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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.

Watch us on YouTube, at

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In this episode I share how finding support groups in my community and on line was so vital during the early years of our family growth.  I researched and found many organizations that provided support in the form of fellowship, and getting together, as well as support financially. 

It was such an incredible help when my kids were small, because they learned that they were not alone in this world of being siblings of a severely disabled brother.  The lessons in inclusivity were many. 

Special needs parents have so many questions.  There is power in large numbers in terms of sharing resources and ideas.  There is no "manual" or "website" you can go to find all of the ways you can find support, financially or otherwise.  So the value of support groups is without a doubt how I learned much of what I learned in order to get things for my son.

I hope everyone will continue to tune in, and as I grow in this podcast, I will continue to share encouragement and stories.  I am here, because I believe that my soul's purpose is linked to my skills as a special needs Mom and more so my skills at adapting and helping others in the process. 

Some of the organizations by name, that have been incredibly helpful for us are by name:

The Win Win foundation (no longer exists)
The Scotty Fund (Bethel CT)
The Molly Ann Tango Foundation
The F.U.N. Group (families united in Newtown)
Make a wish
Dream Come True Western Connecticut
Walnut Hill Community Church
The CT Department of Disability Services

just to name a few.

I am the Mom of a severely disabled and medically fragile son,  I am his caregiver, and his Window to the world.  He lights up my heart with his gentle smile and I am on a new adventure now, sharing our journey with others.  So many things are possible.   

Severe adversity may crumble your world, but in rebuilding, everything is full of new possibility. 

Julie's You Tube Channel
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Julie's Instagram page 
jhasselberger 

Music by Epidemic Sound 

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The Adapted Life 

Season 1, Episode 4 

Discussed what happens when a career working Mom (me) suddenly has to leave her career to care for a severely disabled medically fragile child.  

From Career to “Caregiver /Stay at home Mom”

Welcome back friends.  I think many women go through identity crisis when they have children. The life of “its all about me” becomes the life of “its all about my child”.   This is pretty normal, and a big challenge for Moms to overcome. 

For me, I had always planned on being a working Mom, I completed my MBA in 1995 and walked commencement 3 months pregnant.  I loved the field of human resources, and pursued vigorously everything I could learn about the field.  I found myself on a career track for a future in Human Resources, hoping to specialize in training and development. 

But, I walked away from working full time when my son needed me.  I resisted for a few years, but as Daniel’s needs increased, and the full extent of his disability became apparent, I knew that I could not walk in both worlds.  I left my career behind.  And our family could not afford that.  

So how does a young Mom go from working Mom, active, and involved in work and community, to Mom of severely disabled child with multiple medical issues.  It was like I walked through a door to a completely unknown alternate universe.  How?   Well…. I am sorry to say, there is literally no instructions for this task.  Because it all depends on how you build resilience.  

My short answer to how?   Is, you adapt.  Everyday, every minute as life hurls unknown questions at you.  

So I tried and tried, to adapt.  To figure out ways to maybe work part time, and still manage everything at home. 

Summary… So.  I left my full time career in human resources, jumped head first into a world of parenting a severely disabled son, and my other two children.  Struggled with financial problems.  Tried to make money while also being caregiver Mom.   Most failed. 

And somehow, I just continually adapted.  Learning, researching, asking for help, re inventing myself, starting over, enjoying watching my babies grow up.

But in my soul I still long for something more.  Some way of creating a purpose and a passion, and giving it back to the universe.  And You.   And here I am.   I feel like I am standing on side of a cliff about to take a dive into deep beautiful blue water.   Exhilarated and terrified.   

Stay home caregiver Julie was always so much more deep inside.  She is now ready to come out, and help others on their journey after they too walk through the door into the parallel universe of adapting to extreme adversity.  

How does a young Mom adapt to being a Mom of a disabled child and making it work with everything else?      You adapt.   In the process of adapting, you discover who you really are.  

YouTube Channel

 https://www.youtube.com/user/jhasselberger/featured

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In this episode, I discuss how early in our journey as special needs parents, we realized we needed help from a mental health perspective.   Once I began healing from my own trauma, I started seeking out others who were like us.  We searched for and found support groups locally, and I created my own group on Facebook, which at this time was a brand new thing.  The group is called "Polymicrogyria Support".   Today, in 2021 there are over 2500 families sharing and supporting eachother on this group.  

