Can November just end already?

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.

So.

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.

What a week.

To begin, thank you all for the sweet words of support and the thoughts and prayers you’ve showered us with over the last week. I needed a few days to process the news we were given before I was ready to share it, and am thankful that we were not pressured to share before we were ready.

When we went up for the ADOS at the beginning of the month, I knew as soon as they started the appointment that she would “pass”. The ADOS tested all of Scarlett’s strengths: playing with bubbles, baby dolls, and cars. All three of those are things she has been taught how to play with throughout countless hours of therapy. With NT kids, you take that for granted, I think (at least I did)–it’s odd to think that playing with toys is a skill that sometimes needs to be taught.

Anyway, like I said, I knew S would pass the ADOS within a few minutes of the thing starting. Not only did it test her strengths, but it also tested her most comfortable setting–a quiet, therapy-like condition with one adult focusing their attention on her. She breezed through their tasks.

By the time we got to the end, they decided to give a speech evaluation. Not knowing what I do, the lady proceeded to give my child single word vocabulary assessments (the E/ROWPVT for my speech people) and claimed that “it would give us good insight into her language abilities”. Insert world’s largest eye roll here. She performed better in receptive language than expressive, which is opposite of her assessment results from another test a few months ago (the PLS). I asked why that would be, to which they responded, “well, we don’t know how she did yet, we haven’t scored the assessment to know for sure”. Insert second eye roll.

After the speech assessment, the clinical psychologist came into the room (she was behind the glass observing) and said we were good to go. I think my mouth must’ve dropped, because she looked at me funny, and I had to ask her why she wasn’t going to do a parent interview. She said that she was just planning on using the parent interview performed 6.5 MONTHS prior. Bear in mind, my child is 2.5…that is a LOT of time for growth, it’s insane that she even suggested it. So, I pretty much forced her to interview me, and I told them that Scarlett was going to pass the test because it wasn’t indicative of her life on a daily level. How she performed in that controlled environment is not how she performs on a day-to-day basis. They nodded their heads and listened to everything I had to say, and told us that they would send their findings to Scarlett’s doctor, who would then make the final diagnosis determination.

Let me now say that my worst nightmare was that the ADOS would not indicate Autism but that her doctor would retain the ASD diagnosis.

We started our video appointment on Tuesday and the doctor asked us general questions. After twenty minutes or so, he started to pack up his stuff and asked if we had any other questions.

So I go, “um…yeah, we were supposed to go over Scarlett’s ADOS results. I’m kind of freaking out about them”.

He looked super confused, and then proceeded to tell us that he was not informed that he was supposed to present the ADOS results. He started to scan the report and told us that it would be unfair for him to present it without reviewing it, and that he would review it over his lunch and call us back in a few hours.

Friends, I was not pleased. We had scheduled the appointment at a time when both Sean and I could be present, and now Sean would not be able to be there when the doctor called back.

Fortunately, he called us back about fifteen minutes later. Unfortunately, he called back with my worst case scenario.

He told us that the results of the ADOS do not indicate ASD. I told him that I knew they wouldn’t, and asked if we no longer had an ASD diagnosis, because I was worried about what that would do to her eligibility for services once she hits 3. He told me that he absolutely would not be stripping the diagnosis, because he didn’t feel like the ADOS (in our case) was an accurate representation of the whole child. He said that what was especially frustrating was that all of the recommendations given were the standard recommendations given to children with Autism. He then proceeded to tell us that he wasn’t going to release the report to us yet, because he wanted to go over it with the psychologist and make sure that it was worded in a way that would not hurt us when it came to eligibility reviews (or whatever else) moving forward.

TL; DR: we now have a clinical Autism diagnosis without the support of the ADOS.

Friends, I have struggled hard over the last few days with this. Obviously I do not want my child to have Autism–in some ways, I am still in denial about that. That said, she is not “normal”. Therapy has made her much more passable, but she is not “normal” in any sense of the word. Just because intense therapy has made her normal-passing, that does make her normal.

I don’t know what will happen in the future. Scarlett has to be reassessed in a few weeks to determine her eligibility for services from the school district, and I am worried they will determine that she is “normal enough” to not need services. The thought makes me want to throw up. If we happen to get a doctor at the MIND Institute who places more weight on the ADOS than the whole child, losing services is a very real possibility.

Please keep us in your prayers. I have a feeling we don’t have a smooth journey ahead of us over the next few months, and while I will do everything I have to do to ensure that my child receives every service she needs, I am feeling pretty out of fight lately. This has been a tiring journey and I am more than ready for something to go smoothly. Pray for us as we go up in a few weeks for yet another assessment, they are never easy on the spirit.

As I said earlier, Sean and I are so thankful for the love and support we have received over this past week. Your kind thoughts, words, and prayers have been such a source of encouragement, and I am endlessly thankful for each and every one of you.

Courage, dear heart.