The Adapted Life, Finding Next

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In this episode I discuss how my journey to finding meditation has been pivotal in helping me to manage the storms and difficulties that being a caregiver has presented. 

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In this episode, I share with listeners an inside look at just how complicated it is for me to bring my disabled son on vacation, or traveling anywhere for that matter. 

May I first add, that as Daniel has aged and become a young adult, he is heavier and requires more assistance with mobility and transferring and caregiving in general. If we are blessed to be able to take Daniel on a vacation, the planning, traveling and staying  is pretty much at a ridiculous level of being prepared. 

In this episode I share the challenge we face with traveling with our son who is severely disabled. 

We have never taken a vacation without Daniel, and work really hard to include him.  

There is no easy way to travel with a severely disabled person.

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In this episode, I discuss the challenges caregivers like myself face, with trying to get the care needed for their loved one.  In my case, my son is medically fragile and requires nursing care every day.  

He has state insurance that is approved for 112 hours a week, but he has never fully had those hours staff.  Or the therapies staff that he also needs. 

I discuss the topic of how we had to wait and finally be approved for CT Medicaid.  And how once nursing care was approved, we were faced with...

1. Nursing agencies not being able to find nurses 

2. State reimbursement wages are very low for nurses who do in home medical care, and this leaves people like my son, and myself vulnerable to not being able to have help. 

3. The inherent struggle for a parent like myself, who needs to work and provide for the rest of her family, while also managing the care of her disabled loved one.  It is an ENORMOUS challenge. 

4. How I feel invisible to the rest of the world when I am told at the spur of the moment, sorry, no help for you today, and have to cancel everything that I had needed to do.  This happens more often than not. 

5. and how it is vital to maintaining a caregivers mental health, to try to stay positive, and not fall into self destructive patterns and depression.   It can feel extremely frustrating to realize that you can't go to work, or on a date, or even take a shower some days because the help you rely on, just doesn't exist that day. 

I want you to know, that I see you.   I understand.  I think this situation needs to be addressed and that people like myself should be able to engage in careers and building businesses, instead of having to give it all up because there is no help available.   And this is help, that is promised to my son through his approved benefits and the hours the doctors have certified that he should have in the home care.  

Adapting is building resilience, if we adapt positively with the right mindset for finding solutions and being receptive to abundance so that we can receive the help we are so loudly asking for. 

I hope to connect with you.  You can find me on instagram, Facebook, you tube, ETSY (Daniel's Special Art) Tik Tok .

LET'S CONNECT. 

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April 29, 2022

CRISIS! NO FORMULA FOR MY GTUBE FED SON!

In this episode, I wanted to share with you my experience with the recent recall of specialized formula that we needed to feed our 24 year old disabled son.  The recall, of Elecare Jr. and the subsequent supply chain crisis of baby formula and enteral g tube formula for adults and children, was extremely stressful.

We went through having to watch Daniel experience a dangerous allergic reaction to a substitute food that the doctor thought would be safe.  I spent days calling, everywhere, to find any supply of any amino acid based formulas even similar to what Daniel had been using for many years.

Eventually we had to switch to a different type of formulation all together, a vegan whole food made nutrition with peptides, created for g tube feeding.  That is called Kate Farms, and for now he appears to be tolerating it fairly well.  We are watching every symptom so carefully.

When the solution to feeding a fragile person suddenly disappeared over night, I was left scrambling to find a solution.  And there was nothing similar to the original formula available anywhere. 

He isn't a person who you can just, try this, try that...  because of extreme sensitivity. 

Adapting.   When the solution to the solution is not longer a solution, because both solutions are rendered not available.   

it is my world, caring for my son.  I am his LIFE giver, not just his CARE giver.  I take this responsibility very seriously, with deep awe and gratitude because of the love I have for my beautiful son.

I am one of a beautiful collective of people like me, who for many reasons, are faced with adversity and challenge in caring for another person.  In LIFE giving, and all that comes with it.

This is my adapted life story.  It changes every second.  I have learned to surf the waves of hypervigilence.  And with deepest empathy and compassion, I want to reach out across the universe to all who need someone who gets it.  I get it.  I am here, in Connecticut, caring for my son facing joy and challenge each day, writing and podcasting about it, creating video content for others to watch and share about this adapted life, and finding ways to grow in purpose and passion.

