Fighting with Tears in Our Eyes

When working with professionals, I approach them assuming they want what is best for my family and me, since this has usually been the case. Generally, people are happy to do what they can to help. Special needs administrators, however, seem to be the glaring exception to this rule.

Let me be clear; I am not speaking about those who provide direct services. Nearly every therapist I have encountered has patience, love, skill and devotion. But the administrators, the gatekeepers to those very services…not so much.

When my daughter was in the public system, I had administrators lie, trick, and intimidate me. Having grown up watching my parents fight for adequate education for my brother with Downs Syndrome, I knew I had to battle for every service to which my daughter was federally entitled.

I’m pretty strong. Standing up for my child was not difficult. To do so while having to face the reality of her limitations was much more challenging.

Each time we met with administrators, they fiercely guarded the services they were willing to provide. At the same time, they tossed around terms regarding my daughter; “M.R.” (Mentally Retarded), “delayed,” “cognitive deficiency,” “congenital defect,” “failing,” “different.” Hearing these words applied to my gentle, sweet, loving little girl was painful. And yet, I couldn’t pause to feel sad. I had to push for her rights. While trying to think how to best negotiate for her federally protected benefits, numbers and reports were floated in front of me showing me all the ways in which my daughter was behind her peers.

I had to fight with tears in my eyes.

I still have to fight for her, but my eyes are dry. As this smart, vivacious, kind, and funny little girl has grown, her special needs have become milder and milder. We are incredibly fortunate.

I realize just how fortunate when I talk to friends of mine who are now going through this with their older children. Often, special needs only become more pronounced as children grow. I listen as they recount their fights with tears in their eyes.

And here is what I wonder; who provides services for them? At the end of the day; after leaving work for another meeting, evaluation, or therapy session; after wrestling with the emotional fallout from their child with special needs; after giving attention to their other children; after cleaning up and getting the laundry put away; after helping finish school projects, making work calls, returning email; after mourning the loss of their great hopes for their precious child; after quieting their fears about how their child will survive in our world; after strategizing about the next I.E.P. (individual education program) meeting; after all of this, who is there for them? Who helps replenish these parents when they fall into bed completely spent and exhausted just from trying to get their family through each day?

It is hard enough coming to terms with a child’s special needs. Having to fight for the services guaranteed them by federal law just makes everything that much more difficult. It forces parents to fight with tears in their eyes.

My parents still have to fight with tears in their eyes; every day of their lives devoted to my brother’s health, living arrangement, job security. My friends with autistic children fight with tears in their eyes; never knowing day-to-day what will trip up their carefully crafted plan to manage their child’s unpredictable reactions. My friends just learning of their children’s diagnosis have to fight with tears in their eyes; simultaneously trying to understand how their child learns while figuring out a system less than forthcoming with adequate educational opportunities.

Who is there for them?

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