Embracing Holland

We are still here, and we have both missed you all.  

Christina Adams, journalist, writer, disability advocate, and camel milk investigator, shares with us her powerful early intervention story of her son with autism and how she was able to help him through diet and camels. She outlines what she calls her “crazy camel journey” and how her research and travels to Isreal took her to a place of healing. She shares her website with us as a resource that details how camel’s milk can help several conditions, from allergies and gut issues to neurodevelopmental issues. Join us as we learn about the amazing qualities of camels and how their milk can be a part of your healing journey! 

Join us as we talk to Hannah Lowe, founder of the L-CMD Foundation and mother to Austin, who has LMNA-related congenital muscular dystrophy. Like many rare disease families we've talked to, her son's condition was caused by a random genetic mutation. There is no treatment or cure, and given how rare it is, they are unsure about his prognosis or life expectancy, making the mission even more urgent. The L-CMD Foundation she started inspires hope for a stronger tomorrow by seeking treatments and, ultimately, a cure. We talk about balancing grief with action, and Hannah exemplifies this in her graceful and determined approach to saving her son. 

If you’ve ever worried about what adulthood might look like after high school or you’ve ever been inspired to create a meaningful space for your child to spend adulthood, tune in to our interview with critically acclaimed author, Cammie McGovern. 

Cammie McGovern was awarded a creative writing fellowship at Stanford University, and has received numerous prizes for her short fiction. Her stories have appeared in many magazines including Glamour, Ladies Home Journal, Redbook and Seventeen , and she is the author of another novel, The Art of Seeing. She lives in Amherst, Massachusetts with her husband and three children, the eldest of whom is autistic. She is one of the founders of Whole Children, a resource center that runs after-school classes and programs for children with special needs.

This week we chat with Leylani Cardoso, warrior parent, and mother of Sophia, her daughter with Down Syndrome. Leylani and her family helped Sophia bring her passion for food and entertaining to life by creating the YouTube Channel Cheeky Sassy Me

For this episode, we share with you another Maryland parent and fellow autism mom, Lia McCabe, who started AutismWish.org which seeks to fulfill the wish lists of families across the country without all of the red tape of government programs. She and her husband also host a podcast called Embracing Autism, which is child focus and helps parents to understand and embrace their neurodiverse children. Give it a listen, follow, and subscribe to support their mission of helping families in the face of fear and the unknown. 

We talk about:

Neurodivergent parenting

Empathizing with sensory needs

The formation of Autism Wish and the Embracing Autism Podcast

Accepting behaviors that are harmless

How IQ testing is not designed for children who are non-verbal

Maintaining a positive perspective

Growing to understand that a diagnosis doesn't mean future dreams are gone

Lia’s website

Autism Wish

Autism Wish Facebook Page

Lia’s Recommended Books

More Than Words: A Parents Guide to Building Interaction and Language Skills for Children with Autism Spectrum Disorder or Social Communication Difficulties by Fern Sussman

The Reason I Jump by Naoki Higashida

Other books mentioned

Autism Breakthrough by Raun K. Kaufman

An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate and Learn by Sally Rogers

This episode is all about taking care of the caregiver. Rory Lawrence, mother of a child with complex medical needs and staff member with David’s Refuge, talks with us about the organization she works for that pours into parents turned caregivers, and how she and her husband have found meaningful respite. We also talk about practical ways to weave in self-care that don’t require a sitter but can actually make a difference. 

Links

Sensory Pathway Booklet

The Intentional Family:  Simple Rituals to Strengthen Family Ties

Mae Bae Fan Club - Unique Apparel for Special Kids and Those Who Care for Them

David's Refuge

Rory’s Email - rorylawrence@davidsrefuge.org 

David's Refuge Private Facebook Page

Despite ending the year on a turbulent note for our families, we are ending season two of the podcast with our awesome finds that brought us joy this year! We share with you gift ideas, sanity savers and problem solvers that we hope will bring a little joy and make your life a tad easier. 

