Families of children with special needs will often be happy to tell those who care (and have the patience to listen) just what managing their child’s disability and/or health care needs truly entails. The hours spent coordinating care, arranging for a mind-numbing list of appointments, meetings, and conferences, not to mention occasionally trying do something ” normal” like the neighbors, pile up.
I have often been struck by the ” project management” aspects of caring for a child with special needs, and the sheer tenacity it requires to both elevate and keep all the plates spinning. As any parent of a child with special needs knows, if one plate crashes, the whole cupboard often follows. The risk of exhaling, or letting your attention wander too long to something shiny off in the corner, is often grave.
So the next time someone who is not in the know asks what you do, just pass them this; in fact, go to one of those t-shirt web-sites like Zazzle and have the list transferred to an acid green T, and wear it with unabashed pride.
The text of these handouts is also available online:
“Disability Etiquette: Some Do’s and Don’ts — from the Parent’s Perspective” is on page 31 of Practicing Comprehensive Care: A Physician’s Operations Manual for Implementing a Medical Home for Children with Special Health Care Needs, by Thomas J. Silva, M.D., Lisa A. Sofis, M.P.A., and Judith S. Palfrey, M.D., published by Institute for Community Inclusion at Children’s Hospital in Boston.
I’d add to it:
DON’T tell the parent to go google the diagnosis or search for support groups on the Internet. The information on the Internet is just plain overwhelming and frequently scary. The most important thing a parent needs to know is the truth about what the diagnosis means for the child’s future and what the next course of action should be.
DO try to find a couple of minutes to call the parent a couple of days later to see how they’re doing and if they have any questions, even if they seem very composed and knowledgeable during the diagnostic visit. It may take a couple of days to sink in and a week later they might be weeping, worried about their child’s future.
(Feel free to add your own DOs and DON’Ts and items to the other lists as comments)
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