SHARE YOUR OWN STORY: EMAIL US EVALUATE THIS SITE

• Hoping for a miracle
• Dealing with systems issues
• Need for advocacy
• Concrete resources
• Transitioning to adulthood
• Winning the game

Hoping for a miracle

The challenge is that the parents are always hoping for that miracle. And they hear about other patients that maybe that I’ve taken care of about how their child didn’t walk, but now is walking; that their child wasn’t able to do ‘X’ and is now doing ‘Y’. However, these parents are very appreciative, especially the parents of older kids because they understand that successes come slowly. 

-Brian Snyder, MD, PhD, Orthopedic Surgeon, Cerebral Palsy Program

Top of Page

Dealing with systems issues

There are systems issues that I find challenging—satisfying when it works out, but challenging at the time. It can be very difficult to do something as simple as getting four physicians in the same room at the same time to discuss a child’s care. Sometimes there are frustrating things that have to do with getting needed medications or equipment approved.  It’s very frustrating when, for example, a child grows out of a wheel chair but because they got their current wheelchair recently they don’t fit the insurance criteria to get a new one. I think those frustrations drive a lot of us in this field to becoming advocates for our patients, to try to get them what they need and also to teach families how to become effective advocates themselves. 

-Emily Davidson, MD, MPH, Pediatrician, Complex Care Services, Developmental Medicine Center

Top of Page

Need for advocacy

When parents get a new diagnosis of cerebral palsy, I don’t think they have any idea of how much of an advocate they will need to become to get their child’s needs met.  Even when there are many resources, families need to be assertive to get them, and the health care system is not always set up to be as patient-friendly as it should be.

-Emily Davidson, MD, MPH, Pediatrician, Complex Care Services, Developmental Medicine Center

Top of Page

Concrete resources

Sometimes, the overwhelming challenges are the emotional ones, and other times it can be the concrete things.  How does the family get to and from appointments without a van?  Who pays for equipment?  How do they make time in the day for therapies?  There have to be resources made available to families facing these challenges and, more importantly, an awareness that these are challenges. 

-Susan Shanske, LICSW, Licensed Social Worker, Cerebral Palsy Program

Top of Page

Transitioning to adulthood

When a child turns 18, they are legally an adult.  This is not a process that happens on one birthday for anyone, but for young adults with CP, the process of transitioning to adulthood is often more complex.  There are many issues to explore, including guardianship if necessary, and generally moving from a pediatric mindset to thinking about the care of an adult.  This transition must be a process that families consider as the child develops, giving the young adult all the tools they can possibly use to be as independent as possible.  It is always a challenge to consider the idea that independence may not be a possibility, and how the entire family will best be supported in the future.

-Susan Shanske, LICSW, Licensed Social Worker, Cerebral Palsy Program

Top of Page

Winning the game

I think as a surgeon, it’s easy to try to set yourself up to do one job, do it perfectly, have exactly the right outcome, and therefore sort of “win the game”. But, I think that winning really matters to the individual and for the individual in the one thing you’re trying to accomplish.  So, we’re trying to set our expectations realistically, and then convey what those expectations are to the family and not seem like we’re shooting too low.  You always want do the most you can and people come here because they are hoping for a miracle. The frustrating part, the hard part is when there is an expectation that you—on your part or on the parents’ part—that may be unrealistic, and trying to achieve it at the sake of doing too much or not doing enough is a hard thing to reckon with.  I think that what you can give them is a realistic idea of what’s possible, and if you know somebody else out there who can do a better job, then let them get there and help them get there.

-Travis Matheney, MD, MLA Orthopedic Surgeon, Cerebral Palsy Program

TOP OF PAGE