Casey's Circle

Casey's Circle

Strengthening Circles – Improving Quality of Life

Casey's Circle
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All posts by Marty Barnes

Sam’s Story

This month we are joined by Allison all the way from Florida. Allison share’s her son’s story, Sam. Sam had a birth injury that resulted in HIE. He was not expected to survive a single day and he lived 15 years! Allison talks about learning new medical equipment (feeding tube, suction machine, trach, standers, wheelchairs, etc), Medicaid waivers, special education, home health, ordering supplies from the DME and balancing all of this while finding time to be a family and enjoy time together.

Helpful Resources Mentioned in the Video:

  • HIE
  • RSV
  • Pool Floats
  • Blended Diets
  • CBD and THC for Seizure Treatment
  • Family Centered Care
August 29, 2020 Leave a comment

Sophia’s Story

Jennifer, Sophia’s mom, shares their story with getting a diagnosis, balancing raising a medically fragile child as well as a healthy older sibling, learning to communicate, managing a medical life in the midst of COVID and much more. In this week’s Tuesday Talk you can learn about Actin Myopathy, assistive communication devices, respiratory equipment, fining support, and many other aspects of being a parent to a child with special needs. If your child has a myopathy, is on a trach/vent, or needs technology to help communicate you will want to hear all of the great information that Jennifer shares.

Helpful Resources Mentioned in the Video:

  • Actin Myopathy
  • Nemaline Myopathy
  • Tobii Dynavox
  • Snap Core Communication Software
  • Muscle Biopsy
  • High Flow Nasal Cannula
  • Tracheostomy
  • Intrapulmonary Percussive Ventilator (IPV)
  • Cough Assist
  • Texas Medicaid Waivers
  • US Medicaid Waivers by State
  • Ventilators
  • Kids with Vents – Facebook
  • Nemaline Myopathy – Facebook
  • Palliative Care
August 3, 2020 Leave a comment

Hendrix’ Story

Welcome to our latest Tuesday Talks addition. Each month, on the first Tuesday, we will highlight a different families story. To kick things off we are starting with Hendix.

Hendrix’s biologic grandma, Jessica, shares their story. Jessica has been Hendrix, or Henni’s, guardian for about 4 years. Around Henni’s first birthday she was involved in a non-accidental trauma. As the case is still open, we will not go into specifics of the case here. Instead we will talk about how this trauma impacted Henni and her families lives, some of the challenges they face, helpful resources, and tips for other parents. Jessica shares details about Henni having multiple strokes, brain surgeries, the loss of the beloved Dr. George, and much more.

Helpful Resources Mentioned in the Video:

  • Team Luke Hope for Minds
  • Comprehensive Care Clinic
  • Dr. Timothy George
  • Pediatric Stroke
July 7, 2020 Leave a comment

Luca’s Story

As part of our Tuesday Talks, we are talking with many different families. This story focuses on one family’s journey with mental health. While the story mainly looks at Luca, Jennifer, his mother, also talks about Luca’s brother, Lorenzo. Luca and Lorenzo were both diagnosed in their early 20’s with a mental health disorder. Lorenzo was diagnosed with schizophrenia and Luca was diagnosed with bipolar. Their mother talks very openly about identifying their needs, getting help, getting a diagnosis, the challenges related to treatment and self medicating, and ultimately she also talk about Luca committing suicide. This is a very honest and raw discussion about a topic that many people are struggling with today. You can find helpful resources below as well.

Helpful Resources Mentioned in the Video:

  • NAMI National Alliance on Mental Health
  • Shoal Creek
  • Dell Children’s Pediatric Mental Health Facility
  • Suicide Prevention
July 7, 2020 Leave a comment

Surviving COVID-19

COVID-19 has impacted the entire world. The World Health Organization (WHO) put out “Do the 5” to help everyone try to reduce the spread of the virus as some great visual aids and references. The CDC has frequent updates with the numbers of people infected, prevention measures, symptoms, and more.

Unfortunately the special needs community already knows how to social distance. This is something we all do everyday to keep our kids as healthy as we can. While we may be good at social distancing, it’s still hard when everything is closed or cancelled. We were very sad to cancel our upcoming event, but decided to share some fun ideas to help pass the time.

The Canadian National Institute for the Blind (CNIB) put together an AMAZING document (77 pages) with lots of ideas on crafts you can do at home to make sensory toys and tools. These were designed for children that are blind or visually impaired, but many of these ideas are fun for all types of kids.

Download CNIB Craft Ideas

One of our local families had a GREAT idea! If you have a webcamera get a few other friends with kids the same age and setup a video conference. You can do this for up to 40 minutes free with Zoom. Or Google “Video Conference Apps” and you can find lots of options. Have each of the parents pull up or print out the same list of items for a scavenger hunt. Have the kids all run and find the item on the list. The first one to bring it back and hold it up for all to see gets a point (then go on down the list of items). The kids will love being able to see their friends online and it’s a great way to break up the day. We have put together a few lists for you. One is for younger kids while the other is for a little older. You can click on the images to make them larger and easy to read or print out.

Young Kids
Young Kids
Older Kids
Older Kids

Just getting outside is always a great idea too! Go for a walk, ride bikes/scooter, jump on the trampoline, run through the spinklers, etc. I LOVE seeing all the kids outside playing and families walking together. It reminds me of when I was kid. Here is a fun list that you can use to add a scavenger hunt to your next family walk:

Outdoor Scavenger Hunt

One of our AMAZING Junior Volunteers came up with even more fun ideas to do at home. She created a few videos in honor of April being Global Volunteer Month. You can watch these on our YouTube channel:

Casey’s Circle YouTube Channel

Other Ideas to do at home with kids:

  • Bake
  • Play a board game
  • Draw or color a picture
  • Read
  • Keep a journal or diary
  • Do crafts
  • Go for a walk
  • Plant flowers or a garden
  • Write a letter to a friend or family member
  • Living room dance party
  • Build a blanket fort
  • Have a picnic
  • Sing
  • Learn a new language (or make up your own)

If you have ideas and would like to share, please feel free to add a comment below. We always love to hear from you!

March 28, 2020 Leave a comment

Casey’s Christmas – 2019

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December 17, 2019 Leave a comment

2019 Casey’s Christmas

On Saturday – December 7, 2019 we hosted our 8th annual Special Needs Holiday Party. This year we had 3 parties all in one day. Our amazing friends from Dell Children’s Palliative Care helped us to host this event at the Dell Children’s auditorium. This is such a great place for events like these and it’s always so nice for the kids to get to go to the hospital for a fun reason instead of medical reasons.

Kids and families enjoyed Santa, crafts, Curious George, door prizes, holiday music sing-a-long, HEB’s Buddy and snacks.

Special Thanks to Our Sponsors:


Additional Thanks to Our Door Prize Donors:

  • target=”_blank”>Pediatric Home Healthcare
  • Bath and Body Works
  • The Lucas Family
  • The Flores-Ramos Family
  • Starbucks
  • Torchy’s

We look forward to seeing you all again soon!

Check out our photos from the event: ALBUM

December 17, 2019 Leave a comment

Angel Ornament Dinner 2019

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December 11, 2019 Leave a comment

2019 Special Needs Family Jamboree

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October 2, 2019 Leave a comment

Secret Life of Pets 2 – 2019 Movie Event

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June 13, 2019 Leave a comment

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