Best wishes for a healthy, uneventful holiday season free from meltdowns and a bright new year sans trips to the ER and calls from your child’s school! 

XO XO

Angie & Meg

NillyNoggin Caps - To Improve the EEG Experience

Compression Sheet

Buzzy Personal Vibrating Ice Pack for painless injections

Therapy Sensory Silk Swing

Hand Tally Counter - Best Fidget Ever! 

Movement Sensory Sox 

Aromatherapy Essential Oil Diffuser Necklace

Hex Lights 

Curtain String Lights

Floor Lamp

Plant Therapy Kid Safe Oils - Tummy All Better

Migraine Stick

Sonic Bomb Alarm Clock and Bed Shaker

The Libby App - listen to books for free!

Books Angie loved this year

Beach Read by Emily Henry

People We Meet on Vacation by Emily Henry

Giver of Stars by Jojo Moyes  

The Midnight Library by Matt Haig

The Body: A Guide for Occupants by Bill Bryson

Malibu Rising by Taylor Jenkins Reid 

Books Angie didn’t love, but a lot of other people did, so you might!

The Grace Year by Kim Liggett  

Untamed by Glennon Doyle

90 degree Lightning Cable

90 degree USB Type C Cable

90 degree Micro USB Cable

And if you can only read one book, read this one - Underestimated - An Autism Miracle by J.B Handley and Jamison Handley

In case you’re interested, here’s more info on Spelling to Communicate

Chore Slap Bracelets

Family Devotional - Angie’s weekly ritual and current version of Sunday worship

Foundations - 12 Biblical Truths to Shape a Family

Zenni Optical Affordable Glasses

Hatch Baby Rest Sound Machine - Not the Nest - that's an entirely different device we also love

Microwave Omelet Maker

 Microwave Egg Poacher

 Microwave Cookware Set

Olive and June - The Winter Collection 

YUMILashes Keratin Lash Lift

TUSHY Classic Bidet

Sleep Training Clock

 Gel Nail Polish Set

 Bidet

Have you ever seen the meme about a special needs parent who fell in a hole? Well, that's where Meg and I find ourselves. When we started this podcast journey our mission was to highlight families with disabilities doing innovative things but to also share the reality of the ups and downs of raising children with disabilities, so this episode is a life update and a peek into where we are in the metaphorical Holland. We hope this brings someone some comfort who may also be in a hole.

We continued our chat about smearing with our guest, Jennifer Sheppard, who created an adaptive clothing line out of a dire need for an alternative to wet suits for her own son who struggles with the behavior. We also shared a bit more of our chat with Genevieve, and our own lessons learned from dealing with poo. 

We talk about:

• How we've become desensitized
• What we've found to be helpful in the aftermath
• Ways to clean up the mess
• Specific products and strategies that have been helpful
• Finding adaptive clothing solutions for when you can’t watch your child 24/7

Jennifer’s Adaptive Clothing Line - The Wild End of the Spectrum

Life on the Wilder End of the Spectrum 

FB page - The Wilder End of the Spectrum 

Products We Reference (not sponsored or affiliate links, just products we’ve purchased and found helpful)

Ruggable - Washable Rugs

Clorox Healthcare Hydrogen Peroxide Cleaners

Bissell Pro Heat Pet Carpet Cleaner

Book

What to Do about Smearing

Fecal smearing and ingesting are taboo topics that often elicit a considerable amount of shame for families. We felt like it was time to give this topic some attention to those who are struggling in the dark and aren't comfortable reaching out for suggestions in the online support groups. In response to very little information openly available to families struggling with smearing and consuming feces (scatolia and coprophagia), Genevieve Engleman, The Remote OT, shares with us the background behind the behavior, information to reduce the stigma, and ways we can try to prevent and address this issue.  

