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!

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:

We look forward to seeing you all again soon!

Check out our photos from the event: ALBUM

2019 UNBirthday Party

On Monday, May 13th, we hosted our 3rd Annual UNBirthday Party. We changed things up a little this year to make this event bigger and better. We partnered with the City of Round Rock Parks and Recreations’ Adaptive and Includive Recreation (AIR). We LOVE partnering with this amazing group of people! We moved the event to the Play for All accessible park in Round Rock. This park was always a special place for us to go with Casey. It’s fully accessible and so colorful and fun for kids of all abilities and all ages.

HMH Publishing sent Curious George and the Man in the Yellow Hat to greet the kids. They also donated beautiful coloring books (wrapped) for the kids to have as a special UNBirthday gift. Build-A-Bear donated a bunch of teddy bears for the kids to have as gifts as well.

When we started to look into changing things up this year we sent a survey to some of the families that have attended previous years. Many of them commented on how much they love the unbirthday cake. Amy’s Ice Cream blows us away every year by making and donating gorgeous and delicious cakes. Every bite of the cake was eaten.

We were able to get Panda Express to donate a bunch of dinner boxes for families this year. It was really nice to have a dinner option so families did not have to leave early or come late to get everyone fed.

Round Rock fire and police were on site for the kids to explore the vehicles and talk with first responders. Kids LOVE seeing these cars/trucks up close. It was so nice that they came by to offer a little extra fun for the kids.

We (Casey’s Circle and Round Rock) brought in Tiny Tails and face painters to round out the party entertainment.

The SUPER talented Natalie from Natalie Ebaugh Photography volunteered her time to come and capture lots of great pics of everyone enjoying the park. We saw a lot of familiar faces, but met a lot of new families as well. We are already planning and looking forward to next year’s UNBirthday Party!

Thank you to everyone that joined us and to all of those mentioned above that helped to make this event extra fun for the amazing families we support.

Check out photos here – Continue to Album

Special Thanks to Our Sponsors:

2018 Holiday Party

On Saturday, December 8th, we hosted our Annual Special Needs Holiday Party. Along with the Palliative Care Team of Dell Children’s Medical Center we gathered families together to celebrate the holiday. We hosted 2 parties again this year. We had one that was invite only that we kept small for our more complex families, then we had a larger party for all special needs. Both parties were a ton of fun!

Santa had books for all of the kids, and we had gift baskets donated by local organizations as well as some donated by individuals that we were able to hand out to families as door prizes.

This party continues to grow each year, and we want to say a very special thank you to all of the amazing companies and individuals that help us to make this party such a success…

Our gift basket donors:
Neotech Home Health
Abilitees Adaptive Wear
Star of Texas Keepsake Collectors
Gigi V

HEB provided all of the food and drinks, as well as the cups, plates, etc and they delivered it all. This year HEB sent Buddy along to hand out treats and welcome all of the party guest. HEB supports a lot of local charities and we are so grateful for all that they do for us and other organizations like ours.

Houghton Mifflin Harcourt sent Curious George and the Man in Yellow Hat to read the kids some stories. HMH also provided new books, all wrapped, for Santa to hand out to all of the kids that attend the party.

Aveanna Healthcare provided all of the crafts for the kids to do, as well as many volunteers to help with the event.

Nic volunteered his time to do photos from the first party and Sheridan volunteered her time to take photos during the second party. We are so thankful to have such talented and generous volunteers!

We are looking forward to seeing everyone again soon!

Fox 7 Austin and KVUE both came out and covered the earlier party.  You can see those stories here:

Fox 7 Austin

Check out photos from this year’s parties – Continue to Album

Angel Ornament Dinner – 2018

sMilesforSammyMainLogo1On Wednesday, December 5th, we teamed up with sMiles 4 Sammy and the Palliative Care Team at Dell Children’s for our 5th annual angel dinner.

We had a wonderful time sharing memories of the children that have passed with the sweet families that joined us. Chuy’s in Cedar Park works closely with sMiles 4 Sammy and donated dinner to them for everyone. This has become one of our favorite annual events. We love to spend time with these families and bring them together to support one another. We are looking forward to seeing them all again soon.

Here are some photos from the dinner – Continue to Album

Casey’s Circle BINGO Fundraiser – 2018

On Tuesday, November 6th, we hosted our first ever fundraiser. We invited everyone to join us at the beautiful Lone Oak Barn for a fun night of Bingo, BBQ, and Open Bar. We raised a lot of money to help fund our services for 2019. The entire evening was planned down to the last detail by Hennithing is Possible Weddings. If you need an event planner be sure to call to Henni- she is FANTASTIC!

In addition to the wonderful people that joined us at the event, we had amazing support from the community. Thank you so much to all that helped us to make this event a success!


Event Sponsors:

Rising Starz Entertainment

Silent Auction/Event Donations:

Check out photos from the event – Continue to Album

Show Me the Money

There is one question I get asked a LOT- what are some programs out there to help cover the cost of the items my kids needs? If that many people are asking, I figure this is something worth sharing with all of you as well.

Surprisingly, there are actually a good number of organizations that can help with financial needs for families in the Austin area. Some are local, some are statewide, and some are across the country. Hopefully these may be able to help you.

