The Hou To Guide: Recent Episodes
Katie and James Hou
The Hou To Guide is both a podcast and blog that focuses on everyday life, travel, and accessibility. With the main focus on how to live a life you love when someone you love has a disability. Inspired by our own journey becoming parents to a special needs child, we strive to be a resource in a barrage of information that can be difficult to wade through. We will offer advice, what has worked for us and is working for us, as well as feature other families and experts. We will also document our everyday lives and discuss both the challenges, changes, and surprises we experience as a family of 6. We also want to highlight both local and larger travel, with a focus on national parks within the United States.
In this week's episode, we learn more about Selective Dorsal Rhizotomy by speaking with Shannon Kulesa, the mother of Jake.
Jake is a twin, born early and with cerebral palsy. Shannon and I discuss Jake's SDR journey, how she found out about the surgery, the decision-making process, how they chose a hospital and provider, and what Jake's life is like now.
This week we learn all about Cerebral Palsy with the Director of Communication for The Cerebral Palsy Alliance Foundation, Jocelyn Cohen who also has CP.
We discuss the different types and ways to categorize CP, different treatment options, what it was like growing up in the 80s and 90s with CP, how adults with CP navigate their world, the role of caregivers, different ways to connect with other CP patients and caregivers, what CPARF is currently researching, how to make an impact on CP research, the economic burden of having CP, and more.
Important Links
The Cerebral Palsy Alliance Research Foundation
Faces of CP
PTwithCP
CPSoccer
Texas Cerebral Palsy Connection
United Cerebral Palsy
American Academy of Cerebral Palsy and Developmental Medicine
Center for Disease Control
Headstrong Art
Hou To Guide on Instagram
Hou To Guide on Facebook
I've Got 99 problems, but Palsy is just one: Maysoon Zayid TED talk
Today is Declan's 1 year SDR anniversary. In honor of this day and the huge milestone it is, we will kick off our SDR series beginning by telling Declan's SDR story.
We go over what SDR (selective dorsal rhizotomy) is, the selection process for St. Louis Children's Hospital, our personal journey to making this decision, and the how the surgery went for Declan.
Important LinksWhat is SDR- St. Louis Children's Hospital
St. Louis Children's Hospital Center for Cerebral Palsy Spasticity
Texas Children's Hospital
Gillette Clinic Specialty Healthcare
Selective Dorsal Rhizotomy Facebook Group
Interview with Paige Flamm
Hou To Guide Instagram Account
TSA Cares Travel Assistance
In part three of our series on our recent vacation to Colorado, we cover the place that started it all: Great Sand Dunes National Park. We love this less-traversed park so much, we had to devote an entire episode to it.
We discuss our most current adventure there, as well as our "side trip" there last summer. It was there we first realized most places try really hard to be accommodating to mobility-challenged travelers and that made us realizing traveling and camping and hiking with our son who has CP was possible.
Our love affair with this often-overlooked park is detailed here.
Important LinksGreat Sand Dunes National Park
Zapata Falls Trail, AllTrails
Sangre De Cristo Mountain Range
San Isabel National Forest
Rio Grande National Forest
Recreation.gov
Sand Board Rentals
Medano Pass-the road connecting the North and South Entrance
Rocky Mountain National Park
National Park Information-TheHouToGuide.com
America The Beautiful Access Pass Information-TheHouToGuide.com
In part two of our 4-part series focusing on our recent trip to the CO Springs area, we review even more activities including zip lining at Seven Falls, hiking Rainbow Gulch in the Pike National Forest, horseback riding at Old Stage Riding Stables, and dining out in the time of COVID at Phantom Brewing Company.
We discuss the affordability of these activities as well as their accessibility in hopes of helping all families, but especially special needs families plan memorable trips to one of our favorite places.
Important Links
Zipline at The Seven Falls
Seven Falls
Horseback Riding at Old Stage Riding Stables
Rampart Reservoir via Rainbow Gulch, AllTrails
Pike National Forest
Woodland Park, CO
The Broadmoor
Visit Pikes Peak Pike
In the first episode of this four-part series, we get back to travel. We discuss the first few days of our recent trip to Colorado Springs that was shared with relatives from Missouri.
