When Stuff Gets Real

When you’re dealing with the uncertainty of whether or not there is something different about your child, a security blanket exists when you’re the only one who knows. When you’re the only one who thinks it, the only one who sees anything wrong. It’s conflicting, really. I remember being frustrated that no one else saw what I saw in Caleb- that no one believed me when I first started saying “hey-something is wrong.” Simultaneously yet conflictingly, there was also security in that. That maybe my maternal hypersensitivity and eternally anxious nature, was simply worried over nothing.

But then there’s a moment when it all becomes real. Every family has that moment.

You’ve read my introduction post on everything that led up to us realizing Caleb had Autism. You’ve also read about how we redefined expectations and my husband’s perspective. Now, let me tell you about the moment when we hit the point of no return.

I’ve said before that I thought Caleb had difficulties hearing…was right….but knew that was simply one piece to about a thousand piece jigsaw puzzle. I knew he had Autism. I knew there was something more going on than a mild hearing delay that tubes would take care of but man did I leave that Audiology appointment some kind of UPSET.

I prefaced the whole appointment with, “I have developmental concerns but I think there’s something not quite 100% with his hearing also and he’s had chronic ear infections.” And Caleb sat there angelically playing blocks while the audiologist put the probe in his ears to do otoacoustic emissions testing. Completely and beautifully tolerant of it all. And then we tried sound field testing…..which was a disaster. He was young and unconditioned to what he was supposed to do so that’s not really a shocker. But it was….”off” still. He wasn’t responding to much, if any visual or auditory stimuli in the environment…..he started running around…..aimlessly. And when the appointment was over the audiologist told me she thought Caleb would benefit from tubes……and that she thought I was right to pursue developmental testing for him.

That’s all she said. It was simple, short, and casual. She never said Autism. I signed some forms and left with a pit in my stomach. Here I am, the pediatric speech pathologist, who’s been trying to convince everyone in Caleb’s life that he has Autism, who knew that he needed tubes but also another decade of intensive supports…..but when someone else who wasn’t me agreed that he needed a developmental assessment, everything suddenly became real. Someone else noticed that something was wrong and after months of thinking that I would feel so much better if someone else saw what I saw….when it actually happened, I suddenly felt sucker punched.

On that drive home I cried and used my defensive “you don’t know me or my child!” voice out loud to myself. My safety net had been pulled, and everything I was worried about was no longer a worry, but now my new reality.

I also resented her a little bit for giving me that moment. I shouldn’t have- she’s fantastic! If you need an Audiologist in the Greensboro area who’s great with children, she’s who you should 100% go see. But she was part of the moment that changed things for my family and I will openly confess, that I threw the first few brochures that came from her office immediately into the trash because it stung a little bit.

So, I understand if you get defensive the first time someone brings up developmental concerns to you abut your child. I also understand if you become annoyed when they bring them up again later. But I might also guess that it’s hitting you a little close to home because maybe you’ve felt those things too. It’s hard when stuff gets real but the acceptance of an unanticipated reality with our children is one of the greatest gifts we can give them.

Love and Autism,

Erin

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