn’t meet “milestones” prescribed by the typical medical community. At the same time, she acknowledges the difficulty that her son faces when he has trouble expressing himself to others, and the frustration of trying to teach others to read his body language and understand his communication skills and respect his intellectual capabilities.

Through it all, Brianna’s main goal is to always honor and respect her son and the many complex feelings that he has as a three-year-old, even if the way he communicates looks unfamiliar to most. Allowing him to feel his feelings and letting Isaac guide Brianna about his needs has only strengthened the bond between the two of them.

Links:

Listen to Ep 105: Brianna’s Story.

Donate to the podcast via Buy Me a Coffee.

Follow Brianna on Instagram.

Follow me on Instagram.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And thank you so much to our sponsor for this episode, Miranda Dobrowolski!

After struggling with fertility issues for years, Brianna was overjoyed to finally be pregnant, carry the pregnancy to term, and bring home her sweet baby Isaac. As a nurse herself, she understood the risks and complications and possibilities for things that could go awry, but there were never any indications during birth or pregnancy that something was amiss with her son’s health until several months after he was born.

After months of consultations, monitoring, blame from medical staff, and confusion, Brianna and her family were finally given a diagnosis for Isaac that had the potential to change the way they planned for their future family.

In this episode, Brianna tells us what it was like to feel like to have the sense that she was just missing something around her son’s health, especially after such a “perfect” pregnancy and delivery and the difficult journey to receiving his diagnosis.

Links:

Listen to Ep. 77: Wendy’s story.

Listen to Ep 99 on family planning after having a child with medical complexities.

Donate to the podcast via Buy Me a Coffee.

Follow Brianna on Instagram.

Follow me on Instagram.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

Having a child with a disability or rare disease can be a lonely experience, often in ways that parents never anticipated. Their lives have changed dramatically and the relationships they used to rely on might feel suddenly distant.

Family and friends may want to reach out, but they don’t always know how to offer the support that is most helpful for parents. Their “encouraging” comments sometimes miss the mark and can cause even more heartache for the parents they are trying to help. Or, they might be so at a loss for how to offer support that they just stay away altogether.

It’s easy to find lists of things not to say and not to do for parents caring for children with rare diseases, but what about the ways that family and friends CAN offer support?

In this solo episode, Madeline shares suggestions from listeners about the kind of support they want from those close to them as they care for their children with disabilities. Parents of children with medical complexities need —and want— their people to stay in their lives, and these tips can help strengthen these relationships.

Links:

A big, big thank you to everyone who contributed thoughts and suggestions to this episode:

Like so many of you, I worry about how to teach my son with disabilities to fully love and embrace all of himself—including and especially his disabilities that set him apart from his non-disabled peers.

And I believe it starts with us. We need to accept and love our bodies exactly as they are—even the parts we think are not worthy of being seen. We need to model body image resilience for our children.

In this episode, Dr. Lexie Kite, a leading expert in the field of body image resilience, shares ways that we can shift how we view and speak about our bodies in order to influence the ways our children view their own bodies.

Links:

Check out our lovely sponsor Bitsy Atwold Teaching Tools (Use code RARE10 to receive 10% off!)

Follow Bitsy Atwold on Instagram.

Purchase a copy of More Than a Body by Lexie and Lindsay Kite.

Access the audio versionof More Than a Body by Lexie and Lindsay Kite.

Follow Lexie and Lindsay Kite on Instagram.

Follow me on Instagram and enter the giveaway.

When Tiffany’s husband filed for divorce, she was 32 weeks pregnant with their daughter Aiyana they weren’t sure would survive to birth because of her diagnosis of trisomy 18.

In this episode, she shares what it was like to navigate the following year inpatient at the hospital, co-parenting with a man she had very mixed feelings about. She also talks about what it was like to be discharged from the hospital with two daughters to care for without a house or job to go home to, and the ways she’s whittled time for self-care when everything is on her shoulders alone.

Links:

Functional Formularies (our awesome sponsor!):

Follow this link to check out Functional Formularies’ products and to receive 10% off your purchase. (Use code “rare10” if there are issues with the discount being applied)

Use this link for your clinician to request a free sample of Functional Formularies.

Follow Functional Formularieson Instagram.

Follow Functional Formularieson Facebook and join the giveaway this weekend!

Follow Tiffanyon Instagram.

Follow me on Instagram.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Donate to the podcast via Buy Me a Coffee.

Check out our affiliate BetterHelp for online licensed therapy and receive 10% off.

When Tiffany was told her unborn daughter was “incompatible with life” because of her trisomy 18/Edward Syndrome diagnosis, she was immediately pressured to terminate. After deciding to continue her pregnancy, Aiyana was born alive—beating the odds. And because of the T18 diagnosis, doctors refused to give her the life-saving procedures she needed. Tiffany then changed her care, in favor of a doctor who agreed to give her the procedure and save her life.

In this episode, Tiffany tells what it's been like to have to fight for her daughter to receive needed medical care. She also shares what it was like to go through a divorce in the weeks leading up to and following Aiyana’s chaotic birth, and ways she has learned to surrender the illusion of control.

Links:

Functional Formularies (our awesome sponsor!):

     Follow this link to check out Functional Formularies’ products and to receive 10% off your purchase. (Use code “rare10” if there are issues with the discount            being applied)

     Use this link for your clinician to request a free sample of Functional Formularies.

     Follow Functional Formularieson Instagram and join the giveaway!

     Follow Functional Formularieson Facebook.

     Read about the Boston Children’s study about blenderized diets.

Follow Tiffany on Instagram.

Follow me on Instagram.

Check out adorable photos of Tiffany + fam on the website.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Donate to the podcast via Buy Me a Coffee.

Check out our affiliate BetterHelp for online licensed therapy.

So often, we feel that as parents, we need to be raising awareness about issues relating to disability. Maybe we’re sharing our lives on social media in an effort to show that our child really isn’t that different from the next and deserves inclusion. Or perhaps we’re teaching about the importance of being an organ donor because our child wouldn’t be here today without generous donors. Or maybe we’re shouting the symptoms and definition of our child’s rare syndrome in the hopes that they’ll finally get the funding needed to research a cure.

There are many causes to fight for and many reasons for doing so. But it’s important to remember that we are not obligated to raise awareness about anything. Becoming a parent to a child with a disability does not require it.

In this episode, I invite parents to evaluate their cause and their “why” against the question: “is this serving me? Is it serving my child?” Because at the end of the day, that’s what really matters.

Links:

Children’s book What Happened to You? by James Catchpole

Demystifying Disabilityby Emily Ladau

Ep. 85 w/ Emily Ladau and Amanda Griffith-Atkins

Ep. 23: Disability Advocacy w/ Jenny McLelland

Follow me on Instagam.

Disabled adults on Instagram whom I love learning from:

cathyreaywrites

EmilyLadau

Sitting_Pretty

DisabilityReframed

TheCatchpoles

Wheelchair_Rapunzel

Wheel.Life.in.the.Wheel.World

Nina_Tame