When it comes to finding the right language to use in this advocacy space, it can be tricky.. to say the least! Do we go with person-first or identity-first language? Should we say disabled or differently abled? And how can we use language to empower our kiddos with Down Syndrome? We’ve done a lot of learning (and unlearning!) to try and figure this all out. And as women who do not have any disabilities or diagnoses, we know we still have a long way to go!
Read MoreIn the midst of moving (and yes all three of us are moving this month!), we feel unorganized and uncomfortable, and we know our kids must feel it too! So how do we help our kiddos with Down Syndrome transition when we’re still working on it ourselves? We don’t have all the answers but do we have some of our favorite “social story” apps + quite a few mistakes for you all to learn from! So friends, sit down and chat with just the three of us about our decisions to move and all the things we’re doing (or should be doing) to help our kiddos transition!
Read MoreNot only is Jen Bartz a mother to three, she is a narrative shifter in the healthcare community, especially when it comes to palliative care for our medically-complex kiddos. After her son James passed away, Jen and her husband were inspired to create Hero’s Path Palliative Care. Hero’s Path is a non-profit organization that exists to “empower children with serious illness to live fully by providing outstanding, customized palliative care.” Jen’s heart for children receiving palliative care is powerful. That’s why we’re so thankful she’s here to share how we can support and advocate for these families!
Read MoreWhen Micha and her family moved across the country this summer, she realized it might be time to shift her son’s classroom setting as well. In this week’s episode, Micha’s discussing her decision to place Ace in a more restrictive classroom environment and we’re answering lots of hard questions about school for our kiddos with Down Syndrome.. Is inclusion really always the best option? What if you don’t have the access or opportunity to pursue inclusion? Are you no longer an advocate if you choose a non-inclusive setting for your child?
Read MoreAfter giving birth to her daughter with Down Syndrome, Michelle Sie Whitten noticed a gap in medical research and quality healthcare for people with DS. And from that moment on, she sought to fill that gap by co-founding the Global Down Syndrome Foundation -- the leading organization dedicated to research, medical care, education, and advocacy for people rockin’ an extra chromosome! We’re so grateful to have her on the podcast for a conversation about the beginning of Global, the “Be Beautiful Be Yourself” fashion show, DS in the media, and so much more!
Read MoreThis week we’re sharing a special recording we did at a recent event with the We Are Brave Together community, hosted by Jessica Patay. We Are Brave Together is “passionate about supporting, serving, and inspiring Special Needs Moms.” Most importantly, they want you to know that you are not alone, friends! That’s why today we’re sharing our “everything’s going wrong” moments and how we reacted to them.. gardening, grieving, and sometimes giving up. The stress of this year has left us feeling so much weight on our shoulders — let’s help each other carry it.
Read MoreIf you’re anything like us, you may have wondered (AKA worried) about your child’s speech! How much therapy do they need? What can we do at home? The questions never end! That’s why today we have Shandy Laskey (speech language pathologist, functional nutritionist, and feeding specialist) on to chat about all the things our kiddos need before even thinking about speech therapy... What on earth is the gut-brain connection and why do we actually go gluten/dairy free? Shandy is here with all this information as well as plenty of recommendations! Take notes, friends!
Read MoreWhat do you do when your pregnancy isn’t what you thought it would be.. when Covid-19 and a shocking diagnosis leave you looking for answers? Well if you’re anything like Abby Green, you discover that what really matters is not the celebrations and expectations, it’s that you love your baby no matter what. Today we have this pregnant lucky mama on to tell us all about her pregnancy in a pandemic, receiving a Down Syndrome diagnosis alone, and joining #TheLuckyFew before even giving birth. We’re also touching on the shock and confusion that comes with a Down Syndrome diagnosis, who to tell and when to tell them, and how to navigate it all in the middle of Covid-19. Thinking of all you mamas who are pregnant during this wild year! We see you and we are cheering you on!
Read More“Who decides how smart you are?” Dr. Sarathy is back on the show to chat about this idea from her Tedx talk, as well as her son’s extraordinary educational journey that involves poetry, patterns, and more! We’re also discussing fearless learning, the teach don’t test method, and the unfortunate way that people measure intelligence by appearance. You don’t want to miss this one, friends!
Read MoreWhen it comes to feeding our kids with DS, we’re all just doing the best we can right? Some days our best is a PBJ and some days it's fresh baked gluten free bread! But everyday, we want to fuel them with food that helps them be their best! That’s why we have Dr. Sarathy on this episode for a conversation all about functional nutrition. Not only does she have two masters degrees and her PHD, she’s a mother to a child with a dual diagnosis of down syndrome and autism, as well as a fellow podcast host! So friends, join us for a chat about all things nutrition, whole foods, “picky eaters,” and the small changes that make a huge difference!
Read MoreHave you ever felt like you’re preparing for battle when you’re getting ready for an IEP meeting? You’ve gathered all your resources, you’ve been to all the conferences, and you’ve asked everyone you know for advice, but you’re still worried about being met with negativity and pushback. We’ve all been there. Let’s face it, the education system wasn’t made for our kiddos, and it takes a whole lot of advocacy (+ an amazing IEP team) to make school work for them. That’s why today we’re chatting about our tips for going into those (sometimes daunting) meetings.. what to say, what not to say, when to speak up, and when to remove someone from your IEP team.
Read MoreAnyone else feeling more uncertain about the upcoming school year than ever before? We know we are! That’s why we have Dr. Spinazzi back on the show for a special episode about her insights into Covid-19 and her thoughts on sending kids to school in the middle of this pandemic. Not only is she a physician and professor, Dr. Spinazzi is the medical director of Charlie’s Clinic, a Down Syndrome specific clinic in Oakland, CA. We are so grateful for her infinite wisdom and her heart for our kiddos. Join us for a chat about classroom safety, school precautions, the risks and benefits of distance learning, + so much more. And whatever the school year looks like for you and your family, we are cheering you on.
Read MoreIn just one day, Kenny Clutch went from dancing in the hospital room for his son Kristian who had cancer, to speaking on the news and being reposted by celebrities everywhere. Not only is he “The Dancing Dad,” Kenny is also a husband, father of 4, Down Syndrome advocate, and a motivational speaker. Today he’s sharing the story behind his nickname and how his experiences have lead him to host “Shift Makers,” a special event focused on developing positive strategies to deal with life’s challenges. So friends, join us for a chat about advocacy, adversity, pain, positivity, and of course— dancing.
Read MoreKayla Craig is a mother, author, podcaster, journalist, and so much more. She and her husband lead a diverse family made up of four beautiful children -- including two adopted kiddos and one with Down Syndrome! After realizing how curious other kids were about her unique family, she put pen to paper and decided to write “Just Really Joseph,” a book to help young children understand what really makes a family. Today, Kayla is sharing about her motherhood journey, her daughter’s experience with infantile spasms, and how to have hard conversations about faith. We’re also touching on ethical and safe adoption, white savior complex, and the reasons people actually pursue international adoption.
Read MoreAs parents of children with Down Syndrome, we’ve heard of about 1 million things we should be doing to improve the brain power of our kiddos… and we’re guessing you’ve heard them too! Do we say yes or no to B-12, Tylenol, dairy? Is gluten really that bad? And what on earth do we do about vaccines?.. We’ve brought on an expert to answer all of this and more! Dr. Brian Skotko is the director of Massachusetts General Hospital’s Down Syndrome Program, a brother to a sister with DS, and the creator of Brain Train: a program for individuals with DS designed to boost brain function and prevent Alzheimer’s disease.
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