541 days

541 days ago was March 27, 2018.

It was also the day Scarlett was first diagnosed with autism. She received that same diagnosis two additional times–and oddly enough, it never got any easier. In fact, I think it only got more difficult. Every time you go in to one of those diagnostic appointments, part of you thinks that this will be the time they tell you that they made a mistake the last time–that there’s nothing wrong with your child, that she’s just going at her own pace and that she’ll catch up when she’s ready.

For us, those words never came. For us, each of those appointments meant the grieving process started all over again (see this post if you want to know what that looked like for me, but remember to extend me some grace). During that time, I remember being so angry anytime someone publicly proclaimed to be part of the “autism is a gift” camp. I remember reading an article that punched me in the gut–an article talking two things: first, about how autism isn’t a gift or curse, but simply is; and second, about how the way a parent views their child’s autism eventually becomes the way their child views their autism. I remember reading it and thinking that while the article was logical, it wasn’t practical. I didn’t believe that I would ever get to a place where I felt that autism wasn’t a curse on my child.

For a while, I hated autism and what it does to my child. In a way, I still do–because friends, while I love my child, parenting her is hard. On days where she threw tantrums and I’ve had to try and to keep her from physically hurting herself, it was physically hard. On days where I’ve had to pin her down for EEGs, it was emotionally hard. During times where I’d spent countless hours researching to make sure I knew my rights as a parent, it was mentally hard.

But friends, something’s changed.

For the first time in 541 days, I feel like I have some control over our circumstances.

For the first time in 541 days, I feel at peace.

Do I expect to still go through periods of times where my child’s disability shakes me to my core? You bet. But I know now that those waves of grief will be followed by periods of peace.

I think that there are several things that have happened over the course of this journey that have been the catalyst for my change in mindset:

  1. Overwhelming support. Friends, I am always so incredibly humbled for the love and support that our people have always shown us whenever we’ve been brought to our knees. I’ve written a post on that as well. Thank you for being our people. From friends to family to teachers to classmates to total strangers, I could not have done this without you all.
  2. Quality therapist/educators. I wrote a letter to our therapists here, and I should write another to Scarlett’s current teacher–we have been so blessed to have had some of the most amazing humans work with our daughter. That post says it better than I could here, but I cannot stress enough the importance of therapists and teachers who are 100% invested in your child.
  3. Learning about the #actuallyautistic community. I’ve joined some groups on Facebook lately that are centered around learning about autism from people who are on the spectrum themselves. It’s helped in two ways: it’s opened my eyes to a lot of things I didn’t know–like the fact that many autistic adults prefer identity-first language (autistic) vs. person-first language (person with autism), and that many in the autistic community don’t endorse the puzzle piece. Second, in these groups, I am surrounded by autistic adults who lead totally normal lives. They are completely functional members of society. They hold jobs, start families, seek higher education–they show me what life can look like for my daughter.
  4. And finally–the thing that sent me over the edge: A picture of my daughter playing with her best friend at school. Friends, I don’t currently have words to describe how thankful I was when Scarlett’s teacher sent me that picture. She took 5 seconds out her day to send me a picture, and those 5 seconds calmed countless hours of worry, fear, and heartbreak–for me, that picture is tangible proof that my child will not struggle alone. I have always known that (see point #1), but somehow, this was different.

In conclusion, I end in the same way I’ve ended many of my posts: thank you for hanging with me, friends. Thank you for supporting me in my dark days–I hope that you stick around for the bright ones to come.

Having “the talk”.

I’ve been quiet for a while!

I wasn’t the most consistent poster to begin with, but I spent every day in April writing on my Facebook page about our girl for Autism Awareness Month–and it seemed like a posting overload! Then I got crazy busy with school and life, and now we’re here.

More than that, though, things have been pretty smooth sailing over here! We’ve seen some AMAZING progress with our girl and things are going really well overall. She’s started school and LOVES it, is talking up a 3-4 word sentence storm, and is making progress in some sensory areas.

The real point of my post, though, is to not really talk about Scarlett–but about Jaxon.

Friends, Jaxon is having a hard time lately. He loves Scarlett SO fiercely and often, she doesn’t/can’t reciprocate.

It breaks his heart.

For example, we go to bed every night and sing a song, say our prayers, and get tuck-ins. He asks every Scarlett every night to lay in bed with him while we sing, and every night she says no and gets into bed with Cora. He asked me the other night why she never wanted to lay with him and whether that meant that she didn’t love him.

This is starting to become a constant occurrence. He wants to hug her–she refuses. He wants to hold her hand–she’ll only hold Cora’s.

Sean and I haven’t really ever had the “autism” talk with our kids, it’s never really been something that’s necessary. Maybe that’s our failure as special needs parents–maybe we should’ve been talking about it all along. But J (and Cora both) have always been so little that it’s never really affected them emotionally much before now, autism has simply been part of their lives. However, J is older now, and is starting to care. And it’s a consistent care–he’s voiced concerns about why Scarlett doesn’t seem to love him several times in the last few weeks.

That being the case–how on earth do you explain this to a child? How do I explain what autism is and how it affects his sister in a way that he’ll understand? I’m open to suggestions if you have them, friends, and if not, pray for Sean and I as we determine how best to approach this conversation with sweet little son.

This way or that?

