68: CP, Self-Care, & Advocacy with Marie Fraser

I have such a great episode for you today. Marie Fraser is a Self-Confidence and Re-Invention Coach and creator of “Bounce Back After Break-Up.” She came onto the podcast to talk with me about raising her son, soon to be 24, who was diagnosed at 1 with Cerebral Palsy.

We talked about the grief that comes from receiving a diagnosis, letting go of the expectations as parents, and finding happiness in the new ones. Marie is a single parent and strongly emphasizes the importance of advocacy and self-care. She suggests what she thinks are the best things we as parents can do for ourselves. This conversation offers excellent advice from the mom of an older child who has been on the battlefield and came out victorious. The journey is never over, of course. Marie still worries about what will happen to her son and wonders how she can best support him. There are so many gems of wisdom in this interview for parents, new and old. I had a lovely time talking with Marie, and I’m sure you’ll enjoy this conversation as well.

67: Live Like Sean, with TJ Nelligan

I had the absolute pleasure of interviewing father, advocate, author, and, I learned, fantastic storyteller, TJ Nelligan. He wrote the book Live Like Sean, Important Life Lessons from my Special-Needs Son.

Some of the lessons TJ mentions have really stayed with me. Being present in the moment. Being friendly to everyone. Showing genuine concern for those around you. Ways most of us know we should behave and interact with our fellow humans but sometimes get lost in the chaos of adulting in this society, especially these days. 

So when you’re done listening to this episode and you’re inspired to get the book, you can follow the links in the show notes, search the book on Amazon or Barnes and Nobles, or visit his website tjnelligan.com. There you can find sweet pictures of him and his son, and their family, and learn more about them both and what wonderful lessons you’ll encounter when reading this book. 

66: Dusting Off the Mic

So I’m dusting off my microphone, refamiliarizing myself with this podcast world, gathering a list of guests to interview and diving back into Walking with Freya. 

I think, ultimately, one of the biggest reasons I haven’t podcasted for several months, was that I wanted to have something important to say, something profound and hopeful about this pandemic and the time we are living through. I wanted to get through the election and the inauguration.

We’ve all been at home, we’ve all been worried and grieving, some terrified, some sick and full of loss, and that’s not to say there haven’t been happy moments or laughs along the way but, this is a difficult unsettling time to be living through. It does seem like hope is on the horizon for something different than all of us staying at home, but we are a far cry from the kind of ‘normal’ life we were used to. But what is normal? And how can we, or I, claim to know what that is when so often our lives get rocked to the core with the birth or adoption of a child with special needs. Normal goes out the window. 

Words of wisdom, profound reflections on this time? But now I at least have a nice long list of amazing people to come on and share their stories and knowledge on the podcast. And I’m always open to more so if you’d like to share your story send me an email at walkingwithfreya@gmail.com

65: How To Raise A Math Person, with Allison Dillard

Math Professor and author of two math strategy books, Allison Dillard, spoke with me about how to raise a math person. With over 20 years experience tutoring and teaching math, Allison had some great tips and strategies for parents whose kids struggle with math. We spoke about math anxiety, common core, motivation, learning differences, and when to get a tutor. This episode is an inspiring and positive start to the new math year! More from Allison can be found at allisonlovesmath.com. 

Ep64: Talking with Kids About Racism, How & Why

I had another enlightening conversation about race and discrimination with Special Education teacher and IEP coach, Jamilah Bashir.  I came away with the importance of talking to our kids about the racism that we see today because it affects us all. Our children will see it, hear it, witness it—they may succumb to it, they may be victims of it, they may benefit from it. Racism is a thread so tightly woven into the tapestry of this country, it is difficult to find the beginning, or separate it from the others. 

We are all in this together. Whatever political leaning, whatever social morals, we are here together trying to find our way through. And we have something in common...we love someone, or many people, with special needs. People who have traditionally, historically, and repeatedly been marginalized in society, people discarded and denied the decency of humanity.

Thankfully, our children now live much safer, fuller, happier lives because people have stood up for them, for their needs and their rights. People have demanded they be treated decently.

Now is the time to have these tough conversations. We must talk to our children, help them find the tools to fight against racism and discrimination whenever or wherever they encounter it, be the examples of inclusion before them. We must teach them how to stand up for each other.

If not now, when? If not us, who?

Ep63: Ido in Autismland

I am very excited to bring you a special episode with Ido Kedhar, a 24-year old author with non-speaking Autism. Yep! My first ever guest to use a voice app for the interview!

My questions were pre-written and then sent to Ido so he had the opportunity to type out his answers – this was at his request in an effort to save time. I then had the opportunity to speak with his mother for a bit to hear her perspective on the amazing things that Ido has done.