DEVELOPING PURPOSE FROM RESILIENCE IN ADAPTING.

Thank you for listening.  

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In this episode, I share with listeners some of the responses I have heard from other caregivers/special needs parents that are the biggest challenges they face caring for their loved one or child.

As much as this life feels isolating and lonely, there is some comfort in knowing that there is a connective to the issues that trouble our hearts. 

In my quest for answering the question, "How can I (as just me) help and encourage others who are struggling through this difficult daily adapting to ever constant difficulties.?"

I think simply by stating what I have done, throughout 24 years of caring for my severely disabled son, is in itself helpful.

I am still working on developing my purpose and vision for expanding this community, but I want to encourage you to find even one little spark, one thing that brings you joy, and find a small piece of time to do it.  In a previous episode I wrote about the cracks that I slip into, and I believe we all may these moments if we are open to them. 

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The Adapted life is a place where anyone who has experienced extreme adversity, can find community and encouragement to hang onto you.   Hope. Laughter. Sharing. and Love.

Caregivers, or simply anyone.  A Birdseye view into the home of a caregiver Mom (me) who has been adapting and surviving, and caring for a very special young man named Daniel.

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In this episode, I talk about something that I've written about considerably.  As a caregiver, I have so much of me devoted to this role.  But the true essence of who I am, what my souls true purpose is, is far greater than just my role as a caregiver, or even a mother. 

I've been cultivating time, however briefly, where I can slip away into the cracks and work on self care, or my own creative endeavors.   I find time to engage in transformational meditation courses or to upload a new episode here.

Sometimes I just slip away and try to find ways to not only bring purpose and joy to others, but also to provide a source of income for my family. (since I am unable to hold a full time job outside of the house given the intense and stressful situation with taking care of my disabled 24 year old son)

Please come along, as this veteran special needs Mom (I am 56 years old) talks about the look back at how I got to where I am today.   

This journey to create the Adapted Life, has been so incredibly amazing.  And also, very very difficult.  I gave up my career, my aspirations, and for a long time, I buried my identity.  As I say, I put it in a bin, in the basement, behind the Christmas decorations. 

I created the Adapted Life Podcast, as a Community for everyone, but especially for those of us who are devoting our lives to being caregivers.  For those of us who have faced unforeseen extreme adversity that has changed the life we once envisioned for ourselves.

Welcome to my adapted life.  I'm so glad you are here. 

For more from Julie Hasselberger, tune into her YouTube channel at Julie Hasselberger
, or instagram  @jhasselberger
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episode 10. 

The Adapted Life Podcast

Life in my shoes. Recovering from grief.  Why my podcast matters.

My world was crushed on January 23, 2022 when my mother passed away suddenly.  It has taken me a month, but I am finally able to talk about it.  I share with listeners why creating and building this podcast is so important. 

Being a caregiver is hard.  But it is also full of wonderful blessings and joy.  I am here to help and encourage others. 

I want to express to anyone who is listening, that in this creation of Julie the caregiver, I have learned so many things about myself.  I heard a quote today that said, “it is truly in helping others that we discover who we really are as people” .   

That is the essence of why I am podcasting.  I am truly still discovering all of the ways that this will bloom.  As I open up my heart to abundance and receiving, things are just flowing to me.   When I get side tracked, as I have since something tragic happened in January, its as if a force inside my heart pulls me back here to this space where the ideas begin to flow again.

The adapted life is a place of growth.  A place for kindness.  A place for comfort.  A place to feel supported.  A shoulder to cry on.  An encouragement during a rotten time.  A place to help eachother.  A place to grow. A place to create. A place for anyone who wants to understand the REAL meaning of “caregiver”.  The adapted life podcast, is, in itself, a caregiver.   This is why I am here.  As I continue to manage the complex life of my medically fragile son, I am deepening my soul and finding new things about myself every day.  Like how to come back from being so profoundly sad, and find purpose in that sadness.  

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In this episode, I discuss what my life entails as a 55 year old caregiver/Mom for my severely disabled son.   It has evolved into caregiving with resilience, but the journey has not been easy. Please join me, in my adapted life, as I share how I've made it this far, and expand into ways that we can connect in the future.   For this episode, I hope to begin to illustrate in your mind, what happens when your child is too disabled to ever live independently.  How to cope and deal with the challenges, and how to develop yourself in the process.

