By Cathy Jameson It’s never more than a 20 or so minute meeting with one of our case managers.  Last week’s went well beyond that, creeping up to almost 2 hours.  We pick evening hours for these meetings so my husband and I can sit together, learn together, and advocate together for our son with special needs.  I manage much of the day-to-day, but we are in step with what work needs to be done, work in the moment and in the long-term.  For weeks before, and up to that evening meeting, we fought together for Ronan.  I could have handled the most recent problem we’re having.  But we immediately brainstormed what needed to be done and reached out to people together.  Those people could have resolved some of the issues when they were brought to their attention by an overseeing agency, but it’s now turned into a long-term issue that includes losses.  Concessions were made to no avail.  That forced us to make adjustments where none should have been made.  These have been costly and now affect aspects of everyday living. Services. Direct support. Our caregivers. Even though last week’s meeting was as long as it was, nothing was resolved.  More worrisome, we’re not on borrowed timeanymore; we have simply run out of it – for services and that direct support from our amazing caregivers.  Besides the loss of hours of direct care that impact Ronan’s needs, it’s nowimpacted me, my husband, our jobs, and our family.  Where one simple click of a button could have seen Ronan’s long-standing and necessary services continue, we’re now resubmitting already filed forms.  We’re re-documenting the laundry list of diagnoses line by line.  We’re including supplemental information that we pray someone up the admin chain will understand.   It’s invasive. It’s unnerving.   It’s beyond frustrating.   It’s for Ronan, though, so we march ahead together.  Hoping.  Praying.  Fighting.  For our son who relies on us to speak up for him.  For his rights.  To keep what was working.   We expect adjustments every now and then, because… that’s life.  But having to adjust what was working because of someone else’s lack of attention is unacceptable.  And believe me, we’ve made that known.  That hasn’t mattered yet as we are no closer to resolving the latest worry.  We’re no closer this week than we were last week.   So onward we march.   Together.   For Ronan, because he is worth every step forward.     Cathy Jameson is a Contributing Editor for Age of Autism.