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.

After the diagnosis

Confession: I’ve had this post sitting in my drafts folder for months. I’ve added to it, deleted from it, prayed over whether I should post it– and now, here we are.

Today, we are going to talk about a very real component of the Autism parenting journey: the stages of grief after your child’s diagnosis.

Go with me here for a minute– we’ll come full circle, I promise. Next month, Scarlett has an appointment to complete the ADOS, one of the formal Autism diagnostic tests. We’ve pretty much been given a clinical diagnosis already (when you hear hoofbeats, think horse kind of thing), but they wanted to wait a little while longer for the ADOS.

I’ve lived this blog post already, and to be honest, I’m still living it. But after her appointment next month, my guess is that I’ll start this cycle again. Apparently, it’s common for parents of newly diagnosed children to go through these stages– a fact that made me feel a lot less crazy after I figured that out. What I was feeling and what I was experiencing wasn’t unique to me– it was totally normal.

There’s 5-7 stages of grief, depending on what you’re reading. For me, they didn’t necessarily come in order, I found myself bouncing between stages fairly often, and there have been times where I’ve experienced several stages at once.

A friend of mine has a child recently diagnosed on the spectrum, and I debated whether or not to disclose to her that this was my experience. It’s truly a vulnerable thing to admit, but I would’ve given my right leg for someone to have told me upfront that this was what I should expect after Scarlett’s diagnosis. I’m sure there’s some out there who can say that this was not their experience (and major kudos to them)– but it’s common enough that I think it needs to be talked about. People are becoming more accepting of Autistic children and the Autism community in general (as they should– neurodiversity is a beautiful thing), but I’ve found that there is very little information out there in terms of understanding the journey of a parent of a child with Autism– hence this blog. If I can make even one other parent feel a little less crazy in their journey or help even one other human give support to a parent of a child with Autism, then my vulnerability will all have been worth it (and trust me friends, this is WAY out of my comfort zone).

Please be kind to me. I’m about to admit a lot of things I’m not terribly proud of, but I think are SO important to add to the Autism diagnosis conversation, which is why I’m about to share a lot of things I’d rather not. When we received Scarlett’s diagnosis, I wasn’t given a pamphlet on what I should expect in the upcoming weeks and months. I wasn’t told I should seek out the support of the Autism parenting community, who could’ve told me immediately that I was about to experience legitimate grief– and a lot of it.

So without further ado, the stages of grief as I experienced them.

Denial

When we first started EI in Denver, Scarlett was about 13 months. Our behavioral therapist there told us that at that point, she did not feel like S fell onto the Autism spectrum due to her social abilities. And friends, I clung to that. At the time, my aunt sent me a well-meaning text offering Autism as a possibility of something to look into in the future, and I admit that I blew her off (sorry, Aunt Jen!), because that would not be my child. So even when we got to California and it was brought up as a legitimate possibility in Scarlett’s very first therapy session, I again immediately dismissed it as an option. There was no way that this was going to be my child, and no way that this would be my life. But as it continued to be brought up more and more and diagnostic appointments began to be scheduled, I began to bargain.

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Bargaining

In the days before Scarlett’s diagnostic appointment, I did a lot of praying. I prayed that if God would do X, then I would do X. If God made my child “normal”, I would be a better mom. I’d take my kids to the park more and spend more time in the moment. If God made my child “normal”, I’d be a better wife. I’d be a better encourager to my husband and do more to build him up. If God made my child “normal”, I’d be a better Christian. I’d study my bible more often and be a part of all the works I could. I realize that none of this was rational, but there is a lot of irrationality that happens in a mom-brain when you feel like something is happening to your child that you can’t control.

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Anger

Fortunately, this stage was brief– because for me, it was among the most difficult. Thankfully, it only lasted for only a few days after her appointment. Friends, I was so angry in the days following Scarlett’s diagnosis that I think I’ll need to spend the rest of my life praying for forgiveness for how I acted. I was angry with everyone: at God, at my husband, at my kids, at the guy that cut me off on the road– I couldn’t escape it. Everything made me fly off the handle. At one point, I remember my jaw physically aching because I was constantly clenching my teeth in anger.

