Friends, I am over November.
The first week of November, we had a stressful IFSP meeting. The second was relatively uneventful. The third was a big assessment at UC Davis (which is the main point of this post), and this week is a neurology appointment (we’ll get there in a minute).
November has kicked my rear.
So last Tuesday, I took Scarlett up to the MIND Clinic at UC Davis to have her assessed yet again. This appointment was more stressful for me than others, friends. We’ve been through the Autism assessment process before, as you know, and not that long ago. But this–seeing a new doctor, one who is unfamiliar with me, Scarlett, and our situation in general–really made me nervous. The up-half-the-night, toss-and-turn, persistent-nausea kind of nervous.
The appointment was in Sacramento at 8:15am, which meant we had to leave home at 5:30 to get there on time. Scarlett had been sick, so she was already awake when my alarm went off at 4am. You’d think that she would sleep in the car, but oh no. As is usual in snooty children, she was awake the entire trip, cried for a good thirty minutes, and then fell asleep when we were twelve minutes away. Fortunately we got there a little early so I was able to sit in the parking lot while she slept, and she got a thirty minute nap in before we had to go inside.
The clinic is really nice, y’all. The building is beautiful. It’s welcoming, lots of natural light–I was impressed. It was a welcome change from the typical doctor’s office type environment.
We met the doctor, who was lovely. She was immediately so good with S. She got down on her level, spoke so kindly, and interacted at a level that made Scarlett comfortable very quickly.
We went into the assessment room and the doctor explained what tests she’d be doing and why. First up was the ADOS, and I explained my hesitation and how Scarlett performed during the last one. Fortunately, I was able to push Scarlett’s appointment back a week, which forced them to give her the next module up (due to chronological age norms). They would also be doing a parent interview and some kind of cognitive test (the name of which I’ve already forgotten).
As she was giving the ADOS, our doctor was so good about explaining what it was she was seeing in real time, which I really appreciated. She did the parent interview, then the cognitive test. She took short breaks in between each test to score them, so I knew I was going to have those numbers before I left the appointment.
We’ve kept this fairly quiet until now, but about a month ago, Scarlett’s speech therapist told me that she thought Scarlett had a petit mal seizure during her session. I was fairly quick to blow her off, as a petit mal is easy to miss and can look like daydreaming–even though Scarlett isn’t a daydreamer. I made her an appointment with her doctor just in case, but wasn’t overly concerned. When I took her in to the doctor, he also said he wasn’t overly concerned but to call him if it happened again and he’d put a referral through to a neurologist. Unfortunately, a second and third therapist said they saw the same kind of episode, and so the referral was sent out. Even then, neither Sean nor I had ever seen one, we were just going off the observations of the therapists.
Friends, I could have gone my entire life without seeing my child have a seizure and died a happy mama. Unfortunately that wasn’t meant to be my lot in life, and I saw one during the ADOS. The doctor was singing, “You Are My Sunshine” (one of S’ favorite songs) while S was banging cars on the table and trying to sing along. All of a sudden, she stopped banging the car, got very still, and stared blankly at the wall for about 20 seconds. When the doctor saw the change, she kept singing, but snapped her fingers in front of Scarlett’s eyes and shook her shoulder with no response. After a short time Scarlett blinked, shook her head as if to clear her thoughts, and resumed banging the cars. The doctor was alarmed and I explained that she was already scheduled to see a neurologist for suspected petit mals.
In a weird way, I’m glad I saw it, because at least now I can go to the neurologist appointment and be able to say I’ve seen one with my own eyes. On the other hand, it was terrifying to watch and I’m pretty sure that I almost burst into tears in the middle of the assessment. I didn’t, but it did take a minute for me to really move on from what I saw.
The appointment came to a close and the doctor told me that Scarlett did meet the criteria for low-moderate Autism, which is what we were told at UCSF. She also said that while S met the criteria today, she likely wouldn’t have met them had we brought her in six months from now–something called “Autism Spectrum Disorder in remission”. It’s a thing, apparently, where a child is diagnosed with Autism, receives early intervention services, and the services are so successful that the child no longer meets Autism diagnosis criteria when reassessed later on. She said that she believes that’s what is happening with S because she barely met the criteria in one of the DSM V categories and is aware of the intensity and duration of Scarlett’s early intervention services.
Friends, I am beyond mixed on this.
I am “happy” that Scarlett got a formal diagnosis from a second site. I was so worried that having a negative ADOS would complicate things down the road. I am “happy” that we have a diagnosis that is now supported by the ADOS.
But friends, lately I haven’t been able to shake the feeling that I am fighting for the wrong thing.
Do I think she has Autism? I truly don’t know. I can’t shake the feeling that this is Lyme, and that I’m fighting for the wrong diagnosis. I was content for a while to put it on the back burner since I couldn’t treat it, but now that S is starting to have seizures, I’m wondering if I made a mistake doing that. I don’t regret our path thus far because it has given us access to services that have helped Scarlett immensely over the last year, but I can’t help but feel like I’m just treating the symptoms and not the underlying cause. At the same time, I have a persistent, nagging, horrible feeling that I have allowed a disease to run unchecked and torment my child and her development over the last year.
Maybe I’m just reaching here and am falling back into the denial phase of the stages of grief, and maybe I’m not. What I do know is that I’m struggling with whether or not I’m doing and fighting for the right things, and I’d appreciate all the thoughts and prayers you can send me.
To close: I’ve said this a million times, but I am going to say it again–I have been (and continue to be) so thankful and overwhelmed by the love and support we have been shown in this journey. It seems that every few days another person is showing up in my corner to love on and encourage me, and I am so grateful for this. I’d love to sit here and name them all, but I don’t think they’d want that–those are the kinds of people I am blessed with. People who go out of their way to make me feel supported but want none of the “glory” and recognition that goes along with it. Friends, I love you all and am so thankful to have you along on this ride with me.