Podcasts about sibshops

Oklahoma Family Network is thankful to have you join us today for the final release in this series and conversation with Charles, to help us celebrate what makes Charles III unique as we celebrate Rare Day today!!!   You will hear Charles brag on his daughter Zion and speak to the sibling relationship that Zion has with her little brother, Charles III. He also discussed tips he has for those in the community on engaging him and Charles III in conversation when you see them out and about.  And last, but certainly not least, we wrap up our great conversation with Charles putting the disability label away and tells us about his incredible son and his big personality!   Charles has big goals and dreams; and wants others to know about SibShops through SoonerSuccess.   Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions.   With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities.   Rare disease statistics to share with others: While each disease may be rare, collectively, they impact a large number of people. 300 million people worldwide live with a rare disease. There are over 6000 different rare diseases. 72% of rare diseases are genetic. 70% of these rare genetic diseases begin in childhood.   #CdLS #ShareYourColors #Rare #LittleLighthouse #SoonerSuccess #SibShops      

This month we talk about Sibshops; what they are and why you should be involved.  Our guests today are past Sibshop participant and leader of the SLN Tennessee chapter, TABS, Emma Shouse, Emily Holl of the Sibling Support Project, past participant Rachel Patterson and past Sibshop facilitator, Tina Prochaska.Access the transcript of this episode here.Acceda a la transcripción en español"Sibshops really take a wellness based approach and a strength based approach and building on those strengths and celebrating the resilience, grit, resourcefulness and creativity of siblings." -Emily HollResources in this episode:SibshopsSibling Support ProjectContact Emily at Sibling Support ProjectTennessee Adult Brothers and Sisters (TABS)Emma's Story in the newsNPR Story: Siblings of people with disabilities find connections through SibshopsList of Disability Councils, State-by-state below the podcast description on the SLN blogLikert ScaleInternational Charge Syndrome FoundationMusic Credit: Hope by Scandinavianz | https://soundcloud.com/scandinavianz Music promoted by https://www.free-stock-music.comSupport the show

Sibshops started in Seattle more than 40 years ago. Today they take place across the United States and around the world.We can only make Soundside because listeners support us. Make the show happen by making a gift to KUOW:https://www.kuow.org/donate/soundside

Mike Michaud is the Executive Director of the Miracle League of Connecticut. www.miracleleaguect.org 860-461-1501 miracleleaguect@comcast.net It was great to sit down and talk with Mike! We talked about: The 10th Anniversary of the Miracle League Field (minute 2) The annual Trick or Treat Event (minute 7.50) Johnny's Jog for Charity (minute 9.30) 3 KEYS (sponsored by West Hartford Lock) to be a great Executive Director (minute 11.30) Ronit Bachar Shoham & Scott Franklin (minute 13.40) "I Can Bike" Program (minute 15.40) Sensory Spring Fling (minute 20.20) Amazing Adventures of Dr. Wonderful at Playhouse on Park (minute 26) Mike's favorite teacher (minute 28.20) Empathy vs. Sympathy (minute 30.40) Favorite restaurant and 4 dinner guests (minute 36) Events: First, Last, Best, Worst (minute 40.40) Crazy Questions sponsored Donut Crazy (minute 49) Incohearent with Feeney (minute 58.40) Sibshops - (minute 1.00) Golf Classic on September 20th (minute 1.02) 50th Podcast Celebration at Playhouse on Park on Tuesday, May 3rd (minute 1.09) Shout outs: Directline Media - www.directlinemediaproductions.com WeHa Brewing and Roasting - www.wehabrewing.com John Adams on HBO - www.hbo.com/john-adams/episodes Sibshops - www.miracleleaguect.org/program/sibshops/ Johnny's Jog for Charity - www.johnnysjog.com/ Playhouse on Park - https://playhouseonpark.org/index.html Podcast Sponsors: Donut Crazy - www.donutcrazy.com The Fix IV - www.thefixivtherapy.com West Hartford Lock - www.westhartfordlock.com Keating Agency Insurance - www.keatingagency.com GastoPark - www.thegastropark.com --- Support this podcast: https://anchor.fm/friendsoffeeney/support

