ETB 42:  In this episode I talk with Kathryn Kane-Neilson about her 19 year old son, Clark who has Down syndrome.   She talks about her experiences raising Clark, through life in NYC, through divorce, through medical misadventures and fresh beginnings in Texas.

Kathryn shared,  ” At 22 years old, I was aware of the fact that I was carrying a child with Down syndrome and it absolutely changed my paradigm.  it changed my brain.  Clark is the joy of my life.  He gave me purpose.”

GHFEDS – Greater Houston Families Exploring Down Syndrome
http://ghfeds.org/

Connect with Heather – frequently mentioned on this podcast!
Medicaid Resources Website:  http://texasmedicaidwaivers.com

Connect with Sandy
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/

ETB 38: In this episode I share a few stories about Josiah from the past few years when he was walking through a very long, very difficult season.  With so many challenges including aggression, destruction and self-injurious behaviors it was easy at times to lose sight of hope.

As a mom desperately trying to figure out how to best help my child,  it was heartbreaking to watch him struggle so much.  There is nothing like watching someone you love suffer and feel powerless to alleviate it.  Even after all the interventions, it was discouraging to see little to no improvement.

But I’m here to tell you, things drastically improved.  Despite the daunting forecast from a psychiatrist who told us Josiah would spend the rest of his life in a long-term psychiatric facility because he was too combative and self-injurious to live at home,  Josiah has become a different person.  He has made remarkable progress and continues to amaze me with his growth and abilities.

Don’t give up on your kids!  If you are in a difficult season and can’t imagine how things could ever get better, hang in there!  Pray without ceasing, reach out to others, seek support from those who has been where you are,  get respite if you need it but don’t ever give up hope!

Respite Care:
https://www.navigatelifetexas.org/en/family-support/respite-care-for-children-with-disabilities

Support Groups for Parents of Children with Special Needs:
https://blog.bayada.com/be-healthy/eight-support-groups-for-parents-raising-children-with-special-needs

GHFEDS – Galveston Houston Families Exploring Down Syndrome
http://ghfeds.org/

Connect with Sandy
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/

ETB 34:  In this episode I talk with Beth Haas, teacher and mother of 3 beautiful daughters about her oldest daughter, Annalee who has Down syndrome.   During the 18th week of Beth’s first pregnancy, she and her husband John were told their unborn baby had hypoplastic left heart syndrome and was probably not going to be compatible with life.

Hypoplastic left heart syndrome (HLHS) is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly.  Without surgery, hypoplastic left heart syndrome is deadly, usually within the first few days or weeks of life.  With treatment, many babies survive, although most will have complications later in life

When they learned at birth that Annalee’s diagnosis was Down syndrome, not hypoplastic left heart syndrome, it was a miracle.

Annalee was in the NICU for a while and had open heart surgery at 23 months.  She also was unable to have thin liquids without aspirating them into her lungs, so initially she had an NG tube.  All of her liquids needed to be thickened for years, but with therapy and training and the right kinds of straws, Annalee eventually learned not to aspirate.

Now at age 17, Annalee is included in general education classes, participates in student council and was also invited to be a part of the Groundbreaker’s Leadership team at her high school.

She takes classes at the Kennedy Dance Studio, has choreographed her own dances, going all the way to the national level in the PTA Reflections Annual Art Contest under the category of Dance Choreography and brought home a bronze medal this year.  She has her own Youtube channel where you can see her perform some of her dances.

Annalee will be in the TET (Teacher Education Training) Class at high school this year,  teaching classes in the same elementary school where her mom teaches.  TET provides high school students with teaching experiences to determine whether or not they would like to pursue a career in public education.  The goal is for Annalee to get a certification to become a teacher’s assistant.

Teaching Your Child with Special Needs To Ride A Bicycle in 4 Easy Steps
https://twominuteparenting.com/how-to-teach-your-child-with-special-needs-to-bike-in-4-easy-steps/

Kennedy Dance Theatre:
https://www.kennedydance.com/

PTA Reflections
https://www.pta.org/home/programs/reflections

Connect with Annalee
https://www.youtube.com/channel/UCQrw1d2I2ShE0tcecHJBQbA

Connect with Sandy
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/

EBT 23:  In this 2nd half of a 2 part episode I continue to talk with Cynthia Rodriguez, amazing mom, grandma, and special needs advocate who loves to reach out and help others.  If you have a child with a disability and happen to  cross Cynthia’s path somewhere out in the world,  more than likely she will strike up a conversation to check in with you to see how things are going.  She’ll offer suggestions and resources and may even accompany you to the right agency to get you the help you may need.   That’s just who she is.

Yet, 24 years ago when her son Victor was born with Down syndrome, Cynthia didn’t even want to hold him for the first few days.   Life took an abrupt turn at that point and it took Cynthia a little while to accept all the changes.  From initial reluctancy to totally embracing her new journey, Cynthia is a source of love and laughter, drawing others in with her joy and making a positive difference for so many.

In addition, Cynthia does Court monitoring visits for people who have guardianships to make sure they are being treated properly and have everything they need.

If you haven’t heard the first half of Cynthia’s interview,  be sure to listen to it in its entirety.  You won’t want to miss any of her inspiring perspective.

GHFEDS
http://ghfeds.org/

HCS – Home and Community Based Services
https://www.hhs.texas.gov/providers/long-term-care-providers/home-community-based-services-hcs

Health Insurance Premium Payment (HIPP) Program
https://www.hhs.texas.gov/services/financial/health-insurance-premium-payment-hipp-program

Side by Side Parent Support Team: League City
https://www.facebook.com/groups/155613631266509

STAP – Specialized Telecommunications Assistance Program (STAP)
https://www.hhs.texas.gov/services/disability/deaf-hard-hearing/stap-services

Swallowing and Speech Services
https://www.swallowingandspeechservices.com/

Texas Medicaid Waivers
https://texasmedicaidwaivers.com/

Connect with Sandy
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/

EBT 22:  In this episode I talk with Cynthia Rodriguez, amazing mom, grandma, and special needs advocate who loves to reach out and help others.  If you have a child with a disability and happen to  cross Cynthia’s path somewhere out in the world,  more than likely she will strike up a conversation to check in with you to see how things are going.  She’ll offer suggestions and resources and may even accompany you to the right agency to get you the help you may need.   That’s just who she is.

Yet, 24 years ago when her son Victor was born with Down syndrome, Cynthia didn’t even want to hold him for the first few days.   Life took an abrupt turn at that point and it took Cynthia a little while to accept all the changes.  From initial reluctancy to totally embracing her new journey, Cynthia is a source of love and laughter, drawing others in with her joy and making a positive difference for so many.

In addition, Cynthia does Court monitoring visits for people who have guardianships to make sure they are being treated properly and have everything they need.

GHFEDS
http://ghfeds.org/

HCS – Home and Community Based Services
https://www.hhs.texas.gov/providers/long-term-care-providers/home-community-based-services-hcs

Health Insurance Premium Payment (HIPP) Program
https://www.hhs.texas.gov/services/financial/health-insurance-premium-payment-hipp-program

Side by Side Parent Support Team: League City
https://www.facebook.com/groups/155613631266509

STAP – Specialized Telecommunications Assistance Program (STAP)
https://www.hhs.texas.gov/services/disability/deaf-hard-hearing/stap-services

Swallowing and Speech Services
https://www.swallowingandspeechservices.com/

Texas Medicaid Waivers
https://texasmedicaidwaivers.com/

Connect with Sandy
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/