CDKL5 in Color

Episode 18: What impact does life with CDKL5 have on your family?

It’s June and that means it’s CDKL5 awareness month! We are doing things a little differently on the podcast this month. We are diving into some emotional topics and sharing insights directly from our peer caregivers.

Our children who live with CDKL5 deficiency disorder are so loved, but life with CDKL5 is hard, so join us as we talk about it.

First up, we asked: What impact does life with CDKL5 have on your family?

SHOW NOTES

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Episode 17: Ed’s Life With Haley (age 18)

In this latest episode we introduce you to our children’s grandparents and welcome a well-known CDKL5 grandpa, Ed Fennell. Ed shares some awesome stories about his granddaughter, Haley, particularly about how she communicates and takes the world in. She is a spitfire! Ed has always been her champion and is passionate about finding a way to bring out her voice so that she is more understood in the world.

Ed also shares with us about the AI technology he is trying to advance, exploring how the skills of engineering students, the knowledge of caregivers, and this ever-expanding technology may be able to develop a system to enhance communication for kids like ours. It’s fascinating stuff and if you have questions for Ed, we can get you in touch!

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

MENTIONED IN THE EPISODE:

Voice4PIMD Website

Haley and Poppy Website

Ed's speech at the CDKL5 Patient-Focused Drug Development meeting (2:41:20)

Episode 16: Let’s Talk About Acceptance

Acceptance doesn’t turn on like a light switch. Instead, it's a series of realizations and adjustments we make as we transform our expectations and embrace our reality. It’s a process, and as parent caregivers to our children living with CDKL5 deficiency disorder, we all go through it. In this latest episode, you’ll hear us share personal stories as well as helpful tips and coping strategies that have helped us on our journeys to acceptance.

Embracing community by getting to know others who are also facing this CDKL5 life can be a powerful tool in your journey to acceptance. We’re glad you’re listening!

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

MENTIONED IN THE EPISODE:

• Martin Newey Supporting CDKL5 Website (with exons)

• Wellness Wheel

• Welcome to Holland Poem

RESOURCES:

• How do I find a good therapist?

• Article: Levels of Acceptance in Special Needs Parenting

• Article: Feeling Guilty as a Special Needs Parent

On this episode we welcome Renee who lives with her young family in Colorado. She tells us about the special sibling relationship her children have and we learn all about therapy intensives (and discover Owen’s newfound love of horses!). We also hear Renee’s beautifully peaceful perspective on the rare disease journey and how she finds gratitude in Owen’s story - just as it is written. This gentle and sweet mama is easy to listen to, so enjoy.

“My love for this boy… and just rising every day to meet him where he’s at and love him for exactly who he is and cherish every day I get with him… how lucky are we that he’s ours?” -Renee

Thanks for joining us, Renee!

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

MENTIONED IN THE EPISODE:

• Book: What is Epilepsy?

• NAPA Center - Denver

• Neuroplasticity

• AAC - Augmentative and Alternative Communication

• UDN - Undiagnosed Disease Network

• Mosaicism

• Corpus Callosotomy

• Hippotherapy

Carol-Anne is one of the OG CDKL5 moms! Her daughter, Amber, is nearly 20 years old and Carol-Anne has been on the scene getting involved for CDKL5 even before her daughter was officially diagnosed. She’s co-founder of CDKL5 UK, a professional social worker, and is passionate about supporting families, raising awareness, and challenging assumptions.

In this latest episode, we talk with Carol-Anne about the early days of diagnosis, what transitioning to adulthood has been like and the challenges of navigating social systems in the UK. We also talk about the importance of learning to understand our children’s unique methods of communicating, and how that clarity matters for family quality of life.

Thanks for joining us, Carol-Anne!

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

MENTIONED IN THE EPISODE:

• CDKL5 UK

• CDKL5 Parent Support Group on Facebook

• Chronic Sorrow - Sociologist Simon Olshansky first coined the phrase “chronic sorrow” in 1962. Chronic sorrow is often experienced by parents and caregivers who have a child with a disability. He felt that the grieving did not ever reach a closing point and the intensity could increase during certain stages of that child’s life.

