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.
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.
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.
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.
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.
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.
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:
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:
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.