I’m Erin. I’m a newly turned 30-something who grew up in a small town in southwest VA, moved away to the “big city” of Norfolk when I turned 18 and spent a decade there doing all sorts of things like………
Meeting a boy.
Getting engaged to that boy and taking cheesy pictures with some random trees in a pose that no one ever does in real life in color-coordinatedish outfits.
Marrying that boy and holding on for dear life while embracing his marriage customs.
Bearing our first child, which happened to be of the masculine variety.
Then with our degrees obtained, professions initiated, child bore, we decided to move back to the other side of the state where my family still was and an hourish from where my husband’s family ended up in North Carolina. The only logical way to do that was to buy a farm. So we did. I mean….we’re “do it up right it you’re gonna do it” people. Clearly.
Then we just trucked along for a little while. We moved here when my son, Caleb, was 3 months old. We did baby things, we did farm things, and we readjusted to the massive system and culture shock that one sustains when uprooting a life and lifestyle and starting over somewhere you’ve never been before. And during that massive readjustment period I guess the universe decided it would be a good time to have another baby (cause what the universe said and what my period tracker said were NOT the same thing) and when Caleb was 9 months old I got pregnant with his sister. Time passes and it’s the Fall of 2014. My son just went for his 15 month check-up at the pediatrician and was given the “all clear.” But I wasn’t so sure. He was at the lower limits of normal for expressive vocabulary, did a lot of running around the exam room seemingly unaware of his environment, and did a couple of play things that made one of my eyebrows raise up. But, I thought to myself “Erin- he’s 1. Barely. He’s a boy- it’s not crazy his speech is off to a slow start. This isn’t the kid exam room so of course he’s running around looking for something to entertain him. He sure was interested in the screw on the back of that electronic toy but only for a second and then used it appropriately.” That’s what I told my conscious self. And the Dr. didn’t mention anything so I decided we had passed a test. My gut was hypersensitive to the fact that I work with children that have developmental disabilities- some mild, some profound- all day long and was just looking for something to be wrong.
I should probably mention that I’m a pediatric speech pathologist. Go ODU Monarchs.
At 17 months he was still progressing. Slowly. But still progressing. I had the “A” word in the back of my head. I always had- I was just too afraid to say it out loud. I decided that his babble and word approximations sounded distorted and that I didn’t think he was hearing at 100%. Anyone but me would have said, “Oh, he’s 1. Of COURSE he can’t produce many sounds correctly.” But I knew that wasn’t it at the time- I knew he wasn’t hearing them correctly to begin with.
I should probably also mention that I spent some time on a pediatric cochlear implant team and had a specialized caseload of children with varying degrees of hearing loss before moving here.
So, when Caleb was 17 months old and 2 ear infections deep, I decided I was going to take him to the Audiologist.
But those plans got put on hold. When Caleb was 17.5 months old I got really sick. And by really sick I mean that I sustained a major medical trauma that had an 80% mortality rate while I was 8 months pregnant with his sister. Long story, 1 high-risk C-section and 1 brain surgery later, I had a daughter and a hardcore warrior scalp scar.
If you’re curious, that’s what it looks like when you’re super pregnant in the stroke recovery unit, what I imagine alien probes would resemble, and an authentic Frankenstein’s monster stitch job for you to use as Halloween inspiration.
So, while I was home for over 3 consecutive months and spending lots of time around Caleb, it became very clear to me that I was right- he wasn’t hearing everything he should be hearing- didn’t startle to environmental sounds consistently, distorted vowel productions, etc. and that he DEFINITELY needed to go to the Audiologist. It also became very clear that going to the audiologist was essentially putting a band aid on a bullet hole because it was about 2% of the problem. I knew he had Autism. I said the “A” word out loud to my husband and family. They thought I was crazy. They thought all the things I had thought 6 months earlier. I’m overly worried, I spend too much time with kids that need help, blah blah blah. So, I just sat on it a little longer.
I was right about the hearing test. So we went to the ENT and got bilateral tubes put in. I watched as they did exactly what they were supposed to do. Caleb startled when the tv turned on, localized sound sources from different rooms, etc. But he had never been deaf. The degree to which he wasn’t hearing optimally did not match the massive expressive language gap that had accrued by this point. And not to be incredibly arrogant, but he’s the son of a pediatric speech pathologist and work-from-home molecular biologist. His language environment was nothing if it wasn’t rich and he had the luxury of all day 1:1 development fostering by a work-from-home parent. Still, I sat on it.
It wasn’t long after I had gone back to work that I had a day where I just needed it to be known by someone who wasn’t me. I was on the way to a home therapy appointment and called my best friend in Alabama and told her Caleb had Autism- I just knew it. “No, Erin,” she said. “Just socialize him more.” I came back from that appointment and used my lunch break to have the same tear filled exclamations to my favorite OT and my favorite ST to which I was greeted with the same doubt and reassuring words. “Erin, we’ve seen him throughout his development- we would have told you if we saw any red flags.” I went home and told my husband that I didn’t care what anyone else said.
Over half of my caseload had Autism. I knew Autism. I knew my kid. Thus, I knew my kid had Autism.
I declared to my husband, Brian, that it was time he accepted it because it just wasn’t fair that I was the only one who knew.
I remember feeling angry that people didn’t believe me. I didn’t fault his pediatrician or the ENT for not seeing it because they spent extremely small intervals of time with him and they had no clue about me. But I didn’t understand why my friends and family didn’t see it. Surely no one could possibly think I wanted him to have Autism, could they? I felt like I was being trivialized. I felt like no one valued my professional clinical opinion. And then- I got over myself and realized it wasn’t about me it all. These people love me. They love my child. Of course they’re going to try to talk me out of it because their love for me and my family means they don’t want it to be true. They don’t want him to have something he is going to struggle with forever with because how difficult is it to see someone you love struggle????
So, we accepted Autism and we started working really hard. One day that summer I was mom-bragging to my speech therapy colleague and bestie Holly about how that weekend my daughter Ari was giving fake kisses to my son and everytime she stopped he started saying “more, more!”. I said something to the effect of “MY kid just VERBALLY requested for MORE SOCIALIZATION. TAKE THAT, AUTISM!” accompanied by a very talk-to-the-hand-cause-the-face-ain’t-listening outward palm gesture. Months later Holly made a favorite moments of 2015 list and she reminisced to that July evening and the sass at which I essentially gave a big ol’ middle finger to Autism. I hadn’t realized it was clever or that she remembered. She did and she was right. It WAS a big moment. It was the moment where I went from feeling defeated to feeling like I was going to conquer the world.
And that’s how “Take That, Autism” was born. One humid summer evening, in a moment in which the heat index gave me a little more sass than usual, the fateful words that turned into this advocacy site were declared.
May our sass and our friends carry us far, fellow Autism mamas!
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