Nothing But Invisibility

When Callie was diagnosed with autism, I hung on every word of the developmental pediatrician. She was a licensed professional and I took that to mean she was qualified to tell me what was going on with my son. She obviously had education, as well as, experience to back up the degrees & certifications that I admired hanging on her wall. I assumed her statements were factual. Autism was a stranger to me. ADHD & Down Syndrome….I had heard of but meeting autism’s acquaintance was so foreign to me that I had to ask how to spell its name. So anything this doctor told me, I pretty much absorbed wholeheartedly. At the time, she could have told me that Callie would never speak, and quite honestly I would have believed her. I would have been devastated & beyond confused but at least I would have known the problem and I would have known the prognosis. Thank goodness that was not what she delivered. . . . .not to say autism was not a blow to the chest when I heard the word leave her mouth, but at least the sentences following was somewhat encouraging.
I’m trying to convey that sometimes as parents, we’re not really seen or heard. Because a diagnosis may be unknown to you, we tend to accept what is handed to us, entrusting our feelings to someone we believe knows better than we do. And at times, our innocence & quickness to trust without inquiry, causes many professionals to not bother to see or hear our hearts. Our concerns are transformed to blah, blah, blah in their ears. Blank stares, twirling of the thumbs, slumping back in their chair as if you had just said something off the wall that it’s not worth repeating, and my personal favorite is when you’re told how many years of experience they have. . .as if that justifies them disregarding our worries altogether or considering it too minute to discuss. You already feel like the disadvantage in the room, and how awesome would it be if a hole in the floor would miraculously appear for you to crawl into, so your ignorance won’t be on display any longer.

Oftentimes, IEP meetings were like that for me. I really felt out of my element. Sitting in front of professionals who seemingly was more educated than me was intimidating. A comment on my part was frowned upon as nonsense, mindless and misinformed. After several meetings, I learned that if you’re unfamiliar with your child’s rights, as well as, your own, there’s a chance you may get taken advantage of. They may only see you as emotionally invested & fragile parents whose child is just another name in the special educational system. . .a statistic. . .a deficit. . .not a real person. The temperature in the room is a thunderstorm of doom & gloom. Lightning strikes every effort you may make in helping your child achieve, and progress & accomplishments are hidden behind the cloud of “goals not yet mastered.” Eloquently informed, on many of occasions, of how my son was boxed up in challenges, I watched the focus shift from strengths & abilities to weaknesses & a slim outcome. Consequently, I would stand amazed, reliving the diagnosis, traumatized from the lack of knowledge of the special ed jargon disclosed and pained from being punished for trying. Was this how my son was portrayed? Was this how they saw me? Or would it be easier to talk to an empty chair, labeled “parent” while silence filled the air every time a response was needed?
Not all schools are under the umbrella of disrespect and apathy. There are schools that do embrace the child for who they are, as well as, comfort the parents’ fears and welcome their support. But for the institutions that think we don’t know any better, let’s be visible. Surprise the attendees with a renewed advocacy. Replace ignorance with groundwork. . .preparation. Slide fear behind confidence. And create such an atmosphere, that who you’re convening in that room for, is never in question. . .and equal respect stands front & center.

Thanks for listening!

Portia

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