We go over the drive (which is our tip for this week: DRIVE AT NIGHT WHILE KIDS SLEEP), Pulpit Rock, Vindicator Valley Trail, Canon City, and The Royal Gorge Bridge Park. Not only do we give some overviews of these destinations, but also dive into the accessibility of each.
We also want feedback from our listeners: does this format work? What are some places we should check out in the Colorado Springs area? What are some areas or parks or destinations you want to learn more about?
Important LinksPulpit Rock Trail, AllTrailsGold Mine Trail: Vindicator Valley Trail Garden of The GodsRoyal Gorge BridgeThe Hou To Guide on AllTrailsHashtagColoradoLife: Cripple Creek episode
HashtagColoradoLife: Colorado Springs episode
This week, we interview Paige Flamm of Utah. Paige is the mother to 7 year old Kinsley and she talks with us about Kinsley's diagnosis of Holoprosencephaly (HPE) and the CP that is a result of that diagnosis.
She also walks us through her daily life as a special-needs parent and her journey to getting her daughter approved for selective dorsal rhizotomy( SDR).
Paige runs a successful home, life, and special-needs parenting blog and Instagram. You can read more of her work at thehappyflammily.com or follow her on Instagram @thehappyflammily.
Important LinksThe Hou To GuideThe Happy Flammily2019, Advocating Moms Conference, Salt Lake CityUtah Parent CenterNational Forests, by StateLegoland-California Resort, Disabled GuestsSeven Accessible Beaches in San DiegoEarly Intervention: "New Guidelines for Eariy Diagnosis of Cerebral Palsy" article from The Cleveland ClinicNational Organization of Rare Diseases information on HPEWillow's CP Journey SDR Information Families for Hope: Holoprosencephaly Support Group
This week, we dive into what cCMV is by speaking with Dr. Gail Demmler-Harrison of Texas Children's Hospital and Baylor University. We also touch on some of the biggest strides in cCMV research and review some prevention tips.
Dr. Demmler-Harrison is the foremost expert on cCMV and is a board certified Infectious Diseases Doctor.
She has been studying cCMV for the length of her medical career.
Important LinksTexas Children's Hospital
Baylor University College of Medicine
Dr. Demmler's TCH Profile
Dr. Demmler's Baylor College of Medicine Profile
Congenital CMV Disease Research, Clinic & Registry Facebook Page
CMV BCM Twitter Page
"Cytomegalovirus: The Virus All Pregnant Women Should Know About Now" by Dr. Gail Demmler
The National CMV Foundation
American College of Obstetrics and Gynecology
CDC
WHO
Maddie's Law article
Texas State Bill 791
In this weeks episode we speak with Mrs. Amy Wilson a Pre-K Special Education Teacher from our school district.
We discuss what went on behind the scenes during the school shutdown last year, what we can expect from virtual school this year, and how to ensure our Sped students are not left behind during this unusual time for COVID.
In this week's episode we speak with Joanna Kaul of Cole Health about ABA therapy, how the transition to teletherapy has been, and plans for the future of ABA.
We also discuss some tips and tricks for a successful session, discuss resources for families and the community, and talk about travel safety.
Important LinksCole Health
Texas Association for Behavior Analysis
Association for Behavior Analysis International
FEAT Houston
Autism Speaks
Hope for Three
OpthoPatch
This week, we dive into what speech therapy looks like in a teletherapy setting. We speak with Meg Baum, Regional Director of Cole Health in Texas and Jenny Villegas, SLP at Cole Health.
In addition to exploring what speech looks like in the age of COVID, we also hear about a private practice's transition to teletherapy and we go over some tips and tricks for a successful Speech Therapy setting, regardless of setting.
CorrectionIn episode one, I mentioned Meg Baum and Cole Health and said the charge would never be more than $50.00. That was inaccurate. The charge would never be more than $100.00 for self-pay.