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Denial

See, I told you I moved back and forth! After my few rage-y days, I settled back into denial. Not necessarily denial that there was something wrong, but denial of the diagnosis itself. To this day, I’m still not ready to rule out the possibility of Lyme. We weren’t able to treat it when it was first diagnosed, so how much of this (if any) is Lyme, and how much of this is Autism? I don’t know that that’s something I’ll ever know the answer to. But again, here is visible proof of my denial. I am still slightly in denial that this could be Autism and Autism only.

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Depression

After some more time in the land of denial, I hit depression, and I hit it hard. I have spent quite a bit of time in this stage. I’ve struggled with depression off and on since I was 19, and by now, I’ve gotten pretty good at managing it (aka hiding it) whenever it does pop up. This time, though, I couldn’t shake it. I spent so much time questioning God, because I didn’t understand why he would do this to me. I’d been through enough in my lifetime, why this? Years spent battling depression, abusive relationships, sexual assault, self-harm– all of these things were apparently not enough. I questioned God and, after making me endure all of that, why he would now add a special needs child to the mix*.

There was a day where I remember walking with my kids, and Jaxon went to try and hold Scarlett’s hand. My boy has a BIG heart, and he absolutely adores his sister. But she pulled her hand away from him, like she often did at the time (she’s getting better about it now). Friends, I will tell you that trying to console my sobbing four year old who was convinced that his sister did not love him was among the most difficult moments in this Autism journey thus far. I was absolutely heartbroken and felt like I would never escape that feeling. I was so horribly sad that it was difficult to find the energy to get up and function. My house was a mess, laundry piles were everywhere, I felt like canceling all of Scarlett’s therapy appointments and never picking them up again–those feelings of sadness and apathy lasted way longer than it should have. It finally got to a point that I couldn’t manage the sadness anymore…it was affecting every facet of my life.

When I realized that, I went to the doctor and was prescribed medication. My husband, my kids, my parents, my brothers, and my friends deserved more than what I was giving them. I deserved more than what I was able to give myself. I am brave enough to admit that this is what I need right now to keep myself in the right headspace–let’s be the generation to end the stigma of mental health (especially within the religious community**), shall we?

*Friends, I’d like to add this here: God didn’t “do” any of this to me– that’s not how God works. He allowed me to go through it, sure, but he didn’t “do” any of it to me. Shoot me a message if you want to talk God– I’m all about that life.

**I’ve seen/read/heard a few Christ-professing people say that those struggling with anxiety, depression, suicidal tendencies, etc. just have a lack of faith. If only they had more faith, there would be no place for these feelings. If they prayed more, all of those feelings would go away. Friends, no. That is so not a thing, and while I think that the current trend is an understanding of that fact, we still have some room to grow.

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And now I stray slightly. The next stage should be acceptance, but I’m not there yet. So, I’m going to make up my own stage:

Tolerance

I wish that I could say that I am now at peace with Scarlett’s diagnosis, five months after receiving it. But truth is, I’m not. “They” (the community of Autism parents who are further along in their journeys) say that that day will come at some point, and there will only be brief moments (or periods) of sadness. But for now, I am not there.

For now, I tolerate Scarlett’s diagnosis. I tolerate the therapy that comes with it. I tolerate the disruption that therapy schedules cause our family. I tolerate the hoops I have to jump through to get my daughter the services she needs to thrive. In short, I tolerate Autism. There is no alternative.

Regardless of my current tolerance, I’m in a happier (and healthier) place mentally, I am striving once more to be content in all circumstances, and I am finding the joy in life again. I know that regardless of what label or diagnosis is placed on her, I have a beautiful little girl to do life with. She is smart. She is funny. She is tenacious. She is brave. She is shy. She is fierce. She is stubborn. She is snuggly. She is loved. She is everything I prayed she would be and so much more.