Adapting is hard, and as a young Mom with a baby/child who has been diagnosed with life threatening disabilities, it was very hard to navigate the world of my typical children at the same time.   I wanted to be the best in both worlds, but most of the time I felt isolated and odd. 

Maybe you know someone who is a caregiver for a disabled or medically fragile child/sibling/friend etc.   You may be here, because you have connected with me already on this topic.  I am so excited to have you here.   

I am going to continue sharing my stories of adapting, offering support and encouragement, and sharing my own struggles and fears, some of which are literally happening as I type this.  

This is the adapted life podcast.  Building resiliency as I adapt my life around the needs of my amazing but very medically fragile 23 year old son Daniel.  

You can find me on YouTube,  where I have a Vlog, or video journal of our life.   

https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

I welcome input and feedback, and sponsorship opportunities.  Learning and building here, with the goal of greater encouragement and support for those who need to learn how to adapt, and that a beautiful amazing life is possible, despite the hardships and trauma you have been dealt. 

May you have a Blessed day, lots of smiles, and happy adapting. 

for business inquiries,

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Welcome to the "Adapted Life Podcast"

A place for everyone.  Designed to be a community of people who have been faced with such extreme adversity that it caused them to change everything in their life, unexpectedly, and the fascinating process of we adapted and build resilience, even when at first everything seems so hopeless.    I am SO excited to finally launch myself into vulnerability.    Im adapting as a person just by stepping out on faith, with you.

The place in between normal and not normal.
In Episode two, I discuss the early years with my special needs son and how I literally tossed the "baby book"  into the trash can.  I found that I was going through parenting in a strange lonely place in between parenting a normal healthy 2 year old daughter and then the unchartered territories of a son with a rare brain deformation.

Adapting and learning.  I have been doing this for 23 years now, as we have re engineered our life around taking care of this special young man, Daniel, while also embracing all of the care and love for our family as a whole.   

I felt very early on, that something was growing and developing within me.  And I truly expect that great things are going to happen.

You can watch all of us Hasselbergers on:

 YouTube Channel, "Julie Hasselberger" and here is the link :
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Instagram
https://www.instagram.com/jhasselberger/

Daniel's Special Art shop on Etsy
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Support the show

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

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This is an exciting work in progress!  I have a Youtube Vlog channel, called "Julie Hasselberger" and have been planning the start of a podcast for years.  So here I am.  And welcome friends. This may be messy, but I am ready to go. 

https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Welcome Everyone!  My name is Julie Hasselberger, and this is the “adapted life Podcast!”  

In this episode I lay some foundation, and tell the story about the early years with my medically fragile disabled son.   

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I introduce myself, Julie Hasselberger, with a brief explanation of what the podcast is.   

This is an exciting work in progress!  I have a Youtube Vlog channel, called "Julie Hasselberger" and have been planning the start of a podcast for years.  So here I am.  And welcome friends. This may be messy, but I am ready to go. 

https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Welcome Everyone!  My name is Julie Hasselberger, and this is the “adapted life Podcast!”  

I have created this podcast, because there are many of you out there, who have faced life altering challenges and adversity.  Adversity which can permantly alter the life you once envisioned. 

For me?  It was when my son, in 1998, was diagnosed with devastating disabilities.  Everything changed. 

I am here now, to bring encouragement, compassion, support, community and connection. 

I have often referred to my life as being in a constant state of adapting, as unforseen challenge and crisis seem to hit me and push me off course.  Being a special needs parent, is truly like that. 

My life as a Mother to my 3 kids, a wife to my husband of 28 years, and a Professional with an MBA were altered drastically over the years because of my son’s medical fragility and severe disabilities. 

This podcast is a journey into how I actually have learned to adapt, develop resiliency, and created a wonderful life far better than I could have ever imagined when all I could see is crisis. 

I am starting here, with you.  This is a place of compassion, laughter, and learning.  

So thank you for cheering me on, as I am stepping out with complete vulnerability into this new adventure.  

This is My Adapted Life.  And I hope it will be yours too. 

Support the show

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg