Overcoming the adversities of CHD-3

Dear Community,

I am writing to address the extended absence of my daughter, Adalyn, from posting on her blog. This pause has been influenced by personal circumstances, and I feel it is important to provide you with some context, especially given Adalyn’s commitment to her project and this blog.

Adalyn has made significant strides in articulating her past experiences and how they shape her present. We are fortunate to have a wealth of photographs and videos that facilitate her reflections, and when gaps arise in her memory, both I and her family are there to support her understanding. Since toddlerhood, she has undergone numerous assessments, the most recent occurring during Thanksgiving week.

I have consistently advocated for Adalyn within the healthcare and educational systems, despite facing challenges that have led to a decline in my faith in these institutions. From her infancy, I sensed something amiss, yet I was repeatedly assured that all was well. Now 15½ years old, Adalyn reflects on her experience with educational assessments. Last year, when I requested testing for Dyslexia, the response I received—that she was “not intelligent enough”—was both alarming and unfounded, as it lacked any IQ evaluation.

We have since received the formal results from her testing, and in layman’s terms, my daughter is “NOT UNINTELLIGENT.” Adalyn simply learns differently. While I personally did not need a test to confirm this, the documentation serves as essential evidence when presenting her case to educational institutions that questioned her capabilities.

Adalyn is enrolled in a school district where students are placed in general education settings, often with a teacher and a paraprofessional managing groups of over 25 students. This environment does not provide additional resources for targeted instruction in smaller groups. Consequently, Adalyn encounters difficulties in reading and writing. While she can decode words, comprehension remains a challenge, necessitating detailed breakdowns and explanations.

After retiring from military service in June 2015, the same year Adalyn began kindergarten, I had anticipated pursuing chiropractic school. However, after experiencing a stroke in October that year, I realized the necessity of prioritizing Adalyn’s needs over my own educational ambitions. During this time, I supported her through the challenges of repeating kindergarten, as both of us simultaneously became reacquainted with foundational skills.

Adalyn is fortunate to have two parents dedicated to education; my husband earned his degree from Embry-Riddle Aeronautical University, and I obtained my degree in Allied Health Sciences while serving in the military. With over 20 years of experience in various medical fields, including military hospitals across several countries, I have learned to approach challenges with patience and sensitivity.

Despite Adalyn’s lack of a definitive diagnosis for some time, we persevered in seeking the appropriate support. Her determination throughout countless assessments—always completed without complaint—has truly been commendable. While she possesses a strong eagerness to please, Adalyn is also a typical teenager: spirited, independent, and engaged in common pursuits like watching television and playing games.

Upon receiving her diagnosis of CHD-3 last year, I experienced a complex wave of emotions. As someone with a medical background, I felt a mix of relief and frustration; finally, we had a diagnosis to validate our concerns and advocate for the support she rightfully deserves. Yet, my primary concern remains: how will Adalyn navigate challenges that others perceive as simple?

Now, as a ninth grader, she was assigned a year-long project in her English class. I saw this as an excellent opportunity for her to present her condition while contributing to the understanding of Snijders Block syndrome. This project could provide comfort to her and peers facing similar challenges. Throughout her academic journey, she has maintained a 4.0 GPA, excelled in competitive gymnastics, and developed aspirations for college.

Recently, however, Adalyn encountered frustrations with her English project due to unclear guidelines. The assignment asked students to select a topic that would enhance their writing, communication, and research skills. Options included creating a children’s book, producing a YouTube video, or compiling a blog to document progress. Regrettably, communication from the school regarding project expectations has been inconsistent, leading to unnecessary confusion. While I was initially hesitant about the blog, Adalyn’s advocacy convinced me of its importance.

What troubled me most was when Adalyn was instructed not to use the AI editor provided by Webpress while attempting to cite sources. This approach seems counterintuitive, especially for a ninth-grade teacher facilitating a project aimed at enhancing writing skills. I firmly believe that students’ personal stories are irreplaceable, and integrating AI serves to clarify and enhance their narratives, not diminish them.

Adalyn has traits consistent with Autism, ADHD, anxiety, and obsessive-compulsive behaviors, which can make completing assignments overwhelming. In our approach, I assist her by typing her handwritten work while she transitions to new assignments. However, this arrangement has led to concern about potential misunderstandings regarding her learning process. In November, following these challenges, I communicated with the principal about scheduling a meeting. I was prepared with evidence of her educational materials, illustrating my role in her learning given the inadequacies of her classroom environment.