An Autism diagnosis is not the end of anything. Have I grieved (and continue to grieve, at times) the loss of the life I thought I would have? Have I grieved the loss of the simplicity of life before Autism? Sure, but isn’t that life? Life is constantly changing and evolving, and we have to adapt to whatever comes our way. I may have had to change my way of thinking (which was incredibly difficult), but I have come to the conclusion that no matter what comes along, we will be okay. There has already been impossibly difficult days, and I can guarantee there will be more– but I know that our family will be okay. We will figure out a way to make it okay, because we have no other choice. We are parents, that’s part of our job.

All that said– God’s plan is better than mine. It has always been better than mine. As I said earlier, I know that no matter what comes next, we will be okay. Sean and I will be okay, and Scarlett will be okay. And on the days where we are not okay, I know that we are surrounded by people who are ready to help bear our burdens.

Another friend of mine posted a quote by Philip Yancey (no lie–no idea who that is) on Instagram that happened to be exactly what I needed to read on the day she posted it, “faith is trusting in advance what will only make sense in reverse”. I do not understand why this happened to my child. I do not know why Autism rates are on the rise. I do not know what life holds for me, for my family, for my child–but it will make sense some day. Whether the answer is something as personal as increasing my faith in God’s plan or something more than that, there will be a day where I look back and understand this better than I do right now.

To come full circle, I write all of this because I think it’s SO important for people to realize that parents are so very fragile after their child’s Autism diagnosis. Being aware of how deeply a parent may be affected is the first step in finding the right words to say after a parent makes their child’s diagnosis public. When we made Scarlett’s diagnosis public, some of the responses I received blew my mind–and not in a good way. Awareness is the first step to change, and changing how we approach, support, educate, and encourage parents of Autistic children (and their support networks) is SO necessary.

To my child’s therapists

To all of the doctors and therapists who have worked with my daughter in the past, and especially to those who are currently working with her:

Thank you. Thank you for being constant sources of support and information for me, and for working so hard to teach my daughter the skills she needs to be successful.

As an SLP student (and I’m sure this is standard among the other therapies as well), they teach you that you will not only teach a child in therapy, but will also become a counselor for parents. I am thankful that you have been taught those skills. You, my daughter’s therapists, have laughed with me, you have celebrated Scarlett’s victories with me, and at times, have comforted and even cried with me.

You have called and sent me texts asking how Scarlett is doing and have asked if there’s anything I need from you to help her succeed at home. You have helped me navigate the flawed system that is early childhood intervention, given me advice for how to receive the best care for my daughter, and I cannot thank you enough for that assistance– there are times where I would have been completely under water without it.

Thank you for being constant. There are days where you knock on our door or I walk through yours and I dread seeing your face. It has nothing to do with you personally, you are wonderful– but therapy takes a toll, even when it is going well. I know that there are days where Scarlett can be difficult, and I know there are times where she must frustrate you.

Even more than that, I know that I cannot be the easiest mama to deal with– I know too much. I am not the type of mother to sit back and watch how things play out or to allow complacency where my child is concerned. I can be emotional– I know this. I can get angry when things my child needs and is entitled to are denied, even when that is not your fault. I try my best not to take that out on you–I know you have no control. But I know you can sense my frustration. I can get upset and overwhelmed, because as I said, therapy is taxing. There are times where you offer a therapy suggestion and I refuse to do it, because even if it may be beneficial, I won’t put my child through it. But through all of this, you show up. Thank you for your consistency.

It’s a weird thing to be a parent of a special needs child. I am my child’s mother and I know her better than any other human being on the planet– but there are things that you can do for her that I cannot. There are things you can teach her that I cannot. That is a strange thing for a parent to acknowledge and accept.

It is strange to know that in some ways, you hold my daughter’s fate in your hands. Your choice of therapy strategies and your skill at executing them are a lot of what determines how well my daughter functions– whether that be socially, physically, or mentally. Sure, there are skills that my daughter would accomplish with or without your assistance– but there are also skills that she may not. And even if she did acquire those skills on her own, she may not execute them well.

