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Advocate Like a Mother Podcast - S01 Episode 5 - Diagnosis with Jen Jacob of DSDN

S01 Episode 5 - Diagnosis with Jen Jacob of DSDN

01/21/19 • 69 min

Advocate Like a Mother Podcast
Welcome friends, On today’s episode of Advocate like a Mother PodcastTM we talk all about diagnosis. Michelle and I got together to chat with Jen Jacob, author, co-founder, and executive director of Down syndrome diagnosis network the DSDN. Jen graciously shared her diagnosis story with us today. You know when the doctor looks at your different? Or when they say the words “these are difficult ultrasounds to go over.”? You immediately go into that outer-body experience. When your child gets a diagnosis it totally changes your life, as Jen told us. Jen’s nonprofit, Down Syndrome Diagnosis Network, launched in 2014. Their biggest effort is to inform, connect, and support new families. Pregnancy - 3 years or age are their main focus right now. They also have small private birth club groups where you can connect and find others. “They also provide resources for doctors. Local organizations and medical professionals have so much power so when we all work together, magic happens.” Here are some quotes from parents the DSDN website: “A doctor had said Your son has a long life to look forward to. The only limitations they will have are the ones you set for him so make sure not to set any.” “It’s your job to love her and enjoy the ride.” “They only thing they won’t be able to do is scuba dive.” (from a Cardiologist.) And the best one, “I can’t tell you what they won’t be able to do I can’t do that with any baby.” That is a quote from a doctor with the right mindset for parents making a huge difference. When you get that diagnosis and your in a daze or feeling hopeless. This episode is all for you. To any parent struggling with a child that has any diagnosis, you are not alone. We are here to help encourage you, and to help find your community. Michelle & Ashley CONNECT WITH OUR SHOW INSTAGRAM | www.instagram.com/advocatelikeamother TWITTER | www.twitter.com/advocatelikeamom EMAIL | [email protected] PATREON | www.patreon.com/advocatelikeamother
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Welcome friends, On today’s episode of Advocate like a Mother PodcastTM we talk all about diagnosis. Michelle and I got together to chat with Jen Jacob, author, co-founder, and executive director of Down syndrome diagnosis network the DSDN. Jen graciously shared her diagnosis story with us today. You know when the doctor looks at your different? Or when they say the words “these are difficult ultrasounds to go over.”? You immediately go into that outer-body experience. When your child gets a diagnosis it totally changes your life, as Jen told us. Jen’s nonprofit, Down Syndrome Diagnosis Network, launched in 2014. Their biggest effort is to inform, connect, and support new families. Pregnancy - 3 years or age are their main focus right now. They also have small private birth club groups where you can connect and find others. “They also provide resources for doctors. Local organizations and medical professionals have so much power so when we all work together, magic happens.” Here are some quotes from parents the DSDN website: “A doctor had said Your son has a long life to look forward to. The only limitations they will have are the ones you set for him so make sure not to set any.” “It’s your job to love her and enjoy the ride.” “They only thing they won’t be able to do is scuba dive.” (from a Cardiologist.) And the best one, “I can’t tell you what they won’t be able to do I can’t do that with any baby.” That is a quote from a doctor with the right mindset for parents making a huge difference. When you get that diagnosis and your in a daze or feeling hopeless. This episode is all for you. To any parent struggling with a child that has any diagnosis, you are not alone. We are here to help encourage you, and to help find your community. Michelle & Ashley CONNECT WITH OUR SHOW INSTAGRAM | www.instagram.com/advocatelikeamother TWITTER | www.twitter.com/advocatelikeamom EMAIL | [email protected] PATREON | www.patreon.com/advocatelikeamother

Previous Episode

undefined - S01 Episode 4 - Inclusive Playgrounds with Rebecca Kuntz

S01 Episode 4 - Inclusive Playgrounds with Rebecca Kuntz

Welcome friends. On today’s episode of Advocate like a Mother Podcast, Michelle and I get together to chat with Rebecca Kuntz. Rebecca has a daughter named Ellie who has cerebral palsy, epilepsy, and microcephaly. We talked all about inclusive playgrounds. An inclusive playground is a playground accessible to wheel chairs, canes, walkers, sensory challenges, deafness and blindness. Parks in the U.S. are typically non-inclusive, meaning children with disabilities don’t have all of the special accommodations needed in order to be as safe as possible. When creating play environments that allow all children and their families to play, in addition to ensuring access, we must ensure inclusion. Kids need to play together, regardless of their abilities. Accessibility is not enough. Simply getting a child with limited mobility onto the playground doesn’t necessarily enhance their play experience. Nor does it take into consideration children with sensory deficits and other developmental issues.The Americans with Disabilities Act (ADA) made play areas and parks accessible to all children, but this doesn’t necessarily mean they’re built so that kids with different types of disabilities can play equally. New federal requirements under the Americans with Disabilities Act are changing the landscape for public playgrounds, requiring them to include equipment, materials, and designs that provide children with disabilities the same play opportunities as typical children. Parents and advocates are making the real difference — not the federal government. To have statistics you need researchers to be viewing the information, but there’s no funding for them. That and nobody is researching it so we have no statistics - This is a HUGE issue right here. If you don’t have a universally-designed playground in your community, there are a number of steps you can take to get the plan in action: Speak with local chapters of disability organizations about sponsorship and funding, such as the United Cerebral Palsy (UCP), Easter Seals, and United Way. Reach out to the parks and recreation department in your area and inquire if there’s a way for citizens to help raise funds for an inclusive playground. Get the local media interested, which can help spread awareness Talk to officials at your city’s town hall (be sure to be prepared to educate them as much as possible about the benefits of an inclusive playground). Speak with school officials, particularly if there are large numbers of children with special needs. Start a fundraiser (Note: Having funds will help you in your missions, but it often takes a lot of time and can be taxing. Getting non-profit support will make things a bit easier). To any parent struggling with inclusion , you are not alone. We are here to help encourage you, and to help find your community. Michelle & Ashley CONNECT WITH OUR SHOW INSTAGRAM | www.instagram.com/advocatelikeamother TWITTER | www.twitter.com/advocatelikeamom EMAIL | [email protected]

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undefined - S01 Episode 6 - Feeding Therapy with Singer Songwriter Kendall Renee

S01 Episode 6 - Feeding Therapy with Singer Songwriter Kendall Renee

Hey Friends! Today’s episode is part one of a two part series all about feeding. On this episode I sat down with recording artist Kendall Renee and her mom Kim Hollinger. Kendall has had a feeding tube since the age of four. We got Kim’s perspective as her mom and we got Kendall’s perspective on growing up with a feeding tube and feeling different. Kendall explains how her feeding tube became a source of strength for her and how it inspired her song “Original” which she performs for us. To any parent struggling with any diagnosis, you are not alone. We are here to help encourage you, and to help find your community. Watch her performance of "Original" on the podcast here: https://youtu.be/ScpdSi0eG6Y Michelle CONNECT WITH OUR SHOW INSTAGRAM | www.instagram.com/advocatelikeamother TWITTER | www.twitter.com/advocatelikeamom EMAIL | [email protected] PATREON | www.patreon.com/advocatelikeamother

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