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 | Hello@advocatelikeamother.org PATREON | www.patreon.com/advocatelikeamother --- Send in a voice message: https://podcasters.spotify.com/pod/show/advocatelikeamother/message

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 | Hello@advocatelikeamother.org --- Send in a voice message: https://podcasters.spotify.com/pod/show/advocatelikeamother/message

Welcome friends, On today’s episode of ”Advocate like a MotherTM Podcast,” Michelle and Ashley chat with the Sandi Ames. Sandi is the director of Parents CAN which stands for Collaborate, Advocate, Navigate. Parents CAN is a non profit that provides education and support to individuals with disabilities, their families, and those that serve them. She is an incredible child advocate and parent mentor. We sat around Michelle’s kitchen table with Sandi to discuss IEP’s (individual educational plan). We discuss goals and the actual assessment in our first part of this two part series. Sandi is a powerhouse advocate when it comes to IEPs and the school, she’s been in the field since the mid 80s! On this second part of this episode we discussed the actual meeting itself. Sandi is working hard on giving the educators the resources that they need. Going into the IEP meeting make sure you know this is not a us vs. them, We need to all work together. You should review the assessment, and the proposed goals, make sure you have a vision for your child. Come prepared with your talking points. Keep in mind we want to build a strong relationship and help build this foundation for our kids. Be proactive not reactive. Don’t feel overwhelmed when you feel emotionally charged during the meeting, take a break, take a deep breathe, and come back. There’s so many approaches. You can always bring someone with you to take some notes. You have a voice in this, you can ask for them to explain their abbreviations and district terms. It’s your meeting, we are equal members of the team. To make it a little less stressful we have included a checklist you can bring in alongside your brag sheet! To any parent struggling with a child that has an IEP, you are not alone. We are here to help encourage you, and to help find your community. Michelle & Ashley Check out the IEP checklist here: https://www.advocatelikeamother.org/podcast/s01ep3-iep-sandiames-pt2 CONNECT WITH OUR SHOW INSTAGRAM | http://www.instagram.com/advocatelikeamother TWITTER | http://www.twitter.com/advocatelikeamom EMAIL | Hello@advocatelikeamother.org --- Send in a voice message: https://podcasters.spotify.com/pod/show/advocatelikeamother/message

Welcome friends, On today’s episode of Advocate like a Mother PodcastTM, Michelle and I got to chat with the Sandi Ames. Sandi is the director of CAN which stands for Collaborate, Advocate, Navigate. CAN is a non-profit that provides education and support to individuals with disabilities, their families and those that serve them. She is an incredible child advocate and parent mentor. We sat around Michelle’s kitchen table with Sandi and talked all about IEP’s -if you don’t know what an IEP it stands for “individual educational program”. We discuss goals and the actual assessment in our first part of this two part series. Sandi is a powerhouse advocate when it comes to IEPs and the school. She has been working in the field since the mid 80s! Having a child in “special education” means you need a lot of prayer and prep. She has a “house” metaphor that explains a great program for a student with a disability. In the “house” metaphor, first you need a foundation, or an assessment where everyone is in agreement. Second, you have your walls, which are the goals. The areas where your focus to help improve the child. Then you have the roof, which is the services. The amount of time each service gets. Then you have the neighborhood where they would be best placed. To any parent struggling with a child that has an IEP, you are not alone. We are here to help encourage you, and to help find your community. SHOW LINKS > Michelle mentioned that she wrote a blog post all about Eli's first IEP and a guide for other parents on how to be prepared for their child's first IEP. Read her article here >> https://www.littlestwarrior.com/blogs/news/a-guide-to-your-childs-first-iep > And our friend Tiffany Stafford (if you want to link to her, here is her FB link: https://www.facebook.com/tiffany.n.stafford ) made a great template for brag sheets or as she calls them, vision statements. You can find the template on her blog here >> https://our3lilbirds.blogspot.com/2017/05/how-to-make-one-page-profile-ellie-style.html?m=1&fbclid=IwAR02VrGa0ZyYW-Tls2PSEm6aKgbxjvoNKfFRrFf-bcxXYUaxiFW5R8P-Qy4 > 18 TOOLS FOR INCLUSIVE UNDERSTANDING AND SUPPORT WORKSHEET > https://advocatelikeamother.squarespace.com/s/18-Tools-for-Inclusive-Understanding-and-Support.pdf Email Sandi Ames: parentscanoc@yahoo.com Michelle & Ashley CONNECT WITH OUR SHOW INSTAGRAM | www.instagram.com/advocatelikeamother TWITTER | www.twitter.com/advocatelikeamom EMAIL | Hello@advocatelikeamother.org --- Send in a voice message: https://podcasters.spotify.com/pod/show/advocatelikeamother/message

Hey everyone! Thank you for joining us for our Season Finale LIVE Show with Ileana Sosa and Kendall Renee. We had such an amazing time together at Bella Blooms, sharing our journeys together and meeting many of you face to face. This has been such an incredible first season, and as I mentioned early on in this journey I really never imagined doing a podcast, but felt so deeply called to share my story and journey with you all. It has been so encouraging to see you support the show and own your advocacy. Sign up for the email list on the website for news on season 2 and other updates from us along the way. Again, thank you to so many of you that made this show happen. This season's co-host Ashley and entire The Montano family, my husband Eric and my kids for being so supportive, all of our sponsors; The Glory Days, Speech Blubs, Delivering Fancy, and Functional Formulas. And of course, our producer, editor and engineer, Andy Lara with http://www.andylikeswords.com for making all of the technical things happen. See you all next time! - Michelle Sullivan http://www.advocatelikeamother.org - This week's Sponsor is brought to you by Speech Blubs! SPEECH BLUBS WEBSITE : https://speechblubs.com Download the App Here: https://itunes.apple.com/us/app/speech-blubs-language-therapy/id1239522573?mt=8 --- Send in a voice message: https://podcasters.spotify.com/pod/show/advocatelikeamother/message