We talk about:

• Why mammals may consume their own feces
• History and incidence of these behaviors
• Reducing the stigma and shame associated
• What the behavior may be communicating
• How to address any potential medical problems that could lead to these behaviors
• What do do if and when it happens
• Ways to use OT, and sensory play to meet the needs currently served by poop play

Genevieve’s Website

The Remote OT

This week we chat with Joya Van Der Laan, a functional medicine family nurse practitioner whose curiosity and her own daughter’s autism diagnosis lead her down the biomedical path. We learn how she has used her personal and professional experience to create videos to teach parents how to create their own autism game plan, focused on helping parents address common symptoms and challenges associated with an autism diagnosis. Her videos cover everything from sleep, meltdowns, constipation and seizures to PANS and PANDAS. Tune in to learn about Joya and how her website could help your family!

We talk about:

• How overwhelming it was to face an autism diagnosis even as a medical professional
• Feeling the pressure to “fix” her child
• Using functional medicine to find the root cause of symptoms
• Deciphering between “voodoo” and science
• Creating a resource to quell the overwhelm and ease the burden on parents 
• Testing to determine deficiencies and starting with basics like diet
• The importance of sleep for everyone!
• Healing is an artform not an end game
• Watching other children improve while her daughter struggled which led to learning
• How the desperation to help our kids can sometimes cloud our judgement with interventions
• Being methodical with trying new things to determine what’s working and what’s not
• How functional medicine can help parents too!

Joya’s Website

Your Autism Game Plan

Books

How to End the Autism Epidemic

The Explosive Child

The Autism Revolution

Healing the New Childhood Epidemics - Autism, ADHD, Asthma and Allergies

Nutrient Power

Doctors to follow

Dr. Mark Hyman

Dr. Jeffrey Bland

For this episode we speak with Megan Martin, personal trainer, health coach and purveyor of holistic wellness who used lessons learned from her own health journey to help her son with autism. She shares with us what the biomedical approach means and how she used it to address her son’s symptoms, including how she did an at home fecal transplant. 

We talk about:

• Personal illness and disease that led to path of holistic healing
• Exploring functional medicine
• Lifestyle factors and diet being the foundation for disease prevention and treatment
• Supporting the entire body to help with brain function
• Addressing GI dysfunction as not just another symptom of autism
• Using diet to address autism symptoms, including eczema 
• Naturopathic doctors and what they do
• All about fecal microbiota transplants (currently only FDA approved for C-Diff but many clinical trials in patients with autism)
• Using the AMD Ion Cleanse foot bath for detox and she get her son to sit still
• Other alternative treatments to try

Links

Autism Research Institute - Gi webinar 

Arizona State University Uses Bacteria to Improve Autism Symptoms 

Stanford University - Microbiome studies

AMD - Ion Cleanse

The Autism Community in Action

Recovering Kids Facebook Group

Detoxing Kids - A Parent Guide to Safe Metal Detox

Autism Effective Biomedical Treatments: Have We Done Everything We Can?

ATEC - Autism Treatment Evaluation Checklist

Personalized Vitamins and Minerals

Does the thought of traveling with your children and family members with disabilities and complex medical needs intimidate you and make you shy away from leaving the house? This is the episode for you! Join our friend of the show and fellow complex medical needs mom Kristy Kargel, as we chat about how to navigate airports, long trips, and making it from point A to point B without excessive stress. 

We talk about:

• Finding accessible changing facilities
• Bringing medically necessary items as carry-on items
• Calling the airline two weeks prior to discuss specific travel needs
• Renting a modified van
• Writing into a waiver plan to justify funds to be utilized to cover travel needs
• Shipping supplies ahead of time from a durable medical equipment provider
• Pre-ordering groceries and having them delivered to your destination
• Renting a shower care
• Packing day by day for items necessary for each day
• Providing packets and information for fellow passengers
• Boarding the plane
• FAA approved seat harness available to keep passengers upright
• Noise-canceling headphones (for kids & adults)
• Video and photo social stories
• Bathroom locator apps for accessible restrooms
• The courage to give it a go
• Bed tents
• Free passes to national and state parks
• Beach wheelchairs
• Drive through zoos and safaris
• Accessible parking passes
• Easing into traveling and prepping the whole family
• Lowering expectations