As an occupational therapist, I'm often dealing with or having interactions with the siblings of the clients I work with during therapy especially if they are younger in age. I regularly see how excited siblings get when it's time for therapy and their desire to want to participate as well. Unfortunately, the siblings of the children I work with aren't always able to participate and this can lead to confusion, frustration, and feeling left out. And this isn't just limited to just my therapy sessions. These misunderstandings can carry over into doctor appointments, school, and community settings. I'm going to address some commonly reported emotions that siblings of special needs children have and provide you strategies for you to address these feelings. 3 commonly, reported emotions expressed by siblings of special needs children are feeling left out, having to do too much, and inability to express their feelings. Feeling isolated or left out: Siblings of special needs children want to participate and be included in all the fun happenings for the family. Don't we all? This desire to be included is multiplied when their sibling has “fun” therapists who bring fun activities for their sister and brother each week. It's not just therapies at home. If your child has any specialty appointments outside of the home it can feel like they are missing out on a lot of fun from the outside looking in. Action Plan: Schedule 1 on 1 time with each child Find a time during the week with 1 on 1 time with your child providing undivided attention Allow your child to express themselves Allow your child to lead the conversation Make it about them and not the other sibling This time could be as short as 10 minutes the important thing is the intention and taking the time to create this space. Communicate with your child Communicate with your child about an perceived disparities Explain at an age appropriate level what therapies are for Begin to explain Autism and how their sibling may need some extra support as we all need various levels supports throughout different phases of our lives. Find ways to make sure all your children feel loved Explore family activities where everyone can be involved. Have each child be able to participate at a level that is appropriate for them. Feeling like they are asked to do too much/burnout Siblings often take on caretaker or protector roles of their siblings especially if they are older. Some of these role may be requested by you and others the sibling may feel like its their duty. Once common example is if both children go to school together. Your neurotypical child may see their sibling struggling at school physically, emotionally, or socially and they may feel like they got to protect them from other students or from getting hurt. At home, it's common for parent's to feel overwhelmed and ask their child for help. This is not wrong and expected in certain cultures. This can cause frustration and burnout though if these extra tasks become expected or if your neurotypical child has begun to take on a caretaking role for their sibling. This could easily feel unfair and unjust and lead to your child feeling like they can be a kid. Action Plan: Clarify responsibilities If you notice your child is doing more than what is required make sure to clarify what is a child's responsibility and what is the parent's responsibility. Express appreciation Make sure to provide verbal appreciation for the way your kids contribute around the house Self-Check Check-in to see if what you are asking of them is fair Every families values and customs are different Does all your children have the opportunity to explore, learn, and be a kid? Maybe consider ways of possibly expanding your support group if you are feeling overwhelmed. Feeling like they can't express their feelings along with confusion, guilt, or embarrassment. As siblings continue to get older and begin to notice more differences in their siblings behaviors compared to their peers they may feel confused, embarrassed, and that they don't have space to express themselves. When there isn't communication and discussion related to the differences between your neurodiverse child and neurotypical child then your neurodiverse child's behaviors or diagnosis could be perceived as a secret. With this in mind they may also feel like their needs are lesser and that they may not have the right to be “needy”. Also if there is a lack of communication they may not feel like they have the space to express themselves and their frustrations in a healthy manner.  Action Plan: Communicate Teach them about autism at an age appropriate level Stemming Social skills Revisit top from time to time. Allow space to express their honest feelings without judgment and encourage honest communication Consider a counselor and/or support groups If any of your children are showing any distress or struggling consider consulting a mental health counselor. They can help your child express and understand their emotions that can feeling confusing and frustrating. Look for support groups: In Arizona, there is a support group for siblings of children with special needs called Sibshop and it is hosted by Arizona Autism United. These are 1 hour meetings where children ages 7-14 can connect, relate, and talk about their emotions. Currently these meetings are virtual but should return to in-person sessions eventually.   Recap: Siblings of special needs children may feel a variety of emotions due to the complex family landscape. Common emotions/feelings include: 1. Feeling left out, Asked to do too much, and inability to express themselves. Feeling Isolated or left out Schedule 1 on 1 time Child led About them Communicate with child Talk about Autism Let them know why there are differences at home Find ways to make sure all your children feel loved Family group activities Asked to do too much  Clarify what's their responsibility and what's parents.  Words of appreciation go a long way when your children are contributing and helping out. Check in with self to see if what you are asking is fair Unable to express self, confusion, guilt embarrassment Communicate, Communicate, Communicate Teach the siblings about Autism Provide spaces for open communication Consider counseling or support groups like sibshop Resources: Sibshops https://azaunited.org/services/sibshops Arizona Autism United hosts Sibshops which is held on the first Saturday of each month for neurotypical siblings of children with any type of special need.  Siblings must be between the ages of 7 to 14 to participate. Registration is required and your first session is free! Right now sibshop free and is 1 hour and via zoom until they return back to in-person. Washington Post Article: 8 things siblings of children with special needs struggle with https://www.washingtonpost.com/news/parenting/wp/2016/12/20/8-things-siblings-of-children-with-special-needs-struggle-with/ Subscribe Now & Leave a Review Apple Podcasts, Spotify,  Google Podcast, &  Stitcher Visit our Website www.pureheartstherapy.com Follow Us: Facebook: Pure Hearts Therapy Facebook Group: Autism Family Toolkit Instagram: Purehearts_Therapy

In this episode Theresa talks with Sue Levine, Social Worker, and Co-Founder of Family Resource Associates in Red Bank, New Jersey. FRA is  a not for profit agency that  provides services to people with disabilities across the lifespan, helping them realize their great potential. Sue has spent her entire professional career working with children with disabilities and their families. She has conducted support programs for parents and siblings of children with differing abilities since 1979. Among those programs, Susan has coordinated support groups specifically for parents of children with Down syndrome. She has presented on the needs of siblings at national and regional conferences on Down syndrome, spina bifida, and Rett syndrome, as well as for New Jersey school system parent groups. This episode is packed with information about the special needs of siblings of children with disabilities. Sue emphasizes that siblings need three things: 1) information about their sibling's disability; 2) to be able to express a range of emotions safely; and 3) strategies to solve the problems they are experiencing. Sue offers great tips and provides lots of resources for families. Here are links to the resources discussed in the episode:You can find Family Resource Associates at: Family Resource AssociatesSue has co-authored “Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters” with Dr. Brian Skotko. This book, along with other specialty books related to children with special needs, is currently available at www.Woodbinehouse.com. FYI, this publisher may be going out of business later in 2022. The Sibling Leadership Network | Siblings of people with disabilities is the national sibling network for adult siblings Levine and Skotko also have develop a sibling program which is available here: Down Syndrome Workshops for Siblings (siblingslearnaboutdownsyndrome.com) . As Sue discusses in the webinar, this is not just applicable to siblings of individuals with Down syndrome but can be adapted to any group.  Don Meyer, author of the book "Sibshops", has a  website www.siblingsupport.org that may be of interest. Please join us over in the Safe Harbor Podcast group on Facebook, and email Theresa at safeharborpodcast@gmail.com to get on the mailing list and learn about upcoming projects. Also rate and review the podcast to help others find it. Be sure to subscribe so you don't miss an episode. Thanks for listening!!