Oh, I mentioned he is an author yeah? Not just one book, but two! “Ido in Autismland”, a memoir he wrote as a teenager and “In Two Worlds” – a fictional novel looking at autism from the inside out. 

There are powerful messages to be learned in this episode! To lead us into this inspiring conversation with Ido Kedhar, I’ll read a quote from this interview to set the stage: 

“…one theory widely believed about my disability is that we lack creativity, imagination, insight, and empathy. I hope my book turns that nonsense on its head.”

You can learn more about Ido and his books at http://idoinautismland.com

Racism in Special Education with Jamilah Bashir

I had a conversation long overdue with Jamilah Bashir about racism in special education. I’ll be honest and say that this is not something that I have even thought about until very recently, and yes that is my privilege showing. Hopefully, the old adage of better late than never applies here as well, and I am asking you all to join me in going deeper into understanding how the systemic racism of our culture permeates even the arena of special education, not just so that we have a broader picture, but so we know how and when to speak up and how to fight against it.

Jamilah and I discuss the many factors surrounding students of color and special education, the effect of implicit bias on how teachers interact with students, the criminalization of black students while overlooking mental, emotional or special learning needs, the disparity of funding in school districts, how parents of color are viewed and treated when seeking services and the lack of effective diversity and inclusion training.

Our country is potentially on a path towards profound change, good change. It’s time for everyone to be a part of the conversation. Silence is compliance.

In Support

I hope that everyone is staying safe and staying kind.

I’ll leave you with some words I recently read in a book by Alice Walker called We Are The Ones We Have Been Waiting For: Inner Light in a Time of Darkness. In the book Alice writes,

“The world is as beautiful as it ever was. It is changing, but then it always has been. This is a good time to change, and remain beautiful, with it.”

Ep61: All That Chaos, A Talk on Resiliency

I spoke with my friend Emily Felt about resiliency and gratitude and a variety of topics we veered off onto. There are some gems in this conversation about how to be more resilient, what it looks like, how we can help our kids develop this skill, the importance of sharing our stories as moms to kids with special needs and how the simple joys in life can be everything. And with that, here is a conversation with a dear woman, friend and ally on this path of raising a daughter with PWS as we seek out the lessons and joy along the way.

60: Griffin: An Insider View of PWS

Back in Ep 48, I had a lovely conversation with Jessie, mom to 17 year-old Griffin with Prader-Willi Syndrome. Today, I get to offer you an interview with Griffin himself. 

Griffin is a great kid, living a beautiful life full of motivation and a desire to be helpful. He is an inspiring example of the hope and expanded expectations of what we can have for our children – but he has help, and he makes that clear. Part of his success is the assistance he receives in life, the support of his family and friends, the school, and the accountability that comes with this support. 

As many of you know, PWS is a spectrum disorder, which means that not all kids are capable of such things as Griffin. But the point is not to judge, not to base the success of your child on another – but hopefully, this interview offers you an insight into what all kids with PWS experience, whether they can hike for miles and speak at a conference in front of a large group of people, or whether a stroll around the block and a complete articulate sentence is their success – they all feel the hunger, they all deal with anxiety. This is the heart breaking reality of PWS.

But the beauty is, and this is what Griffin shows us, is that these can be managed. They do not have to deter your child from living their best life, however that looks for them. We can’t make these challenges go away, but with the right help, the right advocacy and understanding, we can help our children learn to live a full and beautiful life, one that they are inspired to live. 

59: PWS Awareness Month

I know most of you all are still sheltering in place and I hope you have found a rhythm to your lives that is sustainable for this moment, that you have laughter and peace throughout your day, two things that are perhaps harder to come by. 

May is PWS Awareness Month. 

 The last few years, during this month, I have dedicated the podcast episodes to Prader-Willi Awareness. This May will be the same, though it may look a bit different. As you can imagine, like most things, plans have had to shift. My live podcast was obviously cancelled. I have also been focusing on finding my balance, to get my feet firmly planted within this new, and hopefully temporary, normal. 

 I will still be dedicating this month to PWS, however, it might be a little different than past Mays - more personal, more creative. I hope this is a worthy substitute to the past. I will include interviews where I can, and share moments from past episodes. I hope that, if you are someone who is not related to the PWS world, you will still stick around and listen. These stories relate to all of us in so many ways. 

57: Quarantine Check-In

I hope you all are staying safe and healthy, social distancing, washing hands, eating healthy and being kind to one another. I know that many of you are afraid – afraid for your child who may be medically fragile and of the more vulnerable population, struggling with children who just can’t understand why they can’t see their friends or their grandparents, worried about bills and jobs and food and what now…and I would love to come on here with words of comfort and assurances that this will all be ok. But I’m not sure what ‘be ok’ means to you. 