Links

TSA Cares

Mamava

Accessible Travel in Florida 

FAA Approved Harness

Autism on the Seas (For autism, Down syndrome and other disabilities) 

Best Bathroom Locator Apps

Best Autism Bed Tents

Wheelchair Friendly Lodging in National Parks 

FREE Lifetime Pass for National Parks 

Facebook page for travel tips 

Great travel tips for wheelchair users

Andrea Faris Roberts, renaissance woman, innkeeper, two-time non-profit starter, and mother of two children, including a son with Down syndrome. She graciously invited us to her flagship inn called the Terrace Guest House to tell us the story of its inception and discuss the importance of getting away. Join us as we discover how she created a beautiful way for parents and caregivers to experience true rest, what it took to create multiple sanctuaries for parents to recharge and how important it is to put ourselves on our own to-do list. #getinthecar

We talk about:

• The deep need for sleep
• Creating an organization from personal pain
• Reece’s Rainbow - international adoptions for children with Down syndrome and other disabilities
• The significant impact of caregiving and the unmet need for rest
• Creating a network of partner Inns (B&Bs) to serve families (40+)
• Curating the nation’s first year-round respite inn
• The unique thing about this sanctuary experience that meets unrealized needs
• Recuperative rest, not a vacation
• Putting yourself on your own to-do list
• Wishing that our kids didn’t have to struggle
• The trauma and challenges of raising a child with a disability
• Not “Embracing Holland” 
• Her annual “Mommy & Me” trip for parents to get away with their child without a disability, or their own mom, or other special needs mom friend, or by yourself
• Andrea’s advice for new parents

Links

Links

A Mother's Rest

Angie's Blog Post About Staying at the Inn 

Brick Fundraiser 

Give Monthly to Help Keep A Mother's Rest Open

Social Media

FB - A Mother's Rest - public page 

Shelley Kramm went from designer to special needs mom, to advocate then to non profit organization founder, then blogger, and she shares with us how she made her way through each of those roles as she focused on inclusive play and empowering women. 

We talk about:

• Finding out her daughter has cerebral palsy
• Her transformation from mom to special needs mom
• Discovering the need for inclusive play spaces
• Putting her landscape design and architecture degree to use
• Deciding to start a non profit so all kids could have a place to play
• Making the connections to make her dream a reality
• Raising a million dollars for her park
• The birth of Hadley’s Park
• How over 50 parks were built in the mid atlantic area to serve everyone
• What exactly an inclusive park is and how it caters to all, no matter the disability
• Pivoting from one organization to another project, The DC Ladies
• Deriving joy from empowering women
• The shock of becoming a single parent
• Creating an online community for special needs moms

Links

Shane's Inspiration - Inclusive Play

Becoming Shelley

Washington Post Article - A Playground for Hadley

I am Able - How Sarah Kramm advocated for her sister

Social Media

IG - @SEKramm

FB - Becoming Shelley

Hadley’s Park - Facebook Page

Special Needs Moms of Montgomery County - Facebook Page

Special Needs Moms of Montgomery County - Private Facebook Page

Jackie Buzek, rare disease mom, doctorate level BCBA, and executive director of the Rise School Of Denver wrote a piece for the Mighty about her follow up on Welcome to Holland, where she shares what life has been like for her in this new, foreign land, so we knew that we just had to have her on the podcast! Join us as we find out how reframing our perspective can help us enjoy Holland! 

