03. Surviving and Thriving When You have a Child With Extra Needs

Speakers: Kelly Frey Luhn and Jason Luhn

*These speakers will be presenting virtually.
**This session is available for in person and virtual attendance.

We are normal, everyday parents raising an extraordinary 12 year old child.  Like so many other parents, the stress is unbearable at times.  Physically you are pushed to the brink.  Mentally you are drained.  Emotionally you are exhausted.  We hope to have an open and honest dialogue about the challenges of parenting a child with extra needs, how this has changed us personally and how it has affected our marriage.  We also hope to answer questions from others and provide a safe place to talk and exchange ideas and support.  Studies show that divorce rates among couples with special needs children is at a startling 80%.  Caregiver burnout is at an all time high after the pandemic.  More than ever, we need help and support and resources and ultimately human contact to know that we are not alone.  Join us for a frank discussion, get your questions ready and any information that you would like to share.    We can all learn together!

Credits: Act 48, ASHA

Audience: Special Education Teachers; Teachers who work with students who are blind or visually impaired; Teachers who work with students with hearing loss; Teachers who work with students who are Deaf-Blind; Teachers/other professionals who work with students who have sustained traumatic brain injury; Speech therapists; General Education Teachers; Supervisors/Administrators; Assistive Technology Specialists; Occupational Therapists and/or Physical Therapists; Orientation and Mobility Specialists; School Counselors and/or School Psychologists; Parents, Guardians, Family Members; Paraprofessionals

Speakers’ Bio: 

Kelly and Jason Luhn and Family 7 weeks into the pregnancy of their first child, Jason and Kelly were given the news that their child had a severe brain malformation and   most likely would not survive birth. Fast forward 12 years, and today, they are parents to a vivacious, non-verbal, 5 foot 8, 145 pound son   named Bennett, who was born with multiple medical issues including Intractable Epilepsy and Dandy Walker Malformation. Bennett does   require full care, uses a wheelchair and the daily challenges and physical demands are many, but Jason and Kelly are determined to   live everyday to the fullest and not only survive, but thrive as a couple and a family...no matter what. Bennett has an amazing ten year   old sister, Marena and two dogs, 5 cats and a beta fish named Jaws. After more than 20 years of active duty, Jason recently retired as a   KC-135 pilot from the 171st Air Refueling Wing and Kelly continues to anchor the morning news on WTAE-TV from 4:30-7 am.
 Email: Kellyluhn@gmail.com Facebook: https://www.facebook.com/BuildingForBennett/and https://www.facebook.com/KellyFreyWTAE
 



Closing Thoughts from Kelly and Jason Luhn

  • Someone I love relies on me in ways you will never understand.
  • Someone I love endures pain and challenges that break my heart and renew my spirit at the same time.
  • Someone I love is unable to advocate for themselves for things that most of us take for granted.
  • Someone I love will never have the opportunities that every child should have.
  • Someone I love will need unconditional love and support after I am gone - this frightens me to the core.
  • Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others.
  • Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet.
  • Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world.
  • Someone I love has needs that require more time and energy than I have to give.
  • Someone I love has needs that mean I have trouble meeting basic needs of my own.
  • Someone I love has needs that have become the driving force behind major decisions my family makes.
  • Someone I love has changed me in ways that words simply can’t describe.
  • Someone I love has taught me about love and about the really important things in life...
Thank you Bennett for who you are.  You are a gift.  A miracle.  And we are blessed to be your mom and dad.... 


Bennett has Dandy Walker, a rare brain malformation that affects over half of Bennett’s brain. He also has Intractable Epilepsy, Brain Stem Hypoplasia, Gray Matter Migration, Hypotonia, etc. We celebrate him every day, and we work with the struggles and differences that the disabilities have brought into his and our lives.

Our role is to help Bennett and others understand his purpose in this world just like you and me. His purpose is as great and worthy as yours.

Check out: http://dandy-walker.org/

https://rarediseases.org/rare-diseases/dandy-walker-malformation/

https://www.ninds.nih.gov/Disorders/All-Disorders/Dandy-Walker-Syndrome-Information-Page