Ep39 - Food Gratitude

Gratitude – how can having gratitude affect our brains? How can we practice the art of gratitude and bring it into our every day to increase the quality of our lives? How can food gratitude affect us families living with PWS?

I had the wonderful pleasure of speaking with Emily Felt. I first met her over the ethers on this very podcast last year when she came on to talk about her experience as a mother to a daughter with PWS. We also touched on a project she was beginning to get out into the world.  I have since met Emily and her family, shared a meal (and a glass of wine or two) and am grateful to know her now as a friend. Emily has since finished her project, presented at various gatherings and spoke about it with me. This conversation today is about Emily’s work,  “Food Gratitude; A Crash Course in Positive Psychology for Families of Children with PWS”. 

We talked about habits, practices and rituals, the neurology of gratitude, the how and why to build resilience and how reframing negative thoughts is a resiliency skill. We also, of course, talked about all of this in relation to our own lives and experiences and hopes and fears for the future.

I always enjoy talking with Emily – I hope you enjoy this discussion on the very practical ways to bringing more gratitude into your life, especially as a parent of someone with PWS or other special needs.

Thank you to everyone who is here – raising children with special needs or not – it takes a village and I, for one, am grateful for you all!

Ep38-Jessica, PWS and We Are Brave Together

What does it look like to be an advocate for the friendship of women, connection and community? To not only offer resources like workshops, relevant speakers, online groups and mentoring, but also specialized and affordable retreats for mothers of children with special needs?

Jessica Patay, mother to 16 year-old Ryan with PWS, spoke with me about her non-profit organization “We Are Brave Together”. I thought her story would be a beautiful one to start us off for PWS Awareness Month because of her wisdom, her experience, and the beautiful work she is doing in the world.

Before we got into talking about We Are Brave Together she shared some of her own personal story of raising a child with special needs. How she got plugged into PWCF right away with a mentor and support groups. We talk about anxiety – the biggest challenge of PWS in their life – and the ways they are coping with how it manifests.

And then we talk about siblings. Jessica spoke about the importance of validating their feelings, being intentional, and how to make special time for them so they are sure to understand that they still matter.

Welcome to the first of 5 episodes dedicated to PWS Awareness Month!

Ep 37 - NVC and Consious Parenting

I had a fantastic conversation with Diana Mizer, a local woman who started her work in midwifery studies and doula care, and found she was called to be more expansive. She created and teaches a curriculum for conscious parenting and from there has also begun a wholistic coaching practice. 

In our conversation we spoke about non-violent communication at its foundation – the intention to connect! We also spoke about the importance of recognizing our needs, our own personal responsibility towards meeting those needs, and understanding that people can get needs met without others losing something. She brings the lessons of conscious parenting into the conversation as NVC sometimes falls a bit short with children.

Diana also stressed the importance of self-care, as she puts it “being well-resourced”. Bad communication and unhealthy interactions often occur when we do not have basic needs met. In these moments we should HALT and ask ourselves if we are Hungry, Angry, Lonely, or Tired. We talked about what self-care looks like, while acknowledging that parents of children with special needs have a much harder time carving out that space. Hopefully we offer some helpful suggestions.

This episode is meant to be an introduction to what I think are valuable resources for our day-to-day experiences. I bring in a few of my own personal experiences for exploration which many in the world of special needs will understand, but this conversation is really for anyone.

DianaMizer.wordpress.com

Ep36-Haven, Freya's Big Sister

I sat down with my 14 year-old daughter, Haven, to talk about her experience as Freya’s older sister! We shared quite a few laughs and I certainly learned some things – like how a person can totally internalize an experience, over think it and process it and chide themselves for their actions, when the other person involved may not remember any of it.

We talk about her memories from the beginning, the most challenging aspects of the syndrome, if has ever felt embarrassed, and why she feels protective and how that manifests.

I asked Haven to end our conversation with some words of insight, wisdom or advice for siblings of children with special needs. This was a delightful conversation with my daughter, with some surprising responses. I hope this talk inspires and encourages other parents to have these discussions with their children, if they aren’t already. I was enlightened. 

Ep34 - Ashley; Birth and Down Syndrome

A few months ago I sat down with a local woman and new mother, Ashley. Her daughter Willow, at the time of our talk, was 11 months old, diagnosed with Down Syndrome. I will admit that there was a part of me questioning whether I should do this interview. Ashley had reached out to me about telling her birth story. I was very excited and said of course I would love to hear it. But as the time got closer and I had some more interviews under my belt, I began to question my ability to properly hold space for someone not even a year in to their journey. I remember how raw and intense that first year was for me, how sensitive and exposed I felt and just wanted to be a safe space for her to talk about this time. 