I am thrilled to be podcasting, because I have visualized this for years.   

You can learn more about us on my YouTube channel, https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

I am hoping to find sponsorship opportunities 

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The Adapted Life Podcast 

Season 1 

Episode 7

I did some reflection in this episode, of 4 stories over 24 years, where the kindness and generosity of others, helped us with our needs for our disabled son.  

I would like to share some memories with you all, because as you can imagine, after 24 years of being Daniel’s Mom, I have an incredible library in my brain of the best and worst, experiences.  

As I have been learning so much in my meditation practice about abundance and the law of attraction, I realize how vital it has been for me to hang onto my positive and open attitude.  Gratitude has always been a priority for me.   I do not feel guilty about gifts that come from the goodness of others, because I am grateful, and joyful.  

Today is December 3, 2021.  Daniel is downstairs with his nurse, my husband is working from home, I am sitting here in my home office created by me, out of a vision of me podcasting, about  adapted life.   And I am literally stepping into what I manifested.  

Daniel still has major medical issues that I am managing.  We are still juggling financially. Our needs for our son, are even greater than when he was a child, the lack of freedom and being 100% on call and a caregiver for my son can feel very heavy, but my mindset is shifting.   

When I look back, over the last 24 years, I see a bumpy twisty turning road of hardship, fear, pain, sadness, lack, depression, exhaustion, isolation, confusion, inconsistency…  which also was laden with laughter, kindness, appreciation, amazement, love, hugs, patience, and generosity.    How does someone survive such a turbulent world of uncertainty?  Somehow, I am here to tell you, that you can.  It is possible.  I am figuring it out.  I am trying to share my research, so to speak, because in the vast imperfection of my life as a special needs Mom, I have found the light that I need to adapt and change course when I need to. 

That is how I found myself on YouTube.  That is how I discovered that I wanted a podcast about how “effing” hard it is for all of you special needs parents out there.  I get it.  I am it.  I changed the diapers of 24 year old this morning and checked his vital signs before taking a sip of coffee.   I sleep with my ring camera alerts on full volume.  Just in case.  And I have found myself discovering that through all of these years, I am yet to fully discover my true purpose.  I think I am very close.  And it feels amazing. 

I want to connect with you.  I want you to know, that you are not alone.  All of you Moms, and Dads and caregivers, feeling like you are stuck in your house, not knowing how the heck you are going to get all the things done for your loved one, not sleeping, having medical issues yourself because of depression and anxiety, and the really hard mental acceptance that your in this for the long haul.   I am here too.  We are adapting together.  

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Episode 6 Becoming A warrior

In this episode I share my experience as a special needs Mom who pushed herself into become a warrior for the things that her severely disabled son needed.

From education to health care benefits and nursing, nothing has come without a significant amount advocacy and fighting.

There is very little help out there for new parents trying to figure out which direction to turn when accessing special help, special services, special education etc for their disabled and medically fragile child. 

For me, I learned the hard way that centralized and organized care, research and managing was not done for you.  I had to step out of my career aspirations, and into my sons care and management of his care, because it is more than a full time job.  And it is not easy to navigate the complicated world of special needs care and all that comes with it.

I was a Mom of three children, struggling to figure out how to give my family all of me, when basically 90% of me was invested into my son Daniel.   

My early years with my kids, were a whirlwind of trying to leave my career dreams behind, while also trying to make sure they all were safe and happy. 

Today, my son Daniel is 23 years old, turning 24 on November 22, 2021.  And my daughter just found out she passed the California Bar exam, My youngest Son is extremely gifted and studying music and performance at Berklee College of Music,  I have been married to my husband and best friend for 29 years, and Daniel is here with me.  I am still his advocate, managing his complexities and things are still very difficult. 

I have adapted, and recreated myself over and over.  And through podcasting, video editing, and writing, I am stepping into a new adventure of a different kind of vulnerability.

Please enjoy the episode.   And come back for episode 7, where I will start a series of short stories based on some of the most incredibly wonderful moments, and the most traumatic moments of my adapted life.

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