Amanda Yoder describes what it's like to have much of her life shaped by growing up with her younger brother, Spencer, who has autism. The uncertainty and violence that is often a reality in families living with autism lead to a life of anxiety and hiding behind a mask of perfectionism. Upon going to college, Amanda began to find out who she really is and at age 22, she still wonders what her future with her brother holds. Andréa Vugteveen is a Sibshops Facilitator, Children and Youth Coordinator/Volunteer Coordinator for Circles Grand Rapids, Social Work Lab Instructor at Calvin University, and Spiritual Direction Apprentice. Her purpose and passion is to walk alongside people, empowering them to thrive. One of her favorite ways to live out her purpose and passion is through her role as a Sibshops Facilitator. Sibshops are monthly peer support groups for children and youth who have siblings with special needs. She has created safe and engaging communities of support, encouragement, understanding and education for sibs in the Grand Rapids area for the past eight years. She's looking forward to expanding the impact of Sibshops by bringing groups to Ottawa County this summer. TEDxSanAntonio - Alicia Arenas - Recognizing Glass Children https://www.youtube.com/watch?v=MSwqo-g2Tbk Host, Lara Kitts Website, Flight Club and Blog https://www.larakitts.com/ Facebook https://www.facebook.com/larakittsllc Instagram https://www.instagram.com/lara.kitts/?hl=en The Sibling Support Project https://siblingsupport.org/ Founded in 1990, the Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns. Our work spans books and publications, online communities for teen and adult siblings, and workshops and training. We are best known for helping local communities start Sibshops—lively peer support groups for school-age brothers and sisters of kids with disabilities and health concerns. Grand Rapids, MI Area Sibshops Facebook page https://www.facebook.com/siblingsgroup/ Ottawa County, MI Area Sibshops Facebook page https://www.facebook.com/Ottawa-County-Sibshops-110430560572443 --- Send in a voice message: https://anchor.fm/larakitts/message

In this episode, I sit down to speak with Peyton Waszkiewicz, who is a young teen, sharing her story of what it was and is like growing up alongside her sister with a disability. She shares her story and her experiences, and how they've molded her into who she is today. Highlights from this episode: Peyton describes what challenges she faced growing up and how they have changed as she's gotten older. She discusses what unique things she's gained from being an older Sib and shares how she couldn't imagine life any differently. She describes how being involved in Sibshops has changed her life and helped her connect with other people who "get it". If you'd like to find out more about our SibShops or Resources we can help provide, head here: >>More Information on SibShops At Breakthrough>Click here to get your copy!

Rachel and Christie talk with Emily Holl of the Sibling Support Network about the challenges for siblings of kids with disabilities both visible and invisible. Emily talks about SibShops, a worldwide program, that offers support to siblings of kids with special needs. Emily also offers tips on how parents can best support these siblings and help them voice their own feelings and fears. Emily Holl is the Director of the Sibling Support Project. Emily is a social worker, author, trainer, and sibling. Since 2003, she has worked in the disability field and has provided workshops, training, and groups for siblings, families, and individuals with disabilities. Emily has served as a board member of the national Sibling Leadership Network (SLN), and she founded sibsNY, the New York state chapter of the SLN. Emily has written about her own sibling experiences in blogs, magazines and books such as Thicker than Water. Emily was an author and a co-editor of The Sibling Survival Guide: Indispensable Information for Adult Brothers and Sisters of People with Disabilities, published by Woodbine House in 2014. Click here for full show notes. References: SibTeen Facebook Group Sib20 Facebook Group Adult Sibling Facebook Group Find a SibShop near you How to Talk So You Kids Will Listen by Adele Faber and Elaine Mazlish If you like this episode, please consider writing a review and stay in touch by subscribing to our podcast and following us at: Twitter @podcastchaos Facebook https://www.facebook.com/constantchaospodcast Instagram: constant_chaos_podcast www.constantchaospodcast.com We welcome your feedback: constantchaospodcast@gmail.com

ONCE UPON A GENE - EPISODE 072 The Importance of Early Intervention with Kindering CEO Lisa Greenwald Early intervention or birth to three are the vital services kids can receive in the beginning of their diagnosis journey. Dr. Lisa Greenwald is the CEO of Kindering, a licensed language and speech pathologist, holds a PHD in communication science and disorders and an executive certificate in non-profit leadership. She's answering all the questions you may have about early intervention and how to access it. EPISODE HIGHLIGHTS Can you share what Kindering is? Kindering is a non-profit neurodevelopmental center and we offer a variety of programs, including birth to three early intervention which supports infants and toddlers who may have missed developmental milestones or who have a new diagnosis. About 85% of the brain's growth happens in the first three years of life, so early intervention is impactful and can make a big life-long difference. We will also provide a developmental evaluation for any family that has concerns or questions and a doctor's referral is not needed.  How did you get involved with Kindering and what drew you to the field? I started out as a speech therapist working with adults and was interested in communication in general. In the efforts of making a difference early on and focusing on the brain's plasticity at a younger age, I worked my way down to birth to three age. My own child benefited from Kindering services and school special education services. Through his connection with Kindering and how he's benefited has been a key part of why I'm here, the perspective I have and why I want to be there for the kids and families that need us.  What roadblocks do you see in early intervention right now? During the pandemic, people stopped going to well child visits, which is where developmental screening happens in our system of care. Families are challenged to realize they can benefit from services without the developmental screening.  How can people outside of the Seattle area use The Fathers Network and Sibshops as a resource? The Washington State Fathers Network is a network of dads experiencing the journey of raising a child with special needs who can benefit from peer-to-peer networking and support. They have chapters that meet locally for different events and to share resources and information. Emily Holl runs the sibling support program and travels all over the world teaching communities how to offer sibshops. Sibshops specifically supports the siblings of children with disabilities and they're fun, lively workshops to network and have fun. LINKS AND RESOURCES MENTIONED The Rare Disease Truth #rarediseasetruth https://twitter.com/hashtag/RareDiseaseTruth Kindering https://kindering.org/ Kindering tele-evaluation overview https://kindering.org/portfolio-items/developmental-evaluations/ Washington State Fathers Network https://fathersnetwork.org/  Sibshops https://siblingsupport.org/sibshops/ Kindering Virtual Play Pass https://kindering.org/portfolio-items/play-pass/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/ Leave a voicemail https://effieparks.com/speakpipe

