Self Advocate

Today we met with Audra, our service coordinator from SKIP of NY.  SKIP is one of several service coordination agencies in our area.  In NY, we are assigned a social worker to help us register for the Medicaid waiver and find out about appropriate programs and services to help our kids.  We meet face to face in our home with our social worker about once every 3 months.  Audra is one of those people who goes above and beyond her call of duty.  She calls me whenever she finds out about a new program, offers to make difficult phone calls, attends IEP meetings, and genuinely listens and cares about what you have to say.  

Usually our meeting is very straight forward.  I talk with Audra while Philip wanders around the house after a quick “hi.” There usually is very little to report and we are done in 20 minutes.  I sign on the line as Philip’s advocate and we’re done.

Today was different.  For the first time, I sat Philip with us at the dining room table.  I had told Audra about Philip’s breakthrough on the phone, but she had not yet seen him communicate.  I held the letter stencil for Philip and told him he will now be his own advocate.  Audra said hi and asked how he was doing.  “GOOD,” Philip spelled.  “IT IS NICE TO SEE YOU.”  Audra was so impressed.  Philip eventually slipped away as Audra and I talked at length about Philip’s progress, about changes happening in service coordination, schools, and other things.  In fact, we were so engrossed in conversation that 2 and a half hours sped by.  Finally, we got back on track about going forward with Philip.  “What activities is Philip interested in?” asked Audra.  I told her I thought he’d be great at track or swimming, but then said, “Let me go get him.  He can answer for himself now.”  I brought Philip back to the table and Audra asked him, “Would you like to do a sport?”  “Y,” pointed Philip.  “Which one?” she asked.  “GYMNASTICS,” he spelled.  A little later we asked Philip what school he wanted to go to.  “NORMAL SCHOOL,” was his response.

At the end of the meeting, Audra asked Philip to sign his individualized service plan (ISP) on the line where it said client and above where I would sign as advocate.  I was touched that she treated him this way, giving him ownership of his plan.  This was the very first time he was asked to sign anything.  I did put my hand over his to give stability to his hand which on his own cannot form letters yet.  I allowed his hand to move under my own.  As he wrote, he spoke out loud, “P-H-I-L-I-P, R-E-Y-E-S.”  I also signed my name as advocate.  I feel so blessed to be his advocate.    

Then, with eyes watering, Audra broke the news that she would no longer be our service coordinator.  She was promoted to a new position in a completely new branch of the agency.  I was crestfallen.  I told her how much I appreciated her and how I completely understood why they would promote her.  She was so kind and always gave her best.  She expressed gratitude for having gotten to know us and see Philip’s progress.  She told us she would continue to let people know about RPM and we could always stop by her office to say hi.  

We’ll miss you Audra.

Niawanda State Park- Memorial Day 2013