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!

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

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 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

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.

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.

In this episode, we chat with teacher, Maura Moore, cheerleader of her students, encourager of those in her life, and developer of the Meep! Maura shares with us her vision to help those who are struggling and ways we can help too! We talk about: Using creativity and crafting to support othersThe creation of emotional support orbsHelping others who are dealing with heavy thingsCreating and fueling a movementA creative way to connect during the pandemic Links All You Meep is Love All You Meep Is Love Facebook Page Meg's Favorite Cheap Crochet Hooks

In this episode, we chat with Aimee Darby, founder of the Eliza Hope Foundation.  We talk about: Recognizing and savoring the important moments The devastation that is losing a childThe remarkable way that Aimee has turned her grief into actionA foundation built to nurture families running to multiple therapies Her come one, come all concept that serves all levels of functioningEquipping families while they are dealing with a new diagnosisPassing it on when its incredibly difficult to do soEliza's purposes and the lessons taught in her four and a half years hereThe ability to celebrate other’s successes The critical importance of saying their name, and allowing their memory to live on Related episodes Seizing Joy and Grace with Tracy Umezu Links The Eliza Hope Foundation The Pinecone Collection Custom jewelry with all proceeds benefiting The Eliza Hope Foundation:    Holland  A blog post that Aimee wrote a month before Eliza passed Eliza Hope Aimee’s first blog post after Eliza’s passing

In this episode, we chat with Lauren Shillinger, a fierce advocate for her children and the passage of Brynleigh’s Act for Seizure Safe Schools.  We talk about: Finding a cause of her daughter’s epilepsyTuberous Sclerosis Complex (TSC)Traveling to Texas for brain surgeryLearning to navigate the systemTurning grief and energy toward rare disease advocacyThe TS Alliance and her work with the Maryland chapterBrynleigh’s Act for Seizure Safe SchoolsWays to introduce legislationGiving back and finding hopeThe joy found in paying it forward Related episodes Families That Advocate Together Stay Together with Laura Hatcher Changing Spaces and Creating Hope with Christina Abernethy Links Maryland General Assembly - HB370 Maryland General Assembly - SB225  Find your Maryland Representatives Kindness is Golden book Amanda Gorman, Youth Poet Laureate, has speech and auditory processing issues Low Intensity Support Services - LISS

In this episode, we explore what it’s like to raise a child with Aspergers to be as independent as possible, and how to advocate for and alongside them. Carol is an internal medicine physician who has a specialty practice in non surgical cosmetic procedures. She’s also the host of the Autism Mom MD Podcast, and an amazing advocate for her children and others!  We talk about: Raising a son with AspergersFinding the right kind of support for your childLearning how to motivate and encourage with the goal of independenceNavigating driving, medical appointments, college and employmentRaising expectations and setting the bar highDeconstructing and teaching independence skillsEncouraging self-advocacyPartners in Policymaking Starting a podcastCreating communityBeing an innovator, she is the creator of TheraPearls!Creating space for yourself and your marriage Related episodes Others who have completed Maryland’s Partners in Policymaking program Families That Advocate Together Stay Together with Laura Hatcher An Alternative Approach with Diana Wingate-Gaiser The World According to Jake's Mom with Jenn Lynn Groomed for This with Eva Queen Take Me to Church (Stephanie Watkins) Guests who have completed PA’s Partners program Ausome Advocate and Author Catherine Hughes Changing Spaces and Creating Hope with Christina Abernethy Links Autism Mom MD Podcast Maryland Partners in Policy Making Program Life 360 - Family Locator and GPS Tracker Maryland internist finds inspiration in her grocer's freezer Ark Therapeutic Lip Blok Mouthpiece Kids Slurp Straw 9 Pack Stackable Stainless Steel Kids Cups for Toddlers

In celebration of International SCN2A Awareness Day on February 24th, we explore how SCN2A, a rare genetic disease, impacts each child. You’ll hear from four moms with four very different children. They will show us what life has looked like for them since their diagnosis and what they are doing as a result of knowing the genetic cause for their children’s medical conditions.  A BIG thank you to the four parents who shared their voices and stories for this episode. Katie Loosley Nikki BeasleyJenna PuteriKris Ray Other episodes from SCN2A parents Seizing Joy and Grace with Tracy Umezu Growing a Family Gratefully with Rachael Lividini A Dad's Eye View  The Art of Supporting the Special Needs Mom Links FamilieSCN2A Foundation FamilieSCN2A Global Support Group SCN2A Related Autism & Epilepsy: The FamilieSCN2a Foundation SCN2A Australia SCN2A Insights Podcast SCN2A Families UK - FB page SCN2A Europe Simon Searchlight - SCN2A (Research) SPARK for Autism - SCN2A A Walk with Jo Facebook Page Eye Gaze - Think Smart Box Look to Learn - Activities for Eye Gaze Children’s Hospital of Philadelphia - Dr. Ingo Helbig Children’s Mercy - Dr. Coffman