In this episode, I sit down to speak with Jess Kruger, who is not only a member of the Breakthrough Team, but also an adult Sib to her two brothers diagnosed with Autism. You'll get to listen in as she tells her story of what it was like for her growing up and not only her experiences, but the emotions she faced throughout her childhood and what she continues to face now. She even dives into stories from our very own SibShops and describes the intentional effort to help these children and young adults recognize their emotions and cope with them while helping them to know they aren't alone on their journeys. Highlights from this episode: Jess describes her unique experiences growing up alongside both her older brother, Matt, with Autism and other mental health diagnoses, as well as her younger brother, Nick, and how those experiences differed as she navigated hospitalizations, behavioral outbursts, family trips, and everything in between. How she learned to navigate the challenges she faced as a child and how those challenges have morphed as she gets older and responsibilities change. How finding SibShops has helped her to not feel alone, as well as make intentional impact by mentoring younger Sibs facing similar experiences. If you'd like to find out more about our SibShops or Resources we can help provide, head to: https://www.breakthroughptli.com/sibshop/ !

ONCE UPON A GENE - EPISODE 057 SLC13A5 - TESS Research Foundation with Kim Nye Kim Nye is the mother of four children and the President and Co-Founder of the TESS Research Foundation, a nonprofit organization on a mission to find better treatment options and a cure for SLC13A5— a rare disease that affects two of her kids. EPISODE HIGHLIGHTS Tell us about your children with SLC13A5 and about where your journey began. We were living in England, in graduate school and we were having a baby girl. I had a typical pregnancy, was induced at 41 weeks and had a beautiful, perfect baby girl named Tessa. At one day old, we noticed she was having trouble feeding and turned blue when she had her first bath. At some point it became apparent that something was wrong and she was taken to intensive care, where our journey began. The next ten years was a series of misdiagnosis and inaccurate diagnosis. It was at one point she was thought to have had a stroke resulting from seizures. Her seizures were under control within a few weeks after being in NICU. She was on seizure medication that seemed to be working and all of her tests looked good. At her next appointment, she was diagnosed with benign idiopathic neonatal seizures which meant they didn't know why she was having them. At six months old when it was suspected she no longer needed to be on her seizure medication, she had a seizure and we weren't able to control them again over fifteen and a half years. By the time she was in preschool, she was diagnosed with catastrophic epilepsy and she spent a lot of time in the hospital. Her seizures were so severe, no one was confident she'd live to kindergarten. Her development was also noticeably off and still doesn't speak more than a few words to this day. In 2013, I gave birth to my fourth child, a little boy named Colton. Just like his sisters, he was healthy when he was born and passed all his initial baby tests. When he was about 12 hours old, I started noticing his trouble with feeding, his color wasn't quite right and then he started having seizures.  Does it get harder to manage everything the older your kids get? My kids are now 16, 13, 11 and 7 year old. Having a tiny baby with seizures is so stressful that there are things that actually get easier as they get older. You can better recognize seizures and you find a therapy and treatment rhythm that works for your family. What's much harder is that kids get bigger and not as cute to the general population. It was easier when I had a cute little preschooler and it's harder to have a support team when you have a young woman. And at some point, you shift from a worry about hitting milestones to what will happen to your child when you die and how much will fall on my two healthy children to provide their sibling's care.  What do you do for Lily and Maggie to make them feel special? If I can pull off a normal childhood for them, that is a success. Each summer we have a Moggie and a Mily week that's not anything extravagant, but time for just Lily or Maggie and I to do something they want to do. We try to carve out small moments anytime we can.  How do you keep your marriage from being transactional? We weren't good at it in the beginning. We didn't make time for dates, I dropped out of graduate school and my husband was growing his career. We fell into stereotypical roles and didn't make much time for each other because there was so much going on. Now, we make more of an effort to do things together.  How do Maggie and Lily deal with the day-to-day having two siblings with a rare disease? They are really lucky to have one another. It's nice for them to have someone going through the same experience they are having two siblings with significant needs. They are lovely with Tessa and Colton and the four of them are just siblings. They have a strong sense of empathy and are really good reading people's needs and emotions because they have two siblings that require that.  The TESS Research Foundation has been awarded the CZI Rare As One Initiative. What's going on right now with the fund? We feel so lucky to be a CZI Rare As One Grantee Organization. It's really an honor. It's a capacity building grant and the idea is to help us build internal infrastructure so we're more sustainable. In addition to funding, we also get training that helps us run the nonprofit. We're learning a lot about growing our research and family network, having good governance and treating the nonprofit as a professional organization. We started out asking friends and family for donations and we've grown through newly diagnosed families reaching out to their networks and we've applied for other grants and funding. We raise money to create model systems because SLC13A5 was a newly discovered disorder and nothing was in place when we started. LINKS AND RESOURCES MENTIONED TESS Research Foundation https://www.tessresearch.org/ Sibshops https://www.siblingsupport.org/about-sibshops Undiagnosed Disease Program https://www.genome.gov/Current-NHGRI-Clinical-Studies/Undiagnosed-Diseases-Program-UDN CZI Rare As One https://chanzuckerberg.com/science/programs-resources/rare-as-one/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/

Today we're kicking things off with Abilis, a nonprofit serving more than 700 developmentally disabled individuals and their families. We'll learn more about an internationally renowned program Abilis is now offering called SibShops, combining recreation, discussion and information for siblings who endure the good (and sometimes uncomfortable) parts of having a sibling with a disability. Then we'll meet Sacred heart University's VP for Advancement and new Chief Diversity & Inclusion Officer to talk about how SHU is opening a new chapter aimed at broadening opportunities for both students and staff - and inviting you to support SHU's Jackie Robinson Scholarship Foundation with a chance to hang out virtually and celebrate the 20th Anniversary of the famed Subway Series with Joe Torre and Bobby Valentine at 'SHU And 42'. And we'll close talking about all the positive effects of exercise on your brain with Dr. Wendy Suzuki, who is poised to host a Zoom Workshop on the subject later this week for Newtown's Maplewood Senior Living community.