• Billy Adaptive Shoes

• Colin Farrell Opens Up About Son

• Bristol UK CDKL5 Center of Excellence

Episode 13: Let's Talk About Adaptive Clothing

Living the CDKL5 life means all kinds of adaptations and clothing is not an exception! Adaptive clothing can come in quite handy and, fortunately, the options available seem to increase each year! In this latest episode, we share where we like to shop for our kids for things like shoes, bodysuits, and even swimwear. We also talk a bit about how our personal styles have changed since becoming full-time caregivers. We’d love to hear your recommendations too so please share!

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

MENTIONED IN THE EPISODE:

• Adaptive Clothing (definition)

• Target Adaptive

• Billy’s Shoes

• Ava’s Billy’s Boot

• Princepard Shoes

• PLAE Shoes

• Smart Knit Sensory Socks

• Etsy Pocket Blanket for Wheelchair

• Video: How to Change Someone Without Removing Pants

• Kohl’s Adaptive

• SPIO Suit

• Wheelchair Coats

• Ava’s Swimsuit

• Gregory’s Swimsuit

• Reusable Swim Diaper

• Cakes - Bra Alternative

In this latest episode, we reflect on how it’s been going for us at the CDKL5 in Color podcast and what people can expect in our upcoming (first!) newsletter! We are just so touched and proud of the response we’ve had from our CDKL5 community. Be sure to sign up for our newsletter so you get all the info right to your inbox! Sign up here: https://www.cdkl5incolor.com/newsletter-sign-up

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

MENTIONED IN THE EPISODE:

• Read our first newsletter!! https://preview.mailerlite.io/preview/1263075/emails/142798938795149116

• Please follow us on social media and let us know what you want to hear on the show!!

Episode 11: Heather’s Life with Ezra (age 3)

If you are in the early years of parenthood, you can probably relate to Heather. Mom of two littles, one with CDKL5, plus she and her husband are working full-time - life is busy! Ezra lives life in a big way and distinguishing what is CDKL5-related behavior vs typical toddler behavior is complicated for her parents. In this episode you’ll explore Ezra’s challenges with CDKL5 (spoiler, right now it’s not seizures!), her sibling relationship, and the impact special needs parenting has on career, marriage, lifestyle, and more.

“Your child sets the tone. Never give up on your child!” - Heather

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

MENTIONED IN THE EPISODE:

• CDKL5 Sibling Book - message Toasting Tanner

• Seizure Action Plan

• Cortical Visual Impairment (CVI)

• Montessori Bed

• ARK chewies

No one likes being in the hospital, but when your child has a diagnosis of CDKL5 Deficiency Disorder, hospitalizations are a part of life. Some of the most challenging hospitalizations are for respiratory illness. Recently, Marissa was in the hospital for two weeks with her son for the flu. In this episode, hear all about their stay as well as about how we prepare for hospital stays, tips and tricks, a candid discussion about the challenges, and how sometimes life looks different upon discharge.

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

MENTIONED IN THE EPISODE:

• PICU

• Common Respiratory Illnesses

• Pediatric Intubation Video

• Secretions and Suctioning Information

RESOURCES:

• A Tiger Mom’s Guide for Sudden Hospitalization

• How to Pack a Caregiver Ready Bag

Adaptability is the name of the game when you are a parent caregiver to someone living with CDKL5 Deficiency Disorder, especially when you are juggling a professional career.

In this episode we welcome Stephanie, geoscientist, educator, and medical mama to her daughter Isobel. We talk about how caregiving duties and medical needs not only impact employment, but in Stephanie’s case, changed the trajectory of her career.

If you are a working caregiver, you’ll relate to Stephanie’s story for sure. And if you’re not a caregiver, perhaps your eyes will be opened to the challenges your colleagues may be facing behind closed doors.

According to the Family Caregiver Alliance:

• 69% of working caregivers report having to rearrange their work schedule, decrease their hours, or take unpaid leave in order to meet their caregiving responsibilities.

• 39% of caregivers leave their job to have more time to care for a loved one.

Thanks for joining us, Steph!

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

MENTIONED IN THE EPISODE:

• Sleep Safe Bed

• Stephanie’s Research “Creating an Online Community of Support: Mothers of Children with Disabilities Working in the Academy”

• Stephanie’s Research “Caregiving, Disability, and Gender in Academia in the Time of COVID-19”