When your child has a Disability, you have to spend time talking to The Insurance Company, The School District, Various Government Agencies, The Social Security Administration, etc, advocating for your child's rights. All these conversations end up etching a familiar pathway in your brain. Your pain and sorrow bursts forth and your anger spills over that you even have to do this type of advocacy work. Your entitlement and rage rear their ugly heads as these institutions are blocking your child's need for such services. It is true there are plenty of Customer Service Specialists and School Administrators that are empathic, but even they are limited. The norm, however, is Mike Nelson.
I spoke to Mike earlier this week from The Social Security Administration. I had a simple question for Mike. What would Willie's payments be once he moved to Camphill Soltane, now that he has turned 21? Our conversation definitely began badly. If your Special Needs kiddo receives SSI, you know how complex and confusing the language is for the benefits your child receives. I referred to Willie's benefits as Social Security Disability and Mike abruptly and dismissively corrected me with a canned script correcting my error.
I will not go on about how Mike ended up telling me that I needed to stop talking over him. In the end I asked for his Supervisor and we even had a fight over what Mike's name was. When I asked him his name, he responded: "I already told you." I didn't pay attention to that opening line of our conversation, as I have been there so many times before. When I asked him to repeat his name, there was literally a 30 second pause.
After I hung up, I was a mess. Having to defend myself to Mike when all I wished at that moment was that Willie didn't have to receive SSI. All I wanted to do was scream/cry to Mike that my son had Meningitis that caused Brain Damage, and that I wish he was like my other children and didn't need this assistance. I wanted to tell Mike how his combative attitude towards me just re-opened wounds I try so hard to keep covered. That the minute he stared being nasty, my brain reverted back to the hundreds of conversations I have had in Willie's life begging for what he rightfully deserved as a vulnerable human being. I wanted to tell Mike how tired I am of advocating and fighting for Willie. I wanted to tell Mike how our conversation had broken my spirit.
Mike Nelson's Supervisor has yet to call me back, as promised. I am not even sure I want to talk to him. I can't see a Sensitivity Training being offered at the Department of Social Security's Disability Division. Can you? And anyway, my spirit is slowly mending and almost back to my status-quo of loving, accepting and being OK with Willie. Why risk that?
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