Im so excited for this weeks show featuring two inspiring women who felt called to make a difference for children with Autism. Meet Denise Schamens and Chelsea Budde, the unstoppable lady duo that co-founded Good Friend, Inc., a 501(c)(3) public charity dedicated to creating autism awareness, teaching acceptance of differences, and fostering empathy for individuals with autism. Good Friend, Inc. has reached more than 53,000 people directly with its autism awareness-acceptance-empathy message since 2007. Denise Schamens has three children, two of whom are adults with special needs. Due to her first-hand experiences, she served for 10 years as a school district family engagement liaison for CESA #1. Her insight into the needs of children with autism spectrum disorder gave rise to Good Friend, Inc. Denise has served as its co-founder, vice president, and creative director since 2007. Her passion lies in her creative pursuits within and outside the organization, which include editing and directing four short films and designing theatrical sets. She is also a First-Generation Facilitator for Sibshops, a university guest lecturer and conference presenter. Chelsea Budde, mother of two neurodivergent adult children, co-founded nonprofit organization Good Friend, Inc., and serves as Good Friends Executive Director. She describes herself as an interpreter of autism for neuromajority humans, in addition to being a trainer, she's also a writer, university guest lecturer, and conference presenter. To learn more or get involved: Good Friend, Inc. https://goodfriendinc.com/ Facebook https://www.facebook.com/GoodFriendInc Instagram https://www.instagram.com/goodfriendinc

Ten years ago, Chelsea King discovered that the twins she carried had a potentially deadly secret. The months that followed were full of doctor's appointments, a move to another city, bed rest, and concern. Tune in to hear Chelsea King talk with Host Anna Jaworski about what it was like for her to go from diagnosis through surgeries, and into 2020. Since Chelsea's twin was born with two major congenital defects (tetralogy of Fallot and Duane's Syndrome), she has had many medical procedures and she understands the importance of support. In this episode, she talks with Anna about where she found support, how she's giving support today, and the support she believes she still needs to find.Pages and Episodes mentioned in this program:CongenitalHeartDefects.com Camp Information PageSiblings in the CHD Community -- "Heart to Heart with Anna" featuring Don Meyer and SibShopsSibShops informationPlease visit our Social Media and Podcast pages:Apple PodcastsFacebookYouTubeInstagramIf you enjoy this program and would like to be a Patron, please check out our Patreon page Support the show (https://www.patreon.com/HearttoHeart)Support the show (https://www.patreon.com/HearttoHeart)Support the show (https://www.patreon.com/HearttoHeart)

"I see the siblings. I see them as champions of their families. I see their need to succeed as to take care of their family. I see these wonderful children who are mini caretakers, and I want to take care of them. I want to make each one of them feel like they are #1, even if only for a short time. I want to share with them coping skills and introduce them to peers they can rely and lean on when they need it. I want to give them a breath, since the pressures of their family life can feel suffocating. I want to give them a time to just be and let it all hang out!" - Mo LangleyToday we are joined by Mo Langley of Sandy Feet Initiative OC, a nonprofit that supports the siblings in a special needs family. It's a fantastic, inclusive organization, based in South Orange County, California. Sandy Feet Initiative has adopted the Sibshops model for facilitating programs for siblings. They take it one step further, they give the kids a coping skill; and a special one for their team; the gift of the ocean. Mo and her team truly empower the kids who attend and give them a fun, safe place to be with other kids who understand the challenges, lessons and humor of living with special needs siblings. You can learn more about Mo and her work at http://sandyfeetoc.org.

Don Meyer, Founder of The Sibling Support Project and its signature program, Sibshops, talks about the importance of peer support — and how to find it.  More about Don:  Don Meyer is the recently retired director of the Sibling Support Project and the creator of the Sibshop model.  During his 28 years with the Sibling Support Project, Don conducted workshops and trainings in all 50 states, throughout Canada, and in ten additional countries leading to the creation of 450 Sibshops worldwide.  He is the author or editor of six books on sibling issues, including Views from Our Shoes, The Sibling Survival Guide, and Sibshops: Workshops for siblings of children with special needs.  The online Facebook groups Don created--SibNet, Sib20, and SibTeen—provide peer support to thousands of brothers and sisters every day.  In 2019, Don received the Sibling Leadership Network's Lifetime Achievement Award.  He can be reached at donmeyer@siblingsupport.org More books mentioned in this episode:  How to Talk So Kids Will Listen & Listen So Kids Will Talk Riding the Bus with My Sister The Ride Together Siblings (This one is by Kate Strohm, who will be a featured guest in an upcoming podcast episode! Stay tuned!) -- For more information on The Center for Siblings of People with Disabilities, visit www.siblingcenter.org. To take advantage of our partnership with BetterHelp, visit BetterHelp.com/siblings. 