First up let’s talk about a grant program available to families across the US. United Healthcare Grants will give up to $5000 for some cases. There is a lot of paperwork, and it is income based. However, that does not mean you have to be on SSI to apply. You can find more details, and apply here:

There are 3 organizations that focus on Texas families. Variety offers grants up to $5000. They have different categories that they support. You can find more details on qualifications and how to apply here:

CPATH grants up to $500 for equipment. Depending on the specific item you need $500 may be great, but it may not be enough. The good thing about this one is that it is NOT income based. Here is the link to apply:

Be An Angel offers grants to help pay for respite, camp as well as some equipment needs. To apply:

Another grant program available is specific to the 4 points area. If you live in this area, Hill Country Special Needs Alliance may be able to help with a handful of different needs. They have been known to cover nonstandard therapy, camp, equipment, and many other medically necessary items that insurance does not cover. You can find out more about the area they cover and apply here:

If the grant programs don’t work out, maybe you would consider used equipment. Many organizations find items that have been outgrown, no longer needed, etc and match it up to families like your own that need them and are having a hard time getting them covered:

Parker Lee Project

Project Mend

One last suggestion is to look on Facebook. There are groups where people will post ISO (in search of) and list items they need. Or FFS (Free For Shipping) and list items they don’t need and will send you if you can cover shipping. There are LOTS of these groups. The best way to find them is to search for “medical supply exchange” and you can then request to join any that come back in your search. Some are local, some are US, some are worldwide, some are specific to a diagnosis or type of equipment too.

KOOP Radio Interview

On July 31st Casey’s Circle Founder, Marty, Board Secretary, Val and some of our long time volunteers, Sara, Rachel and Natalie were part of KOOP’s Community Pilot Show. They talked about the history or Casey’s Circle, a little bit about Casey herself, and much more.

If you were unable to listen to the interview, you can stream it below:
[mp3t track=”Interview@” stop=”Pause”]

Bug Off!

Summer Tips to Help Reduce Bugs

I grew up in Central Texas and bugs and sunburns were just part of our summer routines each year. After becoming a mom, these became a much bigger deal. My daughter could not shoo away a bug or run inside away from it. If a fire ant found a way to her she would not be able to brush it off and scratch the awful itch. If the sun was out she could not turn her head to get away from it or blink/squint to protect her eyes. Suddenly the sun and bugs became something I stressed about each year.

One little trick that can work for any child that spends time in a playpen (little crib) outside is super simple and has been used for years (my mom used to do this when I was a baby). The cribs have fitted sheets that you can pick up at most baby supply shops. Grab an extra fitted sheet. When you are outside use the extra fitted sheet across the top of the crib. This will prevent those nasty flying bugs from getting into the crib and potentially biting or stinging your little one.

You can make your own bug spray to use as well. I love this idea. The harsh smell that comes with the store bought sprays can be enough to put a child with sensory issues into a spin. When you are making your own spray you can use essential oils that your child likes and it will help encourage them to use the spray without the melt down. Here is one recipe that you can use, but you can find LOTS more if you Google ‘DIY Bug Spray’ or search on Pinterest.

  1. Put 15-30 drops of your child’s favorite essential oils into a spray bottle (if you can use oils like lemongrass, or citronella it will work even better- avoid using sweet smelling oils as they may have an attracting reaction instead of repelling).
  2. Add 1 tablespoon of rubbing alcohol
  3. Add ½ cup of witch hazel
  4. Add ½ cup of water
  5. Put spray cap back on bottle and shake it up

Here in Texas mosquitoes are a problem in the summer as well. Being that we haven’t had many hard freezes in a few years they seem to get worse each summer. There is a DIY trap that you can make at home. It’s pretty simple.

  1. Grab a 2 liter soda bottle (empty).
  2. Rinse it out really well and then cut it in half.
  3. Boil about 2 cups of water with ¼ cup of brown sugar (or white sugar).
  4. After the sugar dissolves let the liquid cool and then pour it into the bottom half of the bottle.
  5. Add a pinch of yeast (do not stir it in, just drop it into the liquid).
  6. Turn the top half of the bottle upside down and insert it into the lower half.
  7. Wrap the bottle in black paper (or any dark paper or tape product you have).
  8. Stick it outside and mosquitoes will get stuck in the bottle instead of bothering/stinging you.

You can watch an instructional video to see how it is done here:

One last tip, use plants to help. You can plant lavender around the house to deter scorpions. You can plant lemongrass to deter mosquitoes. When selecting any plants, talk to the people that are selling them. They can tell you if it attracts bees, wasps, etc. and they can help you find plants that fit your look without the bugs you want to stay away.

I hope these tips help you keep the bugs out and enjoy a wonderful summer with your family- don’t forget the sunscreen!

Researchers and Parents Working Together Meet Research Milestone

Many of you know all about the Casey’s Circle events, our parent training, and the many tools and resources we offer online as well as our bereavement services. Did you know that Casey’s Circle also works with medical professionals to help with research studies? Currently we are working with a group to help define the best standard of care for neonates that experience seizures. We are very excited to announce that this study has been going very well and we recently met a an important milestone.

We received funding from the Patient Centered Outcomes Research Institute (PCORI) to carry the Continued Anticonvulsants After Resolution of Neonatal Seizures study, a large, multi-center observational research study to better understand how to treat seizures in newborns. We also want to understand how the medical treatments for newborn seizures can impact families as their children grow.

Our 9 participating hospital sites and Parent Partners advisory group span from coast to coast. Families were invited to participate in the study if their baby was born at or transferred to one of our 9 study centers, their baby’s seizures began less than 4 weeks after the baby’s full term due date and required medication to treat, and the family speaks and reads English or Spanish.

We are pleased to announce that we have met our recruitment target and have 304 babies and their families enrolled in the study. As we follow these infants and their families through the first two years of their lives, we will learn about how the neonatal seizures and their treatment influence child development, later seizures, and family well-being. We hope the results of this work will help doctors and families of newborns with seizures as they make treatment decisions and will provide clear information about what to expect for the future.

For more information about the study, please visit the PCORI website:
Continued Anticonvulsants After Resolution of Neonatal Seizures: A Patient-Centered Comparative Effectiveness Study