Following this challenging period in November, I recognized the need for a pause regarding Adalyn’s blog, contemplating homeschooling as we approached the semester’s end. Amidst these developments, Adalyn expressed feelings of distress, including a troubling message to a close friend indicating thoughts of self-harm. This prompted a deeper concern regarding her mental well-being. Consequently, she last posted about her upcoming IQ assessment, but since then, she has remained silent.

In light of these challenges, her father and I have decided to transition her from traditional schooling to homeschooling. This alternative will allow her to engage in core subjects aligned with Arkansas state guidelines while ensuring she participates in the necessary standardized testing. Additionally, she will attend a brick-and-mortar school for electives, facilitating the social interactions she values.

Over the past month, we have observed positive changes in Adalyn’s behavior, suggesting a sense of relief as we navigate this new educational path.

To all the parents out there: never give up on your children! Every child is intelligent and capable; they may simply learn differently than what traditional teaching methods suggest.

If you have any questions about Adalyn’s past tests or her most recent results, please feel free to message me on Facebook. I prefer not to post her results online at this time without redacting significant information, such as the names of doctors. However, I would be more than happy to answer any questions you may have. And if you reach out to Adalyn, I know she would be excited to respond as well.

Thank you for your understanding and continued support. We look forward to Adalyn re-engaging with her blog and sharing her journey in a more supportive environment.

I didn’t know if I really wanted to make a post or not, but I know I have to because I think I’m supposed to do it weekly. Honestly, I’m not really sure, especially since my mom went through my Google Classroom and printed out every single thing related to this project that my teacher has given to guide us through the process from start to finish. Let’s just say I’ve never seen her so frustrated. I mean, I think I have, but she’s ranting and raving to my dad, and I can’t really put it all together. I know it doesn’t make sense to me either, but whatever. I just know she isn’t happy!

Today, I had more testing with doctors, as if the 15 past years of testing hasn’t been enough—let’s just have some more. I think this one is supposed to give me an official IQ score. I’m too stressed to talk about it right now, but I’ll come back to it. I hope everyone has a good Thanksgiving!

I’m a bit late posting, but it’s been a tiring week—definitely another draining one for the books. I think this might become my normal routine sadly. With my dad out hunting, it was just my mom and me.

It started off well since she drives me to school every morning; she’s currently a long-term substitute at the junior high. She took me to Starbucks a few times, which really helps on those tough mornings when I’m dragging. In the afternoons, we get out of school five minutes earlier at Freshman Academy, so I walk to meet her, and we head to an earlier dinner at Olive Garden. Spending this time alone with her is special, and I look forward to it.

However, there were some tough moments. School was challenging, and classwork quickly turned into homework, accompanied by my not-so-great attitude. I did well in math this week, even though my mom couldn’t help since she’s not exactly a math whiz. I reached out to my uncle, who teaches college math, and called my dad when he returned to his site. My mom sat at the table, noting that I had actually worked through the algebra myself; they just confirmed my answers. My 93% on the math test proved it!

Unfortunately, I was pretty difficult with my mom during this time because I was stressing over the information. I felt my teacher didn’t provide adequate notes, which led my mom to email her on my behalf. When the teacher called her, it didn’t go well for me.

On a positive note, I scored 90% on my English quiz for Salt to the Sea. I missed a question because I misread it, and while I could kick myself for that, I’ll take the 90%! I’m praying to the reading gods for the same outcome tomorrow since I have another quiz coming up.

As for my Civics quiz, I bombed the retake, scoring only 66%. Mom shrugged it off, saying, “It’s a wash; let’s move on and do better next time.”

But here’s where I messed up this weekend. Do any of you struggle with needing to have things organized just so, to the point where you can’t focus on anything else? All my mom wanted was for me to spend just one hour studying all my subjects with Quizlet. She had already unloaded the notes from Google Classroom, just like I had in previous years. But for Science, I felt I had to redo my notebook my way, rewriting all my notes. I ended up spending over six hours on it. I frequently go through things 2-3 times when I shouldn’t, and my mom says I make things harder on myself. Do any of you experience this?

It was definitely a long week. Most of you have probably heard the saying, “We don’t talk about Bruno,” even if you don’t have kids. That perfectly describes how I feel about this week. I wish I could have approached it more positively or even had a magic genie.

First off, I totally bombed my English quiz on Salt to the Sea, covering pages 80-132. I scored a 60%! I listened to those chapters at least four times and followed along in the book twice. No matter what I did, I just couldn’t grasp the material, and I felt like screaming across the world. My mom was really upset when I told her. When she quizzed me on the questions during the drive home, she answered them easily, even without seeing the options. She knew the scenes right before and after the questions, which made me feel even worse. I hate my mom sometimes.