ONCE UPON A GENE - EPISODE 013 Sibling Support On the topic of siblings again this week, we'll be talking about the sibling perspective and the support available with Emily Holl, the Director of the Sibling Support Project. Emily is a social worker, writer, trainer, and sibling. Over the past 16 years, she has provided workshops, training, and groups for siblings, families, and individuals with disabilities. She has presented and written extensively on sibling issues, has conducted and published sibling research, and has facilitated Sibshops for young brothers and sisters of children with disabilities.  EPISODE HIGHLIGHTS Tell us about how the Universe brought you to the world of sibling support. The short answer is that I myself am a sibling and I have an older brother, Peter, who has an intellectual disability. He really is at the center of many personal and professional decisions and I'm really grateful to him because if it weren't for him, I wouldn't be doing this work that I love so much. I wouldn't have met so many other incredible siblings who have a lot of insight and wisdom to share.  Did you join a sib shop when you were young? I travel a lot and have the pleasure of meeting so many other adult siblings. I echo their same sentiment that I wish there were Sibshops when I was a kid. I didn't discover Sibshops until much later when I was a young-ish professional working in the disability field. A colleague of mine found Sibshop facilitator training by Don Myer and thought it would be a good idea for us to attend. I attended that training and it really changed my life because I not only realized there's a whole organization dedicated to supporting brothers and sisters like myself, but through that training I was able to understand my own sibling experience in a much broader context. I recognized that my experience shared so many elements with other brothers and sisters and from that point on it really inspired me to do everything I could to create sibling support for the families we were working with.  I haven't imagined my child as an adult not knowing what to do if they had to take over.  Especially as parents with young children, it can be daunting to consider the future and consider a time in the family's life when we as parents are no longer able to care for our children in the way we traditionally have. For the best reasons and with the best intentions, parents often don't share information with their typically developing children. We always encourage parents, even of young children, to keep that door of communication open so that when the time does come to talk about future planning, it's not uncharted territory, not a taboo subject undiscussed by the family. Even if parents don't have answers, communication can go a really long way. They may not want to burden typical developing children with thoughts of future caregiving, but siblings are already thinking about the future. Making that an okay topic to discuss is an important way for parents to support siblings. What do you do now with Sibshops? Don Myer retired and there was a national search for this position and I was the very lucky person honored to be offered the position. We moved from New York City to Seattle where the Sibling Support Project was founded in 1990. There's a long history of self and parent advocacy in the United States and we have them to thank for the creation of the disability services and supports that exist today and for many of the laws that reinforce them. As it turns out, there's also a lesser known history of sibling advocacy and sibling support and that really starts with Don Myer who started the Sibling Support Project. Don created a Sibshop which is central to the work we do today and to the support that thousands of siblings receive across the country and around the world. Fundamental to the Sibshop model is providing information and support to young brothers and sisters in a highly recreational and fun setting. We travel the country and train organizations, children's hospitals, disability service providers, parks and rec departments, schools and any other place you may find children with brothers and sisters with disabilities. We train organizations on how to support young kids in a way that's meaningful, fun and really speaks to kids. How do organizations and programs get in touch with you to organize a Sibshop? We're always grateful when organizations find us because they notice siblings are left out and they want to change that. A lot of times, people research the Sibshop model and will get in touch with us to learn more about it or they have seen a Sibshop at another organization and want to recreate that for their organization. How long and how often are Sibshops? There's a lot of flexibility in the Sibshop model so organizations can offer Sibshops on varying schedules. What we ask is that people who are trained and who are certified and offer something called a Sibshop really ensure the program upholds our best practices, what we call the Sibshop Standards of Practice. These are our best practices to ensure a parent sending a child to something called a Sibshop is sending them to a program that is aligned with our model and grounded in our mission and values. What can we do as parents to make sure we're balancing the attention we're giving to our children? Make sure you're providing siblings with age-appropriate and accurate information from a variety of sources. Particularly with school-age children, they need to have information about the disability to explain it to other kids who may not ask questions in the nicest way. For younger children, providing information should be ongoing as their understanding of the world becomes more sophisticated. Leave an open door for children to ask questions. Provide siblings with opportunities to meet other siblings--  Sibshops is a great way to do that. There are other agencies that host walks and picnics and that's also a great opportunity to carve out time for siblings to meet each other. Beyond open communication and the principles of active listening, allow siblings to express the good and the not-so-good parts of having a sibling with a disability and support them in saying that out loud. Set aside special time with typically developing children. A little goes a long way. How old do kids need to be to attend Sibshops? Typically they're for kids ages 8-13. There are Sibshops around the country that are changing that a little bit to include teenagers, so they're modifying their programming to include slightly older kids or even slightly younger. Have you found that most siblings grow up to be in a compassionate field? What we know from research is that siblings go into helping professions much of the time. We know typically vocation is one of the perks that siblings identify, based on the experience with their brothers and sisters, that they felt really drawn to a helping profession that gives them a lot of gratification. Siblings who don't go into helping professions often give back another way.  CONNECT WITH EMILY Email: emilyholl@siblingsupport.org LINKS AND RESOURCES MENTIONED Sibshops at Kindering Thicker Than Water: Essays by Adult Siblings of People with Disabilities The Sibling Survival Guide: Indispensable Information for Brothers and Sisters of Adults With Disabilities Sibling Support Project Start a Sibshop Sibshop Standards of Practice Sibshop Directory How to Talk So Kids Will Listen & Listen So Kids Will Talk TUNE INTO THE ONCE UPON A GENE PODCAST Spotify Apple Podcasts Stitcher Overcast   CONNECT WITH EFFIE PARKS Website Twitter Instagram

Welcome back everyone! Thanks for checking out an all new episode of "A Piece of Hope" podcast presented by Appleseeds Behavioral Center. On this episode we close out our sibling series as one of Appleseeds' very own RBT Mr. Malachi joins host Andrew and co-host Nicole! This podcast dives deeper into what it's like to go through the journey of being a sibling of someone with an Autism diagnosis. Be sure to like and subscribe to the podcast and check out all of our previous episodes!

Hey everyone, thanks for checking out another "A Piece of Hope" podcast episode presented by Appleseeds Behavioral Center. In todays episode we continue our sibling series as host Emma is live in Florida from one of the nations SibShops workshops! In this episodes we dive into how SibShops started, who can benefit from the workshops, and what a typical SibShop experience looks like! Be sure to like and subscribe to the podcast as well as like and follow Appleseeds Behavioral Center and SibShops on Facebook, Instagram, Twitter, and Pintrest!