I can tell you that we are all in this together. We are all struggling, and afraid, and unsure how to talk to our children, what they are going to remember and what life will look like when this is all passed. And we are all, most of us, making it work. There may be tears and frustration and fear, but there is also life. There is also laughter, and learning, and connecting in ways we may not have thought before, or tried. You know what is a simple act to do with your child? Tell a story. 

I wish you all health, strength and many beautiful, peaceful moments during this time. 

56: Laura Hernandez & Mama Systems

Laura Hernandez, founder of Mama Systems, has created a large family. She and her husband have 10 children – 7 biological and 3 adopted. Laura speaks about her family, part of her journey with the three adopted children with intellectual delays and she manages it all. She then talks about Mama Systems, and how she helps other mamas with organizing their homes and navigating the world of services for kids with special needs. If you find that you are someone struggling to keep everything together, managed and running smoothly, then check out this episode for some great tips on getting it all organized. 

55: Improv for Social Learning, Maja Watkins

Maja Watkins founded the non-profit Zip Zap Zop Enrichment. She is a Social/Emotional Learning Specialist, using improv to help teach social skills and communication in inclusive settings. She has recently published a book entitled “The Brain’s Playground: Using Improv Games To Teach Social and Emotional Learning”. In our conversation, she spoke about the work that she does, some of the games she uses, and shares some of the successes as well. Maja has a brother with Autism and speaks about how that inspired her and influenced her understanding of this work. This book would be a fantastic resource in any classroom or group looking for ways to encourage positive and healthy communication and to help kids of any background or ability to further their social skills. I definitely encourage you to check it out. 

Ep 54: Cynthia, Guardian of Her Brother

Cynthia grew up with an older brother, Carlos, who has Prader-Willi Syndrome. She did not learn of his actual diagnosis until their mother passed away and she became his guardian. These past few years she has really stepped into her role as caretaker, researching and learning about this disorder and how she can best help her brother. He has lost 200 lbs, attends an adult day center where he plays sports and has a friend who shares his diagnosis and is still a companion to Cynthia. As she says, “We need each other”. In this conversation, Cynthia shares with us her story. We discuss the differences in relationships between parent and child, and siblings, and the expectations and behaviors that result from that. Cynthia also shares with us some advice on how to prepare our children for the possibility of becoming guardians of their siblings. Cynthia is an inspiring woman, a delight to speak with and a beautiful example of the power of family.

Ep 53: Eleanor and Grey Genetics

I had the pleasure of interviewing Eleanor Griffith, a genetics counselor and the founder of Grey Genetics. We talked about the kind of work that she does, differences between a geneticist and a genetics counselor. We discussed the reasons people see a genetics counselors, what they get out of their time, how money and life experience can affect the why and how of seeing a genetics counselor, and more. I found it to be a very interesting conversation and I hope you all do too.

Ep 52: Gwen & Rylan

Gwen and her 12 year-old Rylan have put out a book called “If I Squeeze Your Head I’m Sorry”. Rylan has Autism and Tourettes, what he calls his “specialabilities”, and this book is a glimpse of what it’s like to be in his brain. 

There are many things I love about this interview. Rylan is the youngest guest I’ve had on the podcast and it was great to hear from him in his own words. I really enjoyed speaking with his mom, Gwen. I don’t need to give it all away because you can listen to the interview, but there is something that she says that really has stuck with me and sparked some sweet conversations on my own circles…the idea of true inclusion, the sense of belonging and “we want you” versus the inclusion of “we accommodate because we have to”. That distinction really spoke to me and I know will be fodder for many thoughts and conversations to come.

So without further ado, I’d love for you all to gather close and share in this beautiful conversation with Gwen and Rylan. 

Ep 50: Thanksgiving and a Poem

Happy Thanksgiving everyone! 

This is a short episode, I just wanted to come in here and share a poem with you all. It is a poem that will be published in the writing journal and was inspired by a quote written by Etty Hillesum. For those of you who don’t know, Etty was a young woman whose letters and diary entries have been published for the benefit of the rest of us. These writings describe her inspiring religious awakening, along with the growing persecutions of the Jews in Amsterdam.

The story of the first Thanksgiving is of the pilgrims and those who traveled with them, fleeing persecution, looking for freedom and a better life.  They were all strangers to this land and were grateful to have survived that first year. They could not have done so without the help and generosity of the Native People who had been living on this land for countless generations. 

On this Thanksgiving Day, may we remember the generosity of those who have come before, and heed the lessons of a painful past. May we, as a nation, dive deep into our humanity. In 1943, Etty Hillesum was sent to Auschwitz and killed in a concentration camp. Today, may all children be released from their cages.

I wish you all a wonderful and warm Thanksgiving, full of love, family, friends and peace.

Now for the poem.