Friends, it has been a rough week.

As I shared last week, S didn’t qualify for speech services, but I had several issues with the report (including the eligibility recommendations). I had several licensed SLPs review the report and all agreed that there were several issues with the report and that S should’ve been qualified.

We went into the IEP last Thursday. The thing lasted over three hours–it was rough. So, I voiced several of my concerns in the meeting–including my disagreement with the eligibility recommendations. They (meaning the SLP) kept coming back to the fact that there weren’t two tests with scores under the 7th percentile…but she could’ve been qualified in other ways. When I explained I would’ve used a different component of the California Education Code to qualify (one score under the 7th and a qualifying language sample), she couldn’t give me a straight answer as to why she wouldn’t qualify S for services. Our program coordinator kept “encouraging” me to stop asking questions as S qualified for SpEd services under autism, just not speech, and it was clear I wasn’t going to get an acceptable answer.

I agreed to table the issue for the time being, and we finished the meeting. It was determined that S would begin school in the autism classroom and would remain there for 30 days, at which time we would reconvene, discuss her growth, and look again at appropriate placement for the upcoming school year. I have some feelings on that–we’ll get there in a different post.

After the IEP ended, I emailed the SLP to once again try and understand her recommendations. I figured that there had to be something that I simply wasn’t seeing. She then responded to me and said that she had rescored the assessment with the qualifying 5th percentile score, and S’ scores were actually even higher than what she originally reported in the IEP–pushing her further away from qualifying.

When I received that email, friends, I was furious. I had to leave class because I was so furious. You cannot do that. You cannot change scores weeks after an assessment is given. You cannot change scores after an IEP is presented. You simply cannot do it.

I filed a formal request for an independent assessment (IEE) based on the fact that I no longer trusted the integrity of the original speech report (not that I ever did). Within an hour, I received a call from the school district stating that they would grant the IEE, and asked if I would have a problem with X performing it, as X is an independent contractor. Problem with X is that she is still employed in our district.

So, here lies my dilemma. I know X. I have had very pleasant interactions with her. She comes highly recommended as she has many years of preschool experience and is competent and thorough–but is still technically contracted through the district. The people typically contacted for IEEs have been highly un-recommended by a person whose opinion I deeply respect.

So, what to do?

Take my chances with the therapist that I think could do a good job but is employed by my home district, or go with an actual independent assessor who may or may not actually do a good job?

Special needs parenting: where you constantly have to make big choices and you perpetually feel like you’re making the wrong one.

It’s exactly what I prayed for

Just a couple of quick thoughts tonight.

There has been a LOT of sass in our home lately. I am the parent of two very strong-willed, mouthy little girls.

Did you read that correctly? I said two.

Scarlett has been saying ALL THE THINGS lately, and I am over the moon. She’s slowly putting together little 2-4 word sentences, and more often than not, those sentences are dripping with snootiness.

“Go away, Mama”, she said today.

“Move it, please”.

“I don’t want toodles (noodles)”.

“Give it back”, while screaming and letting her little fists fly.

“Gone”, as she runs away.

There are times where I occasionally miss my sweet, silent baby, because nowadays, I get a lot of backtalk. “No”, is probably Scarlett’s favorite word. Full transparency, there have been times where it has frustrated me. I have never wanted to hear “Mama” from a child so badly in my life–yet, I find myself frustrated by the same word as she repeats it incessantly while crying at my leg.

In moments like that where I’m finding myself frustrated by her newfound ability to vocalize all the things, it’s so easy for me to forget that this is exactly what I prayed for. I prayed that she would be able to tell me what she wants and doesn’t want. I prayed that she would be able to communicate if she was in pain or scared. I prayed that she would be able to tell me that she loved me.

While she still can’t communicate these things perfectly, she’s light years beyond where she was six months ago–and I am so incredibly thankful for that fact. I am thankful for the incredible answers to the prayers I have prayed over the year and a half.

Now I just need to find a way to increase my patience without actually praying for it, because I’m pretty sure I am in for a long, sass-filled road.

On the eve of the EEG

Friends—keep us in your prayers tonight.

We take Scarlett up tomorrow for her EEG, and I am near-overwhelmed with hurt and worry for my girl.

Everything I read and everyone I talk to has indicated that she will have to be either sedated or restrained tomorrow—and I am struggling with both. There is no win as far as I’m concerned. My child is not an animal that needs to be medicated or restrained—she’s simply a baby who can’t understand why these things are happening to her. More upsetting still—she can’t understand why we, her parents, are allowing these things to happen to her.

I am truly struggling with the why. Why are we doing this? Why are we putting Scarlett through this, when I know that we won’t medicate at the end? I don’t have a good answer 🤷‍♀️

While Scarlett’s language has grown leaps and bounds over the last few months, I can’t know for sure that when I hold her tomorrow and tell her she’s going to be okay, that she understands me. It’s possible she does, but it’s more likely that she won’t. She will just know that she is hurting and scared and there is very little that I will be able to do to comfort her.

So again, please pray for us tomorrow. Pray for bravery and comfort for my girl as she goes through the scan. Pray for wisdom and success for her doctors and nurses as they make decisions for her care. Pray for peace and strength for me and Sean as we try and bring comfort to our girl while our hearts are breaking.

Courage, dear heart 😕

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.