 

Then Ashley came to my house and she began to talk…I listened, and I sat there in awe of her strength, her openness and her ability to speak with such clarity about her experience…the unexpected cesarean, the ridiculously ignorant and unhelpful comments from medical professionals and her continued push for others to acknowledge that her baby was not a ‘Down Syndrome baby’, but a beautiful, strong being whose name is Willow.

Ep33-Andrea Klunder and 'Power Your Story'

Andrea Klunder works at Ray Graham Training Center in Chicago, a high school for diverse learners and students with special challenges and needs. There she runs a podcast mentoring program called Power Your Story. She helps the students create and produce their very own podcast. It is a space where students who may not always be heard have a voice.  Andrea explained to me how the program works, her student’s level of involvement, how she sees some of her students momentarily overcoming some speech challenges, the affirmation they feel when seeing the analytics of how many people are listening, and how you can learn more about possibly starting programs like this in your child’s school.  The podcast is called “Power Your Story”, found on all of your podcast apps. The students would love if you checked it out and gave it a listen, and I think you would too.

Ep31-Sonia Story; Move, Play Thrive

Neurodevelopmental movements, as Sonia explains them, are movements innate to human beings and help us develop. Without these movements, and the integration of our reflexes, our brain, body and sensory systems are not able to mature. 

When you learn more about it, and begin to understand it even deeper, then you start to see how these could help the people around you; not just the children diagnosed with developmental delays, but the “typically developing” children who can’t sit still in class etc., or the adults who struggle with anxiety, with depression, sleep issues and so much more – I mean, the list of who can be helped by this therapy is llloooonngg.

 Think brain maturity, integrated reflexes, connections, pathways, sensory integration, trauma healing, feeling grounded in your body, emotional security…as Sonia says, “these movements are life changing”.

Ep30(p2)-Chantele, Rett Syndrome

What if your 17 month old typically developing daughter almost over night lost the use of her hands, the ability to speak, or even hold eye contact…How would you move forward? If you’re a parent of a child with special needs, you know the answer. 

 You just do.

 You put one foot in front of the other, you get all the services you can, you research until your eyes cross, you send a letter to the doctor who told you never to expect anything, you fight fiercely for your daughter and help her live a beautiful, wonderful life surrounded by strong, capable and loving people.

 Chantele, a thoughtful, wise and inspiring mother, spoke with me about her 21 year-old daughter Havana, diagnosed with Rett Syndrome. We talk genetics, coping, seizures, survival, inclusion – we shed some tears, we chuckle, we witness the heart break and celebrate the victories!

The second part of a beautiful talk about raising a daughter with Rest Syndrome.

Ep30(p1)-Chantele, Rett Syndrome

What if your 17 month old typically developing daughter almost over night lost the use of her hands, the ability to speak, or even hold eye contact…How would you move forward? If you’re a parent of a child with special needs, you know the answer. 

 You just do.

 You put one foot in front of the other, you get all the services you can, you research until your eyes cross, you send a letter to the doctor who told you never to expect anything, you fight fiercely for your daughter and help her live a beautiful, wonderful life surrounded by strong, capable and loving people.

 Chantele, a thoughtful, wise and inspiring mother, spoke with me about her 21 year-old daughter Havana, diagnosed with Rett Syndrome. We talk genetics, coping, seizures, survival, inclusion – we shed some tears, we chuckle, we witness the heart break and celebrate the victories!

This is part one of a beautiful talk about raising a daughter with Rest Syndrome.

Ep29-Monica Draudt on Working from Home

I spoke with Monica Draudt, a mother who has created a successful business from home, along with her own podcast called ‘Work N’ Home Mom Podcast’. Her connection to the community of special needs comes from having an older sister with Cerebral Palsy. Monica talks a bit about her sister and the experience of being raised in a family where daily therapies, wheelchairs and walkers are normal. 

She then discusses the ways she has generated an income while working from home, and what led to the creation of her business. She offers suggestions and resources for finding work from home, along with practical advice for how to start out on your own. If 2019 is your year to shift or create an income while having the availability and flexibility that most of our children need, then this is a great episode to check out. 

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podcast: www.worknhomemom.com

Ep28-Holiday Bonus, A Talk for Future Educators and Therapists

In this episode I share some of our holiday mishaps with Freya and put out a call for your stories, ones I hope to read on the podcast. Then I share with the podcast audience a talk I recorded at the local university. I was asked to speak to a language and communications class. Many of the students are childhood development majors intending to work in the field of special education. I speak a bit about the characteristics of Prader-Willi Syndrome, Freya’s own development and then we spend a bit of time on the perspective of the parents and what it is that makes a good therapist.