I truly hope that this responsibility is something that you recognize and take seriously. Second only to my husband, my children are the most important humans in my life. I would do anything for them. But this is not something that I am capable of doing, and as I said, that is hard for a Type A mama to accept. I cannot force you to take that responsibility seriously, as much as I wish that I could. I know that all of you are exceptional human beings, or else you would not be doing the job that you do. It truly takes a special human to work with special needs children, to do it well, and to do it with love and compassion.

But while you’re working with my girl, I need to be confident that you are loving and teaching my girl to the very best of your ability. For however long you are with her, I am forced to trust that you have her best interests at heart, and want her to succeed as much as I would. I hope that on the days where your job seems mundane and repetitive, you remember that your job is literally life-changing for my child. You are the humans who have taught her how to play and learn to walk. You are the humans who are helping her talk, and to successfully and fearlessly navigate the world around her. You are the people who are teaching me the skills I need to be a better, more understanding parent.

Again, I know you know this. I know that you see the value in what it is you do, or you would not have chosen to work in these fields and with the children in them. But I just want to take a second to reinforce that again for you:

What you do matters.

Through various therapies, my child has learned how to play with toys, how to walk, how to jump, how to interact more comfortably with people, and even how to eat and drink. All of these things are things that should not take an abnormal amount of focused effort, but for my child, they have. All of these things have been mountains that my child needed to climb– thank you for giving her the tools she needed to scale them. Thank you for giving me the tools I needed to assist her.

I close with this: for as difficult as this journey has been and even on the days where I have hated your therapy strategies (and believe me, there have been many days where I have), I appreciate the work that you do and your willingness to do it. I pray and give thanks for you constantly. Keep up your good (and important) work.

Sincerely,

Scarlett’s mama

Parenting a speech-delayed child

Friends, throughout the course of my life, I have engaged with countless children. I’ve taught Sunday School and Vacation Bible School classes since I was 17. I’ve worked in a preschool. I’ve babysat the littles of friends and family. I have three children of my own. All that said, I can honestly say that I have never met a child in my life that talks as much as my son, Jaxon.

The kid is rarely silent.

He talks about movies, Minecraft, outer space, God, how fast he is, asks how old _______ will be when he is _______, and tells me he loves me five million times a day. Nothing is off limits for this boy once he gets comfortable with you, and he talks about something nonstop. Most of the time it doesn’t bother me, but sometimes it’s absolutely exhausting (especially when I’m in the car. I cannot handle it in the car–that’s sacred time for me 😂).

To have a child like Jaxon makes it especially difficult to have a child like Scarlett. Scarlett is finally able to communicate slightly…and I mean slightly. She can answer yes or no questions most of the time, but there are times where I ask her something that I know the answer to, and she gives me the opposite response. So her yes/no is fairly accurate, but not bulletproof. She also can tell me she wants to sing, “If You’re Happy and You Know It”, by smiling, pointing at her dimples, and dancing (and friends, I die when she does it, it’s the cutest thing ever). Anything outside of these two things are basically done on a case-by-case basis, through whatever means necessary.

She has a decent number of words (about 15), but only a few are functional (“no” and “stop”, for example). Most of her vocabulary consists of exclamations (“look”, “oh no!”, “uh-oh”, etc), and while so cute to hear, are not terribly helpful for functional communication.

If you go to school for speech pathology, early childhood education, or some other related field, they teach you that at two, a child should have a decently large vocabulary, be learning several new words a day, attempting to imitate a word if prompted, and starting to combine 2-word sentences. Scarlett does none of these, and that is hard for me. It is hard for me to know that Scarlett is severely delayed in an area that is so important in every aspect of life.

She had a speech evaluation done a few weeks ago, and her deficit was made quite clear. I’ve said it before, but you can know that your child is behind without actually understanding just how much. When you go in for an evaluation and you get the report, it’s right there in black and white. There is no more guessing or knowing-whilst-not-actually-knowing. Scarlett’s total language score sat somewhere in the 12-16 month range (the exact score given in her report was not correct so I don’t have the exact age, we’re waiting for a revised report). More upsetting than that, though, (since I already had a ballpark idea of that due to her past HELP assessments) was her auditory comprehension score– or, her ability to understand what people say. Scarlett scored at the level of an 8-month old.

