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.
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.”
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.
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.”
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 I 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?”.
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.
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 🙂
“Though she be but little, she is fierce.”