Getting to see the view from the other side of the fence is always interesting, and those of us who are both doctors and parents of children with special needs have a unique perspective. Our knowledge of medicine and the health system is both a blessing and a curse as we face the daily challenges that parenting our children bring. We would like to share with you our experiences from this side of the fence, to give you a glimpse of the reality of day to day life, as well as to offer you our “wishlist” for our interactions with doctors and the health system.
This presentation is born out of the MMAMTB Special Kids offshoot group. We all wish we didn’t need to be in the group, but are glad to have found it. Our children have a wide range of diagnoses (from autism, to cerebral palsy, to CF, to childhood cancer, to Angelman Syndrome and many more), but despite our many paths, our experiences have been universal. We will discuss some of the elements of this experience, including the increased “lifeload”, the emotional load and the medical reality, as well as our medical wishlist.