That, friends, was rough. It’s been difficult for me to accept the fact that there are a lot of things that I say to my child that she likely doesn’t understand.

Does she understand when I tell her she’s okay after she falls and gets hurt? Does she understand me when I leave her somewhere safe, and tell her I’ll be back soon? Does she understand when she’s scared, and I tell her it’s going to be okay? Does she understand me when I tell her I love her?

Friends, I know that there are non-vocal ways to relay all of the scenarios I listed above– but the fact that I am (for now) unable to reassure my child verbally is difficult. Thus is the half of the plight of parenting a child with a speech delay. It is difficult to realize that the little things that people say or do to encourage, help, show affection to, or validate someone are lost on your child.

On a more lighthearted note, communicating with a speech-delayed child can also make you feel a little OCD at times. The therapy idea is to repeat a word three times for proper object label reinforcement. For example, if I am trying to teach Scarlett that a cup is a cup, when she’s ready for a drink, I’d hold one up and say something like, “this is a cup. Would you like the cup? I will give you the cup”. It’s a little bit exhausting to try and come up with three different ways to use the same word! You eventually begin to feel a little crazy and like your entire world revolves around the number three.

Anyway, moving on.

Most parents have a general idea of when their child will talk. Most children say their first words around 12months(ish). Some sooner, some later, but 12 months is average (PSA: friends, your child was not saying mama or dada at 4 months. Syllable repetition is normal early sound/speech development, but your child has no association of what that word means. If they do, call someone, because you have birthed the next Einstein). You know that around 12 months when your child says mama/dada, they know who you are, what your label is, and that they have a relationship with you. You can know that somewhere around two(ish), you are likely going to hear your child say I love you (or some version of it), if that is a phrase commonly said in your household. The parent of a speech-delayed child has no idea when these things will be said, and for some, these momentous milestones will never come. The uncertainty is a heavy burden to bear.

Again, obviously there are other ways a child can convey the above sentiments– but friends, words carry immense power. Every parent has days where you wonder why on earth God thought you were qualified to be responsible for such precious little souls– and if you’re reading this and you don’t feel that way sometimes, please, message me your secrets! There are days where I feel like I am the WORST mother– and somehow, those are always the days my kids humble me by saying I’m their best friend, or their favorite mama, or that they love me six billion-seventy four-twelve-five-ten-three hundred (Jaxon’s new thing). They tell me on the most routine, boring days that it was the best day ever. I think these tiny things are God’s way of reminding me that I am not messing up my children to epic proportions, and to give myself some grace every now and then– as well as serving as a reminder to check my heart (thanks, John Crist) and attitude. It is hard to know that for the foreseeable future, my child will be unable to communicate verbally to tell me that I’m doing an okay job, and that my actions will not cause her to end up in weekly therapy as an adult.

*Please don’t misunderstand: I know my child does not resent me. Sometimes, though, the mind of a parent of a speech-delayed child (and a parent in general) is not rational. It’s just a thing.

All of this said: a child with a speech delay is likely to become a master of non-verbal communication. Whether their point-game is on point (see what I did there?), they have the ability to utilize ASL, or they make you become the world record holder for the longest game of, “oh, do you want _______”– they will compensate somehow for their lack of ability to speak.

It’s here that I am going to insert my “here’s what you should do” bit. If you know a speech-delayed child– get involved in trying to learn their non-verbal cues. Ask their parent(s) how they communicate and try and interact with them on their terms. The biggest thing though, is to celebrate the tar out of their speech milestones! I can guarantee you that us parents LIVE for every new word, for every new sound, and for every moment our children are able to verbally communicate an idea/need (even if it’s only through one word). Celebrate the little victories, friends, because for a parent of a speech-delayed child, every small victory is a big one.

To my fellow parents of speech-delayed children, I salute you: