Helping Your Kid Be a Kid Beyond the Patient

Meet Casey! Casey was born with MANY medical complications and was not expected to survive 1 night- much less nearly 10 years. She was always the most complex kid in the room- but that never stopped her from being a kid!

Common Challenges Staring Questions (good & bad) Having a bad day Exit Strategies Over Stimulation Germs Equipment (batteries, backups, etc) Support Staff (nurses, attendants, etc) Transportation

Finding Balance How do you provide social opportunities without major health set backs? How to make sure there is time for fun stuff while still maintaining your schedule of therapies, school, work, etc? Maybe adding a service like Palliative Care to help with balance as well as many other things?

Recon Go there! Talk to the staff Talk to other parents Check online reviews Call during off hours and talk to a manager

Modify The Environment Go during off hours Make special arrangements This may require a LOT of planning This may cost a little extra Bring the environment to YOU Reach out to other parents or special needs groups

Pick your outings and activities carefully Make It Count! Pick your outings and activities carefully

Do what works for YOU- don’t worry about your friends and family We all want to have the picture perfect holiday, birthday, etc. For a lot of our kids, the image we have in our heads, or what we see our friends and family do, simply doesn’t work. Stop following the same format as everyone else! If your kid doesn’t eat by mouth, it’s okay to NOT focus on the birthday cake. If your kid can’t tolerate sitting up, modify the setting so he/she can lay down. It’s not about keeping up with the Jones, it’s about making every moment count and doing what makes sense for YOUR child.

Learn to say NO FOMS is very real, but sometimes you really do need to say no Your friends will invite you again Your family may pressure you a lot, and may even get angry (depending on what you are saying no to) but they will get over it Relationships that can’t survive an occasional ‘NO’ are not healthy relationships!

It Begins With YOU You get back what you put out Most people really are curious, not malicious Practice, and prepare for some of the common reactions you get The more comfortable you get, the better your outings will go

A Few Ideas Casey’s Circle Morgan’s Wonderland Play for All in Round Rock (Round Rock PARD Activities) 2Dance2Dream (along with 2Ride horses, 2Night respite) Cpals/CPATH Team Bravo (tumbling) SNAP (YMCA programs – offerings vary by location) Easter Seals Play groups YES! Crusaders (Fitness) Camps Camp CAMP Camp in Motion Camp Summit

Navigate Life Texas https://www.navigatelifetexas.org

Casey’s Circle http://caseyscircle.org Special Needs Events Holiday Party Movies Birthday & More Bereavement Events Family Picnic Holiday Remembrance Mom’s Breakfast Club Monthly Parent Training Child care included Dinner included Online Tools Product Review Home Modifications Activity Guide (by parents) Medical Form Template