During this episode, we chat with April Green, author, special educator, minister, and collaborator about raising three children on the autism spectrum and what has risen out of her family’s challenges. She shares the importance of storytelling and how we can tell our own stories. We talk about: Parenting multiple children with autism that vary in presentationReckoning with the perception of autism Looking at the total child when making decisionsEncountering obstacles with the IEP team as a special educator  Battling the school system to advocate for a diagnosisAcknowledging and accepting the call to ministryExperiencing church as a family with multiple disabilities and needsBeing bold to share storiesLetting it out and letting it flowPath to her book collaborations and how she’s helped others tell their stories Links Books It’s Going to Be Aulright Autism Relationships Matter Social Media April Green Facebook Page April Green Instagram Podcast Keeping it Moving with April and Vondell Related Episodes Ausome Author and Advocate with Catherine Hughes Take Me to Church

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 disabilityGetting a proper, accurate diagnosis before the age of 18 to get appropriate servicesHow support decreased after elementary schoolPushing for inclusion in order to have successGetting the IEP team to think outside the boxExploring college options for students with intellectual disabilitiesDiscovering the Think College resourceBuilding the college wish list: social inclusion, academic inclusion, competitive sportsFinding recognized and accredited programsSwitching from public school to home school to prepare for collegeCreating a movement to rethink what people with disabilities can doCompany 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

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 supportNavigating public school to find the balance of support and inclusionShifting the idea that children are “suffering” from Down syndromeLaunching into advocacy by serving in the communityHow Montessori concepts are designed for children with learning differencesChanging the narrative about people with developmental disabilitiesSetting 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 LynardGifts 2:  How People with Down Syndrome Enrich the World- - Kathryn LynardWhole Child Reading:  A quick-Start Guide to Teaching Students with Down Syndrome and Other Developmental Delays -  Nathalie HaleSupporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don’t React Method – David Stein

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 diseaseRaising two children with Batten disease, a rare degenerative disorderTreatment for her son Ely while grieving the loss of TitusThe freedom in finding others that understandChurch life and disability life being at odds with one anotherHow people with disabilities belong in church and the body is not complete without themWatching her boys teach people things about God that they would have never learnedHaving a painful experience at church and seeking a new church homeAsking a new church for what she neededHow healing it is to attend church when the entire family is loved and cared forThe weakest parts of the church are the most valuableJoni and Friends MinistryHer 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

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 childWhat it’s like embark on the journey to Holland after spending a career serving others already thereCri du Chat, “cats cry syndrome”Finding your people, even if it’s on social media through a hashtagBeing taught how strong you can beThe transition from grief to loving HollandSurviving the turbulent entry into motherhoodWriting as a therapeutic outlet to process big feelingsLiving in the momentReframing difficult situations as opportunities to learn Links Website - A Different Us Our Follow Up on Welcome to Holland - MIGHTY article Social Media IG - @jackiebuzek

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 palsyHer transformation from mom to special needs momDiscovering the need for inclusive play spacesPutting her landscape design and architecture degree to useDeciding to start a non profit so all kids could have a place to playMaking the connections to make her dream a realityRaising a million dollars for her parkThe birth of Hadley’s ParkHow over 50 parks were built in the mid atlantic area to serve everyoneWhat exactly an inclusive park is and how it caters to all, no matter the disabilityPivoting from one organization to another project, The DC LadiesDeriving joy from empowering womenThe shock of becoming a single parentCreating 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

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 sleepCreating an organization from personal painReece’s Rainbow - international adoptions for children with Down syndrome and other disabilitiesThe significant impact of caregiving and the unmet need for restCreating a network of partner Inns (B&Bs) to serve families (40+)Curating the nation’s first year-round respite innThe unique thing about this sanctuary experience that meets unrealized needsRecuperative rest, not a vacationPutting yourself on your own to-do listWishing that our kids didn’t have to struggleThe trauma and challenges of raising a child with a disabilityNot “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 yourselfAndrea’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

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 facilitiesBringing medically necessary items as carry-on itemsCalling the airline two weeks prior to discuss specific travel needsRenting a modified vanWriting into a waiver plan to justify funds to be utilized to cover travel needsShipping supplies ahead of time from a durable medical equipment providerPre-ordering groceries and having them delivered to your destinationRenting a shower carePacking day by day for items necessary for each dayProviding packets and information for fellow passengersBoarding the planeFAA approved seat harness available to keep passengers uprightNoise-canceling headphones (for kids & adults)Video and photo social storiesBathroom locator apps for accessible restroomsThe courage to give it a goBed tentsFree passes to national and state parksBeach wheelchairsDrive through zoos and safarisAccessible parking passesEasing into traveling and prepping the whole familyLowering 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