Inspiring life despite a diagnosis
Podcast by Orange Socks
Apr 4 2022
Kristy and Andrew: Pfeiffer Syndrome
utero something was wrong and were candid about their worries and stress. When Hadley was born all of that changed.
Apr 4 2022
Kristy and Andrew: Pfeiffer Syndrome
utero something was wrong and were candid about their worries and stress. When Hadley was born all of that changed.
Dec 20 2021
Mariah: THAP12 Mutation
for good. She is a fierce advocate by paving the way for future research to help others who may receive the same diagnosis.
Sep 9 2021
Regan: Goldenhar Syndrome
Matthew has three very rare abnormalities. He has been diagnosed with Goldenhar syndrome, agenesis of the corpus callosum, and an extra copy of his 78N22 chromosome. Now at 12 years old, Regan, Matthew's mom, shares her experience with Matthew so far.
Aug 23 2021
Danielle: DDX3X syndrome
Dani and her family fought hard to receive an official diagnosis for her daughter Hayden. After many specialists they finally received a diagnosis of DDX3X. So rare that there that at that time there were less than 500 people that have ever been diagnosed with this genetic deletion.
Jun 30 2021
Carrie: Gervais syndrome, Cerebral Palsy, Autism, and SCN1A Gene Mutation
Carrie was only 22 years old when she received the unexpected news that her son, Luke, was born with several disabilities. She lived far away from family, and single was single.
Jun 7 2021
Wrayanne: Lennox-Gastaut syndrome
Wrayanne was a first time mom when she learned her daughter, Morgan, was born with a rare severe epileptic seizure disorder. Wrayanne was candid about her struggles and her hopes for Morgan’s future.
Apr 22 2021
Jess: Bronchopulmonary Dysplasia
Lily was born at 24 weeks gestation weighing only one pound. Lily is a twin and unfortunately, her sister was stillborn. Lily has Bronchopulmonary Dysplasia. Her mom, Jess talks about the grief of losing a child while dealing with the news her daughter had a disability.
Oct 8 2020
Sock Talk: All About The Special Olympics
In this episode, we dive into the history surrounding the formation of the Special Olympics. We interview Rebecca Ralston, who is the director of the Young Athletes Program of The International Special Olympics.
Sep 16 2020
Sock Talk: A Doll Like Me with Amy Jandrisevits
Amy Jandrisevits created A Doll Like Me, so kids with physical differences could love and cherish their very own doll that looked exactly like them. She personally makes each doll by hand, and to date she has raised more than $225,000 to help off set the financial burden for those who could not otherwise afford a doll.
Sep 1 2020
Candace: Down Syndrome
Candace comes from a big family; 11 children to be exact. The youngest child was born with Down syndrome. Candace shares her special relationship with Angelita and how she has impacted her family and life for good.
Jul 10 2020
Sock Talk: Go Shout Love
In this episode, Gerald talks with Josh Veach, the co-director for Go Shout Love. A cause-driven for-profit business that raises funds and awareness for families on unique medical journeys. Go Shout Love The Formation of Go Shout Love Go Should Love was first created by Kristen Estock in 2014. She used her blog as a platform to tell a family’s story about their child who had spinal muscular atrophy or SMA. Now Go Shout Love is a cause-driven for-profit business that raises awareness and funds for families with rare medical needs. As a for-profit company, Go Shout Love has an online store that shares 50% of the proceeds to directly help families. Josh Veach, the co-director of Go Shout Love shared a few examples of the type of care Go Shout Love provides. He said, “For some families that might look like helping contribute to the cost of repairing or getting a new handicapped accessible van or making their home more handicapped accessible.” Josh also explained how each month, Go Shout Love has new t-shirts in their online store that are inspired by the child they are featuring for the month. Go Shout Love’s Mission Later Josh shared what his team of seven dedicated members hope to accomplish with Go Shout Love. He said there are two main things they are trying to achieve through their platform of Go Shout Love. The first is the tangible gift of money, the second is the connection of story and love with others. Josh described the second goal of Goal Shout Love as the real sense of accomplishment his team and he feels. “We want these families to have a place where they’re heard and loved and supported.” The Process of Being Sponsored on Go Shout Love There are two main ways that someone can be sponsored through Go Shout Love. Josh described the process as, “Kind of how the process works is they get nominated through our website. Families nominate themselves or maybe a friend or family member nominates them.” After they receive a nomination they look to see if the family would be a good fit based on certain criteria. The families are then able to share their story through video. For one month the family is featured on their website and their story is shared. Throughout the month, all of the items on their website sold, 50% of the proceeds will go directly to the family. Challenges and Joys Working for Go Shout Love “The joys are getting to meet the families and the kids..to know that, that check we are getting ready to send is going to tangibly make a difference in their everyday life is incredibly rewarding for me.” Josh said. Being a business is what Josh described as being challenging. He shared, “We have to navigate tough times or low months or even in the midst of this season where the economy is in a really difficult position. Our ability to provide not only for our families but also continue to pay our team members in a fair wage..I think the biggest challenge in the big picture is that we are limited in how many families we can help.” The Impact this Line of Work Has on Someone Josh shared how this journey has impacted his life. He said, “When you meet people who have navigated and are navigating extremely difficult situations with grace, with strength, with courage, it is impossible to not be impacted by their stories.” He continued by saying, “It has given me an overwhelming realignment in my perspective in my lens in how I view the world, how I view other people. Especially people that look and act in every way possible different than me.” How to Get Involved Go Shout Love has several different avenues that people can get involved in. They are on Instagram, Facebook, and Twitter. You can find their website at There you can find additional ways to get involved and find their store, podcasts, and their family stories. “Look for the opportunity to be the good.” These were Josh’s last words.