Johnna Hensley is someone who I immediately liked when I met her. She's super kind. She laughs at my jokes. She's easy to talk to. She's a good listener and a deep thinker. She also loves her family fiercely. Johnna and her husband Ryan have three children. One of them is special needs. She is a mother living in two different worlds right under the same roof. I wonder how she does it. I'm so excited to have Johnna on the show to find out. Johnna Hensley is a native Texan, a writer, and a lost sinner who found hope and redemption in Jesus. She is the wife of an energetic and giving man, and a homeschooling mother to three wild and sweet little boys. Her life is nothing as she expected it would be, but finding beauty in the broken is what makes it worth living. You can find Johnna Hensley here: Johnna HensleyJohnnaHensley on Instagramjohnna@johnnahensley.com Show Notes [04:12] Johnna made a video with her son Hayden. They did a CrossFit parody. [07:28] Johnna's son Hayden has spina bifida and he has a tracheotomy to breathe. [07:40] He sleeps with a ventilator at night. [09:00] Johnna and Melissa went on a hayride. [09:58] Johnna has three boys. She took her sons to a pumpkin patch. She carried Hayden to the hayride. His issues are physical, but his mind is on point. [15:27] At about 18 weeks, they found out there might be a problem with their baby. He had spina bifida which means the spinal cord did not close all the way. Johnna and Ryan were 24 years old. Their entire world crashed into the ground. [19:57] We declared that this doesn't change anything and we aren't going to treat him differently. [21:35] Johnna was against having more kids. She heard from God that what ever baby he gave her it was his glory not hers. [23:20] She had her second son, and he was perfectly healthy. Her third was her bonus baby. [24:54] Raising the boys is like being in two different worlds. [27:14] They booked a Disney cruise and Hayden was sick. They didn't know what to do. Her neighbor assured her it was okay to leave Hayden and take the other kids on the cruise. She felt really guilty. Then they actually had fun. [30:07] It's challenging for Johnna and her husband to make sure that they are doing enough for everybody. [33:01] There can be resentment for some of the children. Sibshops helps siblings of special needs kids. There is a camp for siblings of special needs children. [35:01] Now that Hayden is older, he is honest about how he feels about the situation. [39:16] There was a time when I was taking things out on Ryan. Then we implemented Sunday family meetings and lay everything out so that the logistics are all on paper. [40:32] We have a night nurse that comes in at 7 pm. It's kind of weird trying to catch up on your day when there is someone else in your home. [42:06] It's challenging for Johnna to have other people in her home when she is trying to unwind. It's something she's still getting used to. [42:37] Johnna and Ryan understand each other on a level that will never change. There are some things no one else will ever get. [44:16] To keep the romance alive Johnna and Ryan also tried Date Night In which was a gift from a friend. [46:15] Johnna goes to the school answers questions about Hayden's condition, and she is writing a book. They decided to be real honest with the kids and get it all out in the open. [47:57] It's perfectly lovely for a child to ask Hayden his name and ask what is the story with the chair. [49:22] Hayden has taken Johnna out of her comfort zone. She calls him the VIP. [51:35] Mom's struggling, need to find their tribe, even if it is through a Facebook group. Special needs parents just get it. [54:48] Being a special needs mom is like canoeing up your driveway every day while everyone else gets to drive. Sometimes you need to throw a special needs mom a paddle and help them. [55:42] A friend inviting themselves over for game night is one of the nicest things that someone has done. [59:54] Johnna answers Melissa's lightning round questions. Thanks for joining us on Ordinary People Ordinary Things. Be sure to subscribe to our podcast on iTunes and leave a nice review. Just like your mother taught you. Links and Resources: Podcast Web Page Facebook Page @MsMelissaRadke on Instagram @msmelissaradke on Twitter This Sucks But God Is Good (online course) Eat Cake. Be Brave. Eat Cake. Be Brave. Book Club Date Night In Kodas Kamp The SibsShops

Research: Rebecca ArmstrongPresenter: Val OckendenProduced by Louise Ratcliffe and FreeFM89.0GuestsCarolyn JurySupport and Information Co-ordinatorI have been involved with Parent to Parent for 10 years, first as a requester looking for support and information, then as a volunteer support parent and now as the Support and Information Coordinator at National Office in Hamilton. I have previously worked as a medical professional, but in recent years I retrained as a counsellor, graduating in 2015 with a Bachelor of Applied Social Science from Wintec in Hamilton.Ruth TaylorExecutive Co-ordinatorRuth has been connected with Parent to Parent since 2008 as a programme coordinator and trainer. She is currently responsible for coordinating a range of workshops, seminars and support events, including the unique SibSupportNZ programme.Jo EastwoodExecutive ManagerJo is passionate about providing the right tools to help people with disabilities and healthimpairments live the lives they choose. With a Diploma in Comprehensive Nursing (1989) and working as a Registered Nurse in Australia and New Zealand, Jo met her desire to help people.Programme SynopsisConnecting parents - Parent to Parent operates a parent support network for families raising a child with a disability in New Zealand. We have a network of more than 600 speciallytrained volunteer support parents. We connect families with support parents who have a family member with the same/similar disability or issue. The role of the support parent is to be the ‘listening ear' who can empathise and understand the challenges and joys of raising a child who is different.Sibling Support –The longest relationship a person with a disability has is with their brother and/or sister. Living with a brother or sister who has a disability can be a blessing and a challenge. The SibSupportNZ programme offers young people support to thrive in their own unique family environment through SibCamps, SibShops and SibDays. Our SibSupport programmes are run by facilitators who are assisted by leaders who have also grown up with a sibling with a disability, again sharing that ‘lived experience' level of understanding.Information Service - Our dedicated research team provides free, researched, evidencebased information to families, and those involved in a family's care, on nearly 4,000 conditions each year, from the very rare to the more common. The information is designed to be easy to understand, written in plain English (also available in different languages) and is tailor-made for your child's individual condition or issue.There is no limit to the number of requests a parent can make for medical conditionsthemselves and related-issues, from diagnosis to adulthood. Parent to Parent can provide information for early childcare learning centres, schools, workplaces and any organisation that works with, and for, people with disabilities and health impairments.Music“Retail Blues” by The Mutes (from Mars)Linksthemutes.bandcamp.comfacebook.com/themutesfrommarsenablinggoodlives.co.nzSafesquaresParent to Parent New Zealand IncAltogether AutismCare Matters or 0508 236 236 freephone service for carersMana Whaikaha – MidCentral only

