Ari

If you checked in yesterday, you know I introduced you to the awesome Ms. Holly. You can get a little background on my husband and I here. And of course, you get to read about Caleb alllll the time. (Especially if you guys are friends with me on my personal page on Facebook- ya’ll know I have an incessant love for my kids and my cows).

But there’s one more important person I’d like to tell you about.

Caleb’s little sister, Ari.

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Ari just turned 2 a few weeks ago. She’s a fiery red-head who loves animals, playing dress-up, building blocks, and Disney princesses. Her favorite food is macaroni and cheese and her favorite place in the entire world is at gymnastics class, which she goes to every week. A typical 2-year-old little girl.

Recently though, I had it in my head that there may be more to know about her. When I first got pregnant with Ari I wasn’t worried about her potential future development because Caleb was only 9 months old at the time and I hadn’t had concerns about Autism with him yet. Later into my pregnancy with her, those concerns about Caleb came through the back of my mind but still weren’t solidified even when she was born when Caleb was 18-months-old. When Ari was a few months old I realized exactly what we were working with and even though I knew having a sibling with Autism put her at a greater chance of having it also, I thought “she’s a girl- the incidence rate is lower in girls so I bet I won’t have to worry about Autism with her.”

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Naivety at it’s finest. Sometimes when we’re worried about something we’ll talk ourselves into things.

But I didn’t worry for a looonnggg time about her. I remember sending videos of her to people with the most beautiful and hysterical reciprocal laugh while she played in the bathtub and at 6-months old imitating some awesome consonant-vowel-consonant -vowel sound combination. So, I was certain it wasn’t ever going to be something I would have to worry about.

At her 18-month check up, however, I asked her pediatrician if he saw any signs and symptoms of Autism with her. The thing with Caleb is that his development is disordered. His expressive and receptive language skills are developing in an atypical way. And while Ari wasn’t necessarily where I expected her to be, she always ended up doing the things she was supposed to be doing, it just took her more time. She seemed to be operating more on a delay rather than a disorder. Still, the knee-jerk reaction to call it Autism because her brother had Autism was hard to fight. Her pediatrician said he didn’t see any signs and symptoms of Autism in her. He even said, “now that you bring it up and I’m looking for it in her, I still don’t see it.” Her pediatrician is amazing. We love him. But a mama with a worry is a fury to not be stopped.

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So I asked for a referral to a Developmental Pediatrician (after researching the best one I could find across two states) anyways.

I took her into North Carolina to see a Pediatric Developmental Psychologist who would test her over the course of 3 separate sessions so that whatever his conclusion ultimately was going to be, we would be able to have good faith that it was the right one.

At this point I had already decided that she probably had Autism. With her brother, once the conclusion was reached, there was never any uncertainty. If it looks like a duck, walks like a duck, and talks (or doesn’t talk) like a duck, then the duck has Autism. I will admit though that there was always enough of a sliver of doubt with Ari that I was only comfortable telling my closest of confidants I was taking her.

But that didn’t last long because in the spirit of awareness, I posted on Facebook what my concerns were and that I was taking her because I decided I had lived too much denial and seen too much denial in other people for this not to have the potential to help someone who may be going through the same thing. I don’t know if it ever did, but I hope so.

Back to her evaluation. I filled out all the preliminary paperwork as one would if they had already decided on a diagnosis (and also wrote a 3-page developmental addendum cause I’m a crazy lady) and sent it all in. We went to the first two appointments which were intake, “get-to-know-you”, and general developmental testing appointments. Then it came time for that third and final testing appointment. That was the day Ari was going to be given an Autism-specific developmental test. It was Halloween Day. I remember thinking, “today is going to be a day of tricks, not treats.”

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The morning before I left for that appointment was a hard morning for me. With Caleb, I got to get to the point of knowing and accepting Autism at my own pace because I realized it on my own. I had control because led everyone else to enlightenment about him, nobody else led me. But now I was at someone else’s mercy. All I could do was sit and wait and let someone else tell me what was going to happen. Despite whatever confidence I may have displayed about it all in person or online, that morning I sent Ms. Holly the most worried-mama texts I’ve ever sent because no matter who you are, it’s a lot to take in.

So, with a nervous pit in my stomach, we drove to North Carolina at 7 in the morning. A few hours later, testing was complete, and I asked the psychologist his preliminary thoughts on where we stood after 9 scheduled hours of appointments with him. And do you know what he said?

“She doesn’t meet the diagnostic criterion for Autism. After formal and informal assessment, my impression is that she is not on the spectrum.”

Out of all the things I prepared for, do you know that I didn’t prepare for “what if she doesn’t have Autism?”.

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So, I left feeling relieved. I felt excited, I felt at peace, but most of all- I felt so glad that we had made the decision to go to the doctor. Because do you know what would have felt worse than the worry I felt until her appointments concluded? The feeling of having ignored my gut and the guilt of having buried my head in the sand because I was embarrassed, worried, or scared of the “what-if’s?”.

I promise you all- I get it. I have a child who I was worried had Autism and did. I also have a child who I was worried had Autism and didn’t. I’ve ridden that roller coaster of emotions on loop. What I hope I accomplish by sharing our journey, however, is that you find a way not to let the worry part of things paralyze you. I’m not an Autism expert and I’m not a parenting expert. But I am available. To anyone who ever needs me to be whether it’s in a personal or professional capacity. I also have a wine fridge and a coffee pot so if needed, we can settle in and make a day of it.

Now that all of those feelings have been properly processed, I find myself having confidence in the opinions of her pediatrician and developmental expert. While she does have a language delay, I see that she imitates so much more with so much less effort than her brother. And she spontaneously has productions that are beyond where he is presently. Her sensory system is integrated, there’s an absence of stereotypical behaviors, she doesn’t have to be taught social games, she reads and reacts to our tone and facial expressions so well (which I love even when it results in a pouty face and crying breakdown like she lost her best friend when I tell her not to do something), she points and tries to comments, sings, and understands so well and so much.

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In an effort to be fully transparent, I will tell you that she did get a diagnostic code for a general neurodevelopmental delay and that it was brought to my attention that we can not conclusively rule out that prenatal events that happened to me did or did not have a developmental impact on her. One may reason that when a pregnant mother has focal seizures, grand mal seizures, a subarachnoid brain hemorrhage and hemorrhagic stroke, that the consequences may extend beyond herself. Honestly, I don’t really know. For someone who needs to know exactly what I’m working with at pretty much all times, I have done a surprisingly small amount of research into this- mainly I think, because at this point, I’m just thankful we’re both here.

So, I hope you guys don’t mind reading on how Ari’s progressing in addition to her brother. I’m pretty fond of her and think you guys will be too 🙂

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“Though she be but little, she is fierce.”

– Shakespeare 

How We Got Here

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.

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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.

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Marrying that boy and holding on for dear life while embracing his marriage customs.

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Bearing our first child, which happened to be of the masculine variety.

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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.

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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.

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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.

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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.

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May our sass and our friends carry us far, fellow Autism mamas!

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