Jul 1 2020
Denise: Autism and Epilepsy
Denise shares how her son, Matt, who is on the autism spectrum inspired her to create two amazing companies that strive to better the lives of people with disabilities.
Jun 3 2020
Katherine: A Guardian For Her Sister With Profound Disabilities
Katherine has a sister she never knew existed until she was 12 years old. A sister, who is profoundly disabled was placed in an institution as a young child. Katherine reconnected with her and has become her guardian.
May 20 2020
Sock Talk: International Adoption for Children with Disabilities
Dr. Gerald Nebeker talks about a few adoption agencies that help facilitate international adoptions for children with disabilities. In this podcast you will also hear from Michelle, the CEO of Reece’s Rainbow as well as Kecia and Chris who have adopted two children with Down syndrome from the Ukraine.
Apr 23 2020
Sock Talk- Early Intervention with Kristin Mancuso, PT, DPT
Dr. Gerald Nebeker talks about early intervention services that are available to children with developmental delays and disabilities. Gerald speaks with Kristin who is the director of the Early Intervention program at RISE. She explains who is eligible and the purpose behind early intervention. Early Intervention According to the CDC, early intervention is a term used to describe services offered to children ages birth to three with developmental disabilities and or developmental delays and their families. There are several different types of services offered through early intervention. Depending on what the child needs, they can receive the following services: speech therapy, physical therapy, or occupational therapy. Each state has their own early intervention program. These programs are publicly funded and provide services at a reduced cost or for free for any child who is eligible. Early intervention is focused on ages birth to three. This is a critical learning point in a child’s life. The main goal of early intervention is to help with delays as soon as they become an issue; rather than waiting until later. Is My Child Eligible for Early Intervention? Kristin, who is the director of the Early Intervention program at RISE, helped explain who qualifies for services. She said, “..we’re looking at children that are birth to three that are demonstrating a developmental delay, whether it’s a mild to a significant developmental delay those are the children that would be eligible for the program.” Kristin then gave a great example of a developmental delay. She said, “..for example when a child is walking. We would expect a child to be walking between the ages of 12-15 months, and so if you have an 18-month-old child that hasn’t started walking yet, we would consider that a developmental delay.” Determining if a Child is Eligible for Services At the pediatrician, parents or caregivers are asked developmental questions about their child. Pediatricians use these to help find children who may need additional support. The pediatrician will refer that child for services. Depending on where you live, the eligibility criteria process and criteria can vary. Kristin is in the state of Arizona. After they receive a referral for services, a member of their team will assess the child in five different categories to determine if they qualify for services. Those categories are: cognition, language, motor skills, social emotional skills, and their adaptive or self-help skills. Members of the early intervention team use a standardized assessment to assess where the child is at for each of the five areas. Who Pays for Early Intervention? Depending on which state you live in, depends on which department is paying for the early intervention services. Kristin said, “The services are provided by contractors within the state. Every state is different, some are through the Department of Education, some of it’s through the Department of Health and there is federal funding that supports early intervention as well, and that's the IDEA Part-C.” What Happens After Age Three? Early intervention is only ages birth to three, what about the children who require additional supports after they turn three? Kristin explained that part of the early intervention is helping with the transition to other services. Some children go to a special education preschool, some children can qualify for a Medicaid program through their state, and others, if they choose, can use their private insurance to pay for additional services the child might need. Family is Critical for Success in Early Intervention Part of early intervention is helping support the parents in their home with their child. Kristin said, “Practice makes perfect.”. In the case of early intervention nothing could be more true. Our brains require repetition to learn something new.
Apr 4 2020
Christie and Eric: Epilepsy, Autism, Mood Disorder, Developmental Disability.
As soon as the neurologist saw Elie, he knew she had a serious condition and soon after diagnosed Elie with infantile spasms, which is considered a medically catastrophic seizure disorder. "It was heartbreaking," Eric said. "I remember thinking that I didn't know what to think. I didn't know what to expect. It was a whole road that we couldn't see in front of us."
