Episoder
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After Lucas missed milestones around nine months old, they sought help. They were told to see a geneticist who thought because of Lucas’ unique hair texture that he had a copper related disorder.
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Brittney and Derik share what SHINE syndrome is and how it has made an impact in their life. Their daughter has been a joy in their life despite some of the difficulties that come when having a child with SHINE syndrome.
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Manglende episoder?
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When Matt was only 3 hours old, Wendy was told he had Down syndrome. When we asked her how she felt receiving that news she told us, "I think I every emotion known, I was going through. I experienced shock, fear, trauma, devastation, anger. I thought, what did I do? Why me? I was afraid that my life had just been ruined'
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During a routine ultrasound, Madison and Ty found there was something was wrong with their baby boy. When they went to the specialist, they were told their baby’s bladder was large, and his kidneys were covered in cysts and had little to no function- a condition that is incompatible with life.
Devastated, Madison thought about the possibility of carrying their son as long as she could, so they could donate his organs. They learned to qualify for organ donation, he had to be carried to 36 weeks’ gestation, and weigh at least 6 pounds- this became their goal.
After delivery, their son, who they named Cameron, was placed on Madison's chest and she said it was “the most magical, best feeling in the whole world.” Doctors confirmed there was nothing they could do to intervene. Madison and Ty said they were confident Cameron didn’t feel any pain, and it was the best decision for them.
Ty said that when he got to hold Cameron that “it was perfect, the world was perfect, everything was right.” Cameron lived for two hours and 43 minutes and Ty says, “for two hours and 43 minutes the world was perfect.”
When asked how that experience changed their lives, Madison said “it puts everything into perspective, our lives are so short. I want to be so positive; I want everybody that knows me to feel my love for my son.” Ty said that it had helped him to appreciate time and people more. He said, “I felt a new kind of love that I didn’t know existed, and that was special, it was so special.” Ty said advice he would give is that “your wife probably knows best. She has the closest connection, and she knows things that you don’t know or can’t experience, and you should trust her. I chose that whatever my wife would like to do, is what we are doing do. And that was the greatest decision that I’ve ever made. He said you get to experience good things out of it. Do your research, listen to your doctors they have a valued opinion, they are looking out for you as their patient, but this is your life.” Madison says the best advice she can give is to just acknowledge that it’s the worst thing in the world. For somebody in that situation, I would say I’m always here. I know it’s terrible but I’m always here.
Ty and Madison love to talk about Cameron. They want to take every opportunity to talk about him. Ty says "everyone apologizes and says, “oh I’m so sorry I didn’t know you lost your son.” Which he replies “don’t apologize, let me tell you about him.” -
First signs something was wrong
Erika and Steve first noticed something was different with their son Blaise when he was 18 months old. Erika recalled, “He went to daycare and we would go in and notice that all the kids are playing in one area and he's over to an area by himself. He always did individual play.”
That wasn't the only thing she noticed. She shared that one of the most telling signs that something was wrong was when she dropped Blaise off at daycare. The other children would cry for their moms with intention and Blaise would just cry. “He wouldn't cry for me, he wouldn't cry Mama Mama.” Erika recalled.
Steve noticed Blaise was delayed in speech and was missing developmental milestones. He noticed a few more things which he shared saying, “Some of the behaviors, he would get fixated on say ipad or you know one particular thing and then he would stay on it. He also made these peculiar noises like all day long.”
After searching on google, Steven thought that Blaise had some of the same signs and symptoms of someone who has Autism.
Getting an ASD diagnosis
Most doctors will not give an autism diagnosis at 18 months. Erika and Steven were able to get connected with a company that helped Blaise get early intervention services as well as getting into a developmental preschool.
After Blaise attended the preschool for a little bit, Erika and Steven worked with another company to get a formal diagnosis when Blaise was 2.5 years old.
Being labeled as ASD was the fear
Erika shared an interesting perspective about receiving her son's diagnosis. By the time he was formally diagnosed she shared that her and Steven had already accepted the fact Blaise was different and had autism. Erika was afraid of what a formal diagnosis would mean for the care Blaise would receive.
She shared, “My biggest fear, I didn't want to get a diagnosis, even though we believed he had autism because in my mind I didn't want them to stick him in a box.”
She continued, “Once he was labeled then that's all the care he's going to get. He was only going to get autism care and an autism teacher…and it's a bigger world than that and I wanted him to have all the exposure that he could have.”
To help ensure Blaise wasn’t put in a box, Erika started working at the school Blaise was enrolled in. She gave a great example of how she has helped keep Blaise progressing. She shared, “Because he has autism and because he has sensory issues..they put headphones on him, because that's what he needs. When we have assemblies, I go in the assemblies and I take the headphones off…let's see if he can push through it. Don’t just give it to him because he has autism.”
Steve shared that he feels like when some parents have a diagnosis, they automatically put up a glass ceiling of what their child is capable of. Not even trying things because of the child’s label. “We wanted to treat him as regular as possible, give him the same experiences as regular children.”
Loving your child for who they are
Regardless of his disability, Steve said that he and Erika have loved, supported, and accepted Blaise for who he is. He said, “Don't give up, once you get that diagnosis, it's not a death sentence. Just focus on the early intervention, focus on the things that you can control and then eventually things turn out ok.”
Erika and Steve both shared their joys of having Blaise as a son, Erika shared, “Just when he meets those little milestones…he had to work four times harder to do something that comes naturally to someone else.”
Steve shared his joy saying, “I remember the first time he walked up to me with no prompts or anything and said, “Daddy I love you.” He looked me dead in the eye, and I was like “wow”.” Being able to see Blaise work towards a goal and accomplish it has been very rewarding for both Erika and Steve. -
utero something was wrong and were candid about their worries and stress. When Hadley was born all of that changed.
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for good. She is a fierce advocate by paving the way for future research to help others who may receive the same diagnosis.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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 https://goshout.love/. 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. -
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.
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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.
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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. - Vis mere