We talk about:

• Getting a rare diagnosis shortly after the birth of her first child
• What it’s like embark on the journey to Holland after spending a career serving others already there
• Cri du Chat, “cats cry syndrome”
• Finding your people, even if it’s on social media through a hashtag
• Being taught how strong you can be
• The transition from grief to loving Holland
• Surviving the turbulent entry into motherhood
• Writing as a therapeutic outlet to process big feelings
• Living in the moment
• Reframing difficult situations as opportunities to learn

Links

Website - A Different Us

Our Follow Up on Welcome to Holland - MIGHTY article

Social Media

IG - @jackiebuzek

Bekah Bowman, mother, and author with a heart for ministry shares with us what it looks like to do the hard work of stepping into the church community to show them how to love kids with disabilities and to see the incredible gifts God has given them. Bekah continually points to joy in the middle of suffering and discusses how they are often roommates. 

We talk about:

• How her world was rocked upon the discovery of her children’s rare disease
• Raising two children with Batten disease, a rare degenerative disorder
• Treatment for her son Ely while grieving the loss of Titus
• The freedom in finding others that understand
• Church life and disability life being at odds with one another
• How people with disabilities belong in church and the body is not complete without them
• Watching her boys teach people things about God that they would have never learned
• Having a painful experience at church and seeking a new church home
• Asking a new church for what she needed
• How healing it is to attend church when the entire family is loved and cared for
• The weakest parts of the church are the most valuable
• Joni and Friends Ministry
• Her book, “Can’t Steal My Joy: A Journey to a Different Kind of Brave”

Links

Website - Bekah Bowman

Joni and Friends 

Bekah’s Book

Room For More Ministry - Coming soon!

Social Media

FB - @Team4TitusEly

IG - @bekahsbowman, @roomformoreministry

Related Episodes

Take Me to Church

Groomed for This with Eva Queen

This week we chat with Kalani Brown, mother of a son with Down syndrome and chair of the Maryland Developmental Disabilities Council, among many other roles. She shares with us the importance of inclusion and raising expectations for people with developmental disabilities.

We talk about:

• Receiving a down syndrome diagnosis and discovering support
• Navigating public school to find the balance of support and inclusion
• Shifting the idea that children are “suffering” from Down syndrome
• Launching into advocacy by serving in the community
• How Montessori concepts are designed for children with learning differences
• Changing the narrative about people with developmental disabilities
• Setting high expectations and following the child’s lead

Links

Maryland Developmental Disabilities Council

State Developmental Disabilities Council

Down Syndrome Diagnosis Network

National Down Syndrome Society

National Down Syndrome Congress

Local and National Down Syndrome Support Networks

Down Syndrome publications

Sting Sings Uplifting, Original Tune for World Down Syndrome Day

Books

• Gifts:  Mothers Reflect on How Children with Down Syndrome Enrich Their Lives – Kathryn Lynard
• Gifts 2:  How People with Down Syndrome Enrich the World- - Kathryn Lynard
• Whole Child Reading:  A quick-Start Guide to Teaching Students with Down Syndrome and Other Developmental Delays -  Nathalie Hale
• Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don’t React Method – David Stein

This week we chat with Dee Sapp, Executive Director of Accessibility Bridge Corporation, mother of three including an olympic swimmer with an intellectual disability. Dee shares with us how her passion for community inclusion lead to great things for her son and to the birth of an organization that serves to encourage people with all disabilities to integrate into the larger society and connect them with resources. 

We talk about:

• Raising a son who is a competitive athlete with an intellectual disability
• Getting a proper, accurate diagnosis before the age of 18 to get appropriate services
• How support decreased after elementary school
• Pushing for inclusion in order to have success
• Getting the IEP team to think outside the box
• Exploring college options for students with intellectual disabilities
• Discovering the Think College resource
• Building the college wish list: social inclusion, academic inclusion, competitive sports
• Finding recognized and accredited programs
• Switching from public school to home school to prepare for college
• Creating a movement to rethink what people with disabilities can do
• Company programs targeted for people with disabilities 
• Redefining the end goal, and thinking beyond graduating from high school

Links

Accessibility Bridge Corporation

Think College

Think College Documentary