Mar 23 2020
Sock Talk- Employment and People With Disabilities
Even though the country has a record low employment rate of 2-3 percent, people with disabilities have an unemployment rate of 65 percent. Why is this? In this Podcast Gerald talks about with proper training, coaching, and job matching, people with disabilities are able to become dedicated employees. Employment Opportunities for People with Disabilities Unemployment Rates There are 48.9 million people in the US with at least one form of a disability. 65 percent of those are unemployed. With the national unemployment average at 2-3 percent, it’s shocking that people with disabilities have an unemployment rate so high. There are several reasons someone with a disability could be unemployed. Some perhaps don’t want to work, for some it’s an accessibility issue, and for others it could be an issue of training. Why Not Hire Someone with a Disability? There are several jobs out there that someone with a disability could do if given the proper training. For instance, sorting hangers at a clothing store, janitorial work, cleaners, or stock clerks. None of these jobs are made up, they require somebody to do them. Given the right training and matching of skills, somebody with a disability could fill those needs. Using Their Strengths to Help People with Disabilities Find Employment Gerald shared a wonderful example of employing someone with a disability. Bob is on the autism spectrum and loves to sort things. Bob rarely speaks and has episodes of self-injurious behaviors or aggressive behaviors towards others. At first you might think Bob is unemployable. However, with some creativity and using what skills Bob has, he found the perfect job. Bob sorts maps for the Forest Service. He is great at it, it doesn’t require communication with others while sorting, and his aggressive behaviors are non-existent while he is sorting. How do People with Disabilities Find Employment? There are organizations like RISE, Orange Socks’ parent company, that have contracted with the state to supply supported employment. RISE has staff who contact businesses and explore their needs and how someone with a disability could fulfill those needs. When the person is placed in the job, they get a job coach who shadows the client making sure they perform the required task. At first that shadowing could be full-time, but then it’s gradually faded to a point where they no longer need a job coach.
Mar 3 2020
Jessica and Jonathan: Growth Hormone Deficiency
Jessica and Johnathan were shocked and relieved to receive a diagnosis for their son Trenton. Jessica struggled for years to find a doctor who would help her. Her journey in advocacy led her to start a nonprofit organization called Collaborative Corner for Exceptional Children. A company dedicated to helping parents find resources and become advocates for their children with disabilities.
Feb 26 2020
Maria Update: From a Fatal Diagnosis to Thriving
All Maria wanted was to be able to get the chance to tell Serenity how much she was loved. She said, “I just prayed and I asked God if he could just give me fifteen minutes to love her. To tell her how much I loved her.
Feb 20 2020
Sock Talk- NIPT
In this episode Dr. Gerald Nebeker talks about NIPT prenatal testing and how the results are often misinterpreted. NIPT Testing What is NIPT? NIPT stands for noninvasive prenatal testing. Doctors often use NIPT to screen for genetic abnormalities. It is considered non-invasive because the test requires blood from the mother. They are then able to differentiate between the fetus’ DNA and the mother’s. While this test is considered to be very accurate, Gerald points out some cautions. “It’s important to know that it's a screening test only. A positive result doesn’t necessarily mean the baby has a condition. The test results show that the baby has an increased risk but it cannot diagnose a disorder” Beware of How Statistics are Represented The NIPT test boasts a 99% accuracy or 99% sensitivity. However, if you receive a positive result, this does not mean that your child has a 99% chance of having that condition. When quoting Bloom Life Gerald stated, “NIPT can detect over 99% of fetuses with Down syndrome but a positive result on a NIPT does not mean that you have a 99% chance of having a baby with Down syndrome.” Chance Result Sometimes NIPT gives a chance result when the baby does not actually have the condition. For instance if you are given a high chance result for Down syndrome there is 20% chance the baby does not have Down syndrome, for Patil syndrome there is a 50 chance the test is wrong and for Edwards syndrome there is a 60% chance the test is wrong. You will still need to get further testing such as an amniocentesis to confirm a diagnosis. Why Get NIPT? Even though NIPT there can result in a false positive or negative result, when used as a screening tool, it can be effective in helping to determine if further testing is required. Some women have mentioned that because nothing is guaranteed they wouldn't want to have a NIPT done. Others have stated that they want to be prepared for the possibility of having a child with a condition the test screens for. Gerald said, “I’ve done a number of Orange Socks interviews where a screening test indicated something wrong with the baby and the parents were strongly encouraged to terminate the pregnancy. Only to find when the baby was born that he or she didn't have that condition.” Tamara and Matthew's Experience with NIPT While Tamara was pregnant with their son Grayson, they had a NIPT done to determine the gender of their baby. They received the unexpected news that their child was at high risk for Down syndrome. During their follow up interview, after Grayson was born, Tamara and Matthew shared their experience. Even knowing their screening results, they grieved the fact that Grayson did in fact have Down syndrome. However, they have come to realize they had nothing really to worry about. >>See Tamara and Matthew's interview here