LinksCole
American Speech Language and Hearing Association
Speech-Language Pathology and Audiology-US
Theraplatform
Game RecommendationsScrabble
Rummikub
Yahtzee
Skip Bo
Cariboo
This is part two of a multi-part series focused on the world of teletherapy we find ourselves in due to the COVID crisis.
Last week, we spoke with PT Joanna Roybal and OT Caroline Duong about the transition to teletherapy. This week we continue that conversation by exploring the unexpected benefits of teletherpay, its role in the future, and some tips and tricks to have a successful PT and OT teletherapy session.
Important LinksAPTA.orgAOTO.orgTexas Children's HospitalMotor LinksTools to GrowLearning ExpressFitness Blender
When COVID hit, many special needs families felt the repercussions on mass shutdowns and quarantines hard. Not only did we worry for our children's health, but the services they received in school settings and elsewhere seized and the new normal soon became telemedicine or teletherapy. In this week's episode we discuss the transition to telemedicine with two of Declan's therapists: Joanna Roybal (PT) and Caroline Duong (OT). This is part one of a two part series.
We also reflect on the podcast so far and announce a few changes.
Important LinksWHO
CDC
Texas Children's Hospital
National CMV Foundation
SDR (at St. Louis Children's Hospital)
The Cerebral Palsy Foundation
AAP (American Association of Pediatrics)
APTA (American Physical Therapists Association)
AOTA (America Occupational Therapists Association)
Fitness Blender
Recently, our 13 year old son had the chance to go to CO Springs with James and spend 14 days there. During those 14 days, the two of them embarked on a road trip to explore Grand Teton, Yellowstone, Craters of the Moon, and Dinosaur Monument. They camped their way from park to park and spent some quality one on one time together for the first time in a long time.
We interview Connaghan as he and James discuss the planning of the trip and how it went, the importance of one on one time for children, and where they want their next adventure to be.
James also touches on the accessibility of the parks and lays out our plans of reviewing trails with accessibility in mind on our profile on alltrails.com and on the HouToGuide.com blog.
In this weeks's episode, as we close out the moth of June and CMV awareness month, we wanted to share our own story with cCMV.
After a fairly normal and uneventful pregnancy, Declan started showing signs at 34 weeks that something was not right.
Luckily, we only had about three weeks to worry before he came rushing into this world and our lives have never been the same.
Listen to find out about our journey and hear Declan's story with cCMV.
Important LinksThe National CMV Foundation
Ocshner Health System
New Orleans Children's Hospital
Crane Physical Therapy
Texas Children's Hospital
"Cytomegalovirus: The Virus all pregnant women should know about now" by Dr. Gail Demmler
This week we had the opportunity to interview Erin Swetnam about her and her son's journey with cCMV.
Mrs. Swetnam has been instrumental in getting legislation passed in Colorado to educate pregnant women about the risks of cCMV.
A video of her son hearing for the first time due to hearing aids went viral in 2017 and that was an opportunity to educate the wider public about the risks of cCMV as well as how to prevent acquiring it while pregnant.
Listen to hear more about her journey and to find out about how Matthew is doing now.
Important Links
Matthew hears for the first time
Colorado Department of Health
National CMV Foundation
Rocky Mountain Hospital for Children
An introductory episode to The Hou To Guide. Meet the hosts and creators, James and Katie Hou. Hear about who they are and why they have chosen to start both this podcast and their Blog TheHouToGuide.com. James and Katie discuss their journey leading up to their Blog and Podcast creation which includes creating an interracial family of 6. The birth of their youngest son and his subsequent diagnosis of cCMV and CP has led the family on a whirlwind journey of becoming a "special needs" family.
The Hous seek not only to share the resources they have found along the way, but also hope to share the beauty in their everyday lives, their love of travel (mostly to National Parks within the US) and how all three aspects of their life (everyday life, travel and accessibility) intersect.
Links
The Hou To Guide Website/Blog
Transcend Orthotics
Sure Step
The National CMV Foundation