I would love to share holiday stories on the podcast so please email yours to walkingwithfreya@gmail.com... names can be withheld.

Ep27 - Laurie, A Fellow PWS Mom

Laurie, with various degrees in education and special education, came into the Prader-Willi Community with the birth of her daughter, Aubrey, who is now 9. She tells the story of why receiving the news of a Prader-Willi diagnosis was a blessing.

She also walks us through the beginning time with Aubrey, finding out that she herself was pregnant again, taking care of a sick mother and then her own diagnosis of breast cancer. We discuss Aubrey’s scoliosis and what led to their decision of surgery and the ways to approach the education team working with your child. There is an admirable strength woven throughout this conversation; the strength of Laurie’s faith, her family, her relationship with her husband, and the positivity with which I imagine she approaches most things in life. I hope you enjoy this one as much as I did.

Ep 26 - Kate, on Raising a Child with Down Syndrome

Years ago, when I was finally able to feel a bit grounded in the world of special needs, I regularly took my two little ones to one of the local playgroups.  There I met a woman, fairly new to the special needs journey, who had then introduced herself to me as Kate. In her arms was a beautiful boy named Osha. Osha was born with Down Syndrome.  I remember that I would look forward to seeing her and Osha, I knew that sitting and talking with her about this new path, with both of our metaphorical legs trembling as we stepped one foot in front of the other, was a much more pleasant and nourishing way to spend the time, rather than following Freya around from one zone to the next as I watched children younger and smaller than her zoom past with abilities that at the time I could only pray for Freya. Years later, as Kate and I have gotten steadier feet beneath us, we sat down for this talk.

 

Kate speaks on the very crucial art of advocacy. The importance of research, documentation, reaching out to other parents, and standing up for what you as the parent know your child needs.  We talk about the wrong things to say and how to properly refer to someone with a diagnosis. Kate discusses how they support Osha’s biochemistry through supplementation and we speculate as to why there is a controversy around supplementation. And then she tells us about Osha, who he is as a person, his depth of spirit, and his love for singing and performance.

Ep 25 - Carrie, Autism and YaYa Podcasting

Carrie Caulfield Arick is the creator of YaYa Podcasting.  This company was created partly for her love of podcasting, but also out of necessity. Carrie and her husband have a 17 year-old son on the autism spectrum.  During his time at a public school, and the year and a half long transition to publicly funded private placement, what they refer to as ‘the dark time’, Carrie realized the need to be able to make money, but also be available for her son in a variety of capacities. Thus YaYa podcasting was born – not just as a momentary fix, but also as something her son could potentially take on.

In this episode we talk about the transition of a child on the autism spectrum into adulthood, what that looks like for them, for him and how they are preparing for it. Carrie also speaks about advocating for your child, how being at the crisis level can really push you to find the strength in yourself required to face the challenge.

She closes with some sound advice and resources for parents who are looking to create a business from home, with little to start with.

This episode is honest about the challenges we face at times with our children, but also about finding the strength, the knowledge, and the motivation to navigate ourselves into a clearer and perhaps more comfortable future – if there is such a thing. 

Ep 24 - Jamilah Bashir, Educator & IEP Coach

Jamilah Bashir, an educator and IEP coach from Philadelphia, speaks about her book, Because of H.E.R., inspired by the experience of growing up with a sister with an intellectual disability. We also discuss IEPs, advice for parents, education styles, and how funding affects the services provided in a community - leading to a discussion on the importance of voting and contacting your representatives. Jamilah offers great advice, knowledge and refreshing honesty.

Ep 23 - For Freya

Tomorrow Freya is turning 7. What a journey we have been on! As I have been thinking on and having conversations about what we put out into the world about our children, without their consent really, I have chosen this episode to speak to Freya. The grown up Freya, the Freya who may one day listen to these episodes and wonder why I would be so open with our lives. This is an episode of intention, explanation and the deep love and appreciation I have for Freya and our life together.

Ep 22 - Jackie, An Educator on Dyslexia

Mrs. Jackie Marie Beyer is an educator and fellow podcaster who hosts the Authentic Teacher Podcast. She came on to talk mostly about dyslexia – the signs that a child is struggling with reading, how to help them through these struggles, and the importance of focusing on their strengths.  Whether or not you have a child with dyslexia, Jackie offers some great advise, practices and resources for any child learning to read.  She calls on her experience as an educator and the information she gathered at a training she participated in this past summer.  If you have a young reader in your life, this episode will certainly be beneficial to you.r