An advocate is a great tool for any family with a child who has a disability. I had an advocate fairly early in my educational career. The role of this person was to essentially act as a second set of ears when my parents had meetings in my case about schooling but I’m assuming the same approach could work where medical issues were concerned as well.
Having the second set of ears was helpful for my mom who could later re-examine things which sometimes led to the realization that she had either completely misinterpreted or had entirely missed something pertinent.
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