Don is one of the world’s leading experts on siblings, and has supported siblings for the last 35 years. Don Meyer, Director of the Sibling Support Project.  The Sibling Support Project is a national program in the United States, with international presence, dedicated to the millions of brothers and sisters of people with developmental disabilities. The program is supported by Washington state’s largest early intervention center, the Kindering Center.   Why Are Brothers and Sisters So Important?   Paraphrasing from the podcast, Don Shares:   Anything we can say about being a parent, we can put ditto marks underneath for siblings. The research says siblings have parallel experiences to their parents. But, when we look at the services, and considerations that siblings get - siblings get the short end of the stick. In the USA, there are 200-300 people that have full-time jobs to support parents, there is 1 person with a full-time job supporting siblings (and that is Don). Brothers and sisters have the longest lasting relationship with a person that has a developmental disability. This relationship is lifelong. When mom and dad are no longer available the brother and sister’s will make sure their sibling will live a dignified life in the community. No one logs on more moments and minutes with their brother or sister. No one has a greater impact on the social development of a person with a developmental disability.     Why Are Siblings Underserved?   Paraphrasing from the podcast, Don Shares:   Siblings are off the organization’s radar screens because they not squeaky wheels. As siblings outlive their parents service providers are beginning to realize there are these brothers and sisters out there.   If you want to ensure a good long-term outcome for people with disabilities then invest in their siblings because they are going to be there in the long haul.   There is reason to believe that intervening with siblings, even young siblings, has a benefit to everyone.       How Can Service Providers Invest In Siblings?   Paraphrasing from the podcast, Don Shares:   Service providers can create initiatives that specifically reach out to brothers and sisters, and they can change their policy to explicitly invite brothers and sisters.   Provide siblings information that they think is important. Brothers and sisters have a lifelong need for information. This is a parallel that siblings share with parents.   How do siblings get their information? They are lucky if they get it from their parents. Educational materials need to be prepared specifically for siblings.     Sibshops   Don goes around the world and shows people how to start Sibshops; peer support and education programs for school aged siblings that have a brother or sister with a developmental disabilities. There are 350 Sibshops worldwide, including in the USA (250), Canada (30), Iceland, Ireland, and Japan. Sibshops got their start in 1982, and Don has been training people on how to run Sibshops since 1990. The typical Sibshop age spread is 8-13 years old. This age spread is tweaked all the time – sometimes as low as 6 years old, and some organizations even have teen Sibshops.   One of the biggest benefits of Sibshops that Don has observed is the peer to peer support and connection with other kids that are walking down a similar path. Don has met many siblings that don’t talk to another sibling until they are in their 40’s! It is unheard of for a parent to wait 40 years before meeting another parent with a child that had a developmental disability. But, this is the reality with siblings. (In my own experience, I didn’t connect with another sibling until I was in my late 20’s. Also, I recently facilitated an adult sibling meeting and it was the first time 30% of  the group had ever connected with another sibling.)   Don shares, “We are giving young siblings a chance to meet young siblings, learn about the services their brothers and sisters are getting, and to learn how others are dealing with sticky situations. We have designed Sibshops to be fun, because they are for kids. We have a celebration of contributions made by brothers and sisters, and we mix content activities with recreational activities.”     The University of Washington has researched the effectiveness of Sibshops and found: Over 90% of respondents said they had a positive effect on how they felt about brother or sister. 2/3 of respondents were taught coping strategies. 94% said they would recommend Sibshops to others. 3/4 of respondents said Sibshops impacted their adult lives.   Don Shares, “(The value of Sibshops is…) to be in the community of people who get it. To vent in a non-judgmental forum, to know you are not alone, and learn about resources and strategies.”     On the podcast, Don shares the unique concerns and opportunities that he has observed after interacting with 1000’s of siblings around the world. The list includes concerns like guilt and embarrassment, but also includes opportunities like maturity and diversity. I recommend you take a listen to the podcast to hear all of Don’s insights.   This podcast is packed full of resources for siblings, which are all listed below in the resource section.   A big thank you goes out to Don for joining us on the podcast and sharing his work and insights on siblings!     Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.     Love & Respect, Eric         Resources:   Social Networking Groups for Siblings: Sibnet Adults Click Here Sib Teen Click Here     Sibshop curriculum Click Here The Sibling Survival Guide, created with Sibling Leadership Network. Click Here The Sibling Slam Book – by teen sibs for teen sibs. Click Here Views From Our Shoes – collection of essays from young siblings. Click Here Thicker Than Water – collection of essay from adult siblings Click Here   Being the Other One, by Kate Strohm Click Here Riding The Bus with My Sister, by Rachel Simon Click Here Special Siblings, by Mary McHugh Click Here   Paper: What siblings would like parents and services providers to know. Click Here      Contact Don Email: info@siblingsupport.org Phone: 206-297-6368     If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes       The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!   Click Here To Listen on iTunes

Six BY YOUR SIDE therapists went to the official SibShops training where they learned how to facilitate a workshop for kids who have a sibling with special needs. Hear these therapists talk about what kids can expect during the workshop, the benefits of giving these kids their own time, and first-hand accounts of being someone who has a sibling with special needs.

What can we learn from siblings of CHD survivors? How can we help siblings and how important is it for them to be there when a brother or sister is in the hospital? Tune in to find out!Support the show (https://www.patreon.com/HearttoHeart)