Ep 47 - Inclusive Education Project

Have you ever questioned your knowledge of how to navigate special education? Have you left an IEP meeting feeling confused, angry, or sad? Have you been in a situation where you knew that if you were better informed, you could be a better advocate for your child?

Well, first off, you are not alone. At some point along this journey, we all feel lost, confused, overwhelmed, unequipped, and sometimes like failures. Well, you are not that either. And for the rest of it, we are fortunate to have amazing advocates to help us along. I am incredibly grateful to have spoken with two of them.

The Inclusive Education Project, created by Amanda Selogie and Vickie Brett, is “a team of civil rights attorneys on a mission to educate and empower our community to ensure all children are given equal opportunities” based out of Southern California. Good news for all of us though, they also host a podcast called the Inclusive Education Project Podcast, where you can find information on so many aspects of this journey.

They spoke with me about how they got starting into law, and special education and disability rights and the work that they do. We talked about what inclusion looks like and some possible barriers to implementation. Then I got to pick their brain a bit with some questions a few friends and I had as well. We also talked a bit about names and labels and even the appropriateness of this podcast’s name.

I was so grateful to Amanda and Vickie for taking time out of what is I’m sure an incredibly busy schedule to speak with me. They are wonderful, and I really hope that you check out their own podcast and website. They do amazing work!

Ep 46 - Tera and Pura Syndrome

I first met Tera about a year ago. We occasionally meet for lunch and talk about our lives as moms to kids with special needs - the struggles, the logistics, the grief, the positive intentions for now and the future. I have said it before...there is healing in telling our stories. I was so happy to get a text recently from Tera saying, “I’m ready to record my story,” and also honored that she was willing to share the story with this podcast. 

Tera’s son, Rowan, has Pura Syndrome. He was born at home, but it was only hours later that he was under the fluorescent lights of a hospital exam table beginning his medical journey. Tera spoke about her trauma and depression, and how, with the help of ABM therapy  (not only for the therapeutic benefits her son received but also for introducing her to a new and supportive community) she was able to find her way in the world again. She talks about what is important to her family and how they have found the road to happiness and acceptance.

I am grateful to Tera, and all the guests who come on this podcast, for their courage, their insight, and their honesty.

Ep 45 - Denial

Ok, so sometimes I fail, and probably a little more than sometimes. But this past weekend, while camping with my youngest daughter’s first-grade class, I was smacked in the face a few times, once literally, with the level of denial I have apparently been in. And maybe it’s not so much denial of where Freya is with the way her syndrome manifests, but more in denial of how much support I need to provide her in these kinds of settings.

I wanted to be a typical parent this weekend; to relax and be social and get to know the other parents without stress or explanations or disruptions or any kind of sympathetic aw’s and oh’s. I tried to make it so, and failed Freya in the process.

We don’t solve our problems by denying them, we don’t learn to handle our situations by muting our minds, and we don’t get to be the typical family at the camp-out simply because we want it to be so.

Ep 44 - Playdates

I am back after a much-needed break. Now that school has started again I am questioning the how's and why's of playdates - how to ensure my daughter's safety without deterring parents or children from asking for playdates.

How do you approach playdates and help support your child in having positive and healthy interactions with their peers?

Ep42-PWS Behavior Management with Lisa Graziano

I recently attended a conference on PWS Behavior Management, put on by the Prader-Willi California Foundation and facilitated by Lisa Graziano. Lisa was gracious enough to make her first podcast appearance on Walking with Freya – in this last PWS Awareness Month episode – to share some of the tools and understandings on PWS behavior with us.

We talk about anxiety and oppositional thinking, two things very prevalent with PWS, what fairness actually looks like and the issues that come up between siblings, how perseveration and repeated questions are often linked to anxiety but can also be a sign of 'non-verbal learning disorder', how structure and routine, especially in the early years, can produce kids that are better able to be flexible in life and how this is the first step to reducing anxiety.

Lisa walks us through the build-up to a temper tantrum – how to implement Empathy in the moment to let the individual with PWS know that we understand their feelings and to hopefully get them thinking. And then we talk about the sometimes inevitable meltdown, when Empathy and other strategies have not been successful and our kids have a complete loss of ability to control behavior – an unfortunate symptom of the syndrome.

I hope you find this episode insightful and helpful.

Ep 41 - Ali, PWS

Ali is mother to Dean, a 10 year-old boy with PWS. She talks about his time in the NICU and what it was like to have a baby in the hospital and a toddler at home. The usual PWS suspects are here in this conversation – Gtube, surgeries, speech issues, anxiety, OC tendencies, and of course the topic of food. We also talk about the very real cycle of a special needs parent – breaking down, processing and then moving on – and the seasons we experience in our lives, the times where we dive into the resources and information, ready to tackle the next obstacle ahead, but also the times we must retreat into ourselves and our families, and the inevitable insecurity and question that rears itself at these times, “Should I be doing more?”

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. 

www.m-lynn.com

www.facebook.com/mlynnassistin

www.instagram.com/mlynnassistin

www.pinterest.com/mlynnassistin

podcast: www.worknhomemom.com