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

Ep 21 - Intro to Caregiver Burnout

A lament on the issues of whether or not parents can get or keep a job, shifts to the realities of caregiver burnout. There will be future episodes on both topics of financial strain and caregiver burnout. For now this one offers simple ideas for self-care and a writing prompt for those who are interested.

Ep 20 - Amanda, An Autism Journey

I had the wonderful pleasure of speaking with Amanda, a woman whose words and perspective are inspirational, and full of grace and love.   She brought me to tears a number of times during this conversation, speaking on the heartache but also the path to acceptance – so get some tissues. Not only is Amanda raising a son with autism, but she has spent many years in the world of special needs through her studies and trainings and jobs she has had in the past. She came with not only a deep understanding, but also such a beautiful perspective on her son and the journey they are on.

Ep 19 - Acceptance

I introduce a past blog post about a moment from Freya's younger years...a moment of realization that I could let go of certain stressful expectations for the loving acceptance of what is.  Towards the end I offer tips on how to begin journal writing for processing and healing and then provide an introductory writing prompt.

Ep 18 - Responsibilities

We all feel it at some time or another, like we are failing along this journey.  But we should remember that we are also growing and learning and offering our children what we can.  Sometimes the responsibilities of raising a child with special needs can seem overwhelming, and that's ok.  Hopefully, we can all find solace and support in sharing our journey with others.

Ep 17 - Angela, SLP

In this world where interactions between your child and other people can be questionable and stressful, it is such a blessing to have therapists and teachers like Angela, someone who genuinely loves and cares for the kids and adults that she works with. I have learned so much about not only my daughter’s speech, but also about navigating the world of special needs and being an influential advocate for my daughter.  I hope that you all enjoy this conversation and find wisdom, knowledge and inspiration in her story.

Don’t forget to subscribe to the podcast, rate and review and share with your friends.  And stay til the end to hear some beautiful poetry written by Angela, a beautiful soul. 

Ep 16 - Behavior (part 1 of many)

I am coming to realize a deep part of my work for this time – to better understand Freya, how her brain functions and perceives things, so that I can ease any anxiety, promote positive behavior and help her navigate situations with other children so she can play and interact with them in positive ways. This episode is the first of many explorations on the topic of brain function and behavior.  I hope it will be beneficial to other parents and children, not only PWS families. 

Ep 15 - Natalie Roberts Mazzeo

You are in the doctor’s office holding your 5-month-old baby, listening to a small string of diagnosis that you have never heard of but somehow relate to your daughter never walking, or talking, or having the fine motor skills for sign language.  

Would you break?

I spoke with, Natalie, a very lovely, strong, and inspiring mother who lived this moment, and willingly shares how she put the pieces back together.  She not only tends to her own Radical Acceptance of life in the world of special needs, but helps other parents find acceptance and hope and self-care while on their journey. This interview is about her story, and her daughter Chiara.  It is full of beautiful, graceful, poetic moments that really drew me in.  Along with this she talks about her ReIgnite Program and The Miracle Project

Find out more at miraclemama.com.au

Ep 14 - Caitlyn, Neo-Natal Diabetes

In this episode Caitlyn shares her story, from the traumatic introduction to neo-natal diabetes, to the challenges, frustrations and heart ache of intellectual and developmental delays.  We talk about siblings, unknown futures and how she herself finds comfort in this situation.  And at the end, Caitlyn even drops some important information for anyone out there who may have been diagnosed with diabetes before the age of 6 months.

Ep 13 - The Grandmas

Since this is the last episode of the month, I thought I would end it with the Grandmas….Freya’s Grandmas. Not only have they known Freya since she was born, but they also both have other experiences with children with special needs.  I will admit there is a little bit of doting in this episode, which I think is to be expected from grandparents.  But they also speak openly about their other experiences, and offer their advice to grandparents of children with special needs.  

Ep 12 - Courtney, a sibling

I had the pleasure of speaking with Courtney, an older sister to Max – an adult with PWS. As an adult Courtney has moved into the role of counselor, dealing with trauma and eating disorders.  In out time together she spoke about growing up with a brother with special needs – how it was just a part of their life, learning to adapt, the moment she became his champion, their relationship as adults and how he has been an inspiration to her in her life.  

Ep 11 - Emily, PWS Mom

I spoke with Emily Felt, a mother to 6 year-old Olivia with PWS.  She talks about how Olivia’s birth and diagnosis affected her, the grief that came from it, and how one session with a therapist helped shift her outlook dramatically.  We discuss the frustrations we have with doctor’s feeling like they need to harp on the negative aspects, what needs to be fixed or treated, without the balance of positives – what is working, what is going well. Emily is also in the process of creating something that I personally am very excited about: Food Gratitude: A Positive Psychology Inspired Toolkit for Families of Kids with PWS.  This is to help families with PWS kids to create positive, anxiety-free experiences with food, how to find create a healthier relationship with food and meal time, and a more…but I’ll let Emily tell you more about it.