1. Helping Your Kid Be a Kid
Beyond the Patient

2. 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!

3. 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

4. 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?

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

6. 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

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

8. 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.

9. 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!

10. 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

11. 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

12. Navigate Life Texas

13. 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