My mom helps me study every night. If I have to read something, she reads it too because she says that’s the only way she can help me understand. She puts in a lot of effort and says she doesn’t mind because, after her stroke when I was five, she had to relearn many things. Some days she gets as confused as I do, asking, “What is this teacher even asking?” It’s frustrating because, even with her degrees—she was preparing for Chiropractic School before her stroke—she struggles with my homework, making me feel like I’m not the only one having a hard time understanding things.

I’m allowed to retake quizzes and tests because of my learning disabilities.  I have a IEP/504 plan though I barely ever used in when I was in middle school or jr high.  But this year mu gosh. Butt my teacher said that 60% is proficient (yes a 60%, F, is proficient. Is that really true? Is this why I’m struggling so much? I was able to read a bit, but it was  not at my grade level, and they still pushed me forward. Is it all my fault? 

Now I have to tackle another set of pages (133-198) with another quiz coming up on Monday, along with thirteen open-response questions and a story log due then. On top of this, I have to complete another part of my “year-long project” (YLP, this blog) This involves writing a reflection and an annotated source log using books and articles—things I find really hard to locate about my condition, CHD-3. My mom usually checks Facebook support pages because our doctors can’t provide much information other than how the genes mutated. It gets so overwhelming, and I just want to scream, “UUUUGGGGHHHH!”  That’s ultimately why I chose to write this blog: maybe teens or upcoming teens with similar challenges will stumble upon it and find some hope. I want them to know that they are not alone in struggling, and it will all be okay.

Then came Civics. Yep, I bombed that too, scoring a 59%. I studied my guide and used Quizlet, but none of it helped. It makes me wonder why some teachers even give study guides if they don’t match what’s on the test. Thankfully, my teacher is allowing me to retake the test after I show him my notes to ensure I’m keeping up.

In Science, I managed to do well, scoring 5 out of 6 on a CFA and 22 out of 25 overall. I also had a surprise quiz in Sports Medicine; I barely passed with a 70 out of 100.

Despite all the struggles, I ended my week strong in Agriculture, scoring 54 out of 50 on my test. I needed that boost!

However, balancing assignments has been tough. On Tuesday, I lost focus, and my mom ended up taking away my Chromebook and backpack because I couldn’t grasp one assignment at all. She and my dad tried explaining it to me, but I just didn’t understand. Even after my shower, I went to my room and finally worked hard to finish it last night.

My mom also took away my ticket to a Maroon 5 concert this Sunday because of my grades. Sometimes I feel like she expects too much from me, but I wonder if she really does. On a brighter note, I found out I earned an incentive day off from school for improving my state testing score in English! I can take November 21 off for doing well. My mom came to me with a choice: since I lost the concert because of my grades, I could earn it back by skipping the incentive day and going to school instead. To me, that sounded perfect. It’s likely a day when kids will be making up missed assignments, or maybe I can retake tests or get ahead on some assignments. I could really use all the time I can get.

Last year, I was tested for Dyslexia because I was struggling. After the testing, my mom learned I met two out of three criteria to join the program, but I didn’t meet the IQ requirement. I was told my IQ was below average and that I was working at my intellectual capacity. What does that even mean?

This week has been hard, but I’ll keep trying to improve and understand things better. Tomorrow, I am just going to take a breather, and spend some time with Dunklin (my horse) and forget about this week, and hope for a better one!!

This week is going to be a LONG and stressful week. I have a quiz in English on the next section, pages 80-132 of Salt to the Sea. I didn’t do as well as I thought I would on the first quiz, which has me feeling a bit anxious. I’ve been listening to and reading along with the book, but tackling 13 questions took over 6 pages just to answer and find supporting evidence. This book is almost all of our grade this marking period, which adds even more pressure on me.

In addition to the English quiz, I have a science test this week. Fortunately, I think that one will be easier because it focuses mainly on formulas, and math is my favorite subject. I really understand it, so I hope I don’t jinx myself! On top of that, I also have a test in Civics. I wish I could say I felt prepared for it, but my teacher gives us a study guide, and yet the tests always look completely different from what he says to study. It’s frustrating to put in the effort and not feel like it’s reflected during the test.

Then, there’s my Agriculture test. Right now, we’re learning about meat from different animals, the cuts of meat, and the production processes involved. My teacher even assigned a research essay that I struggled with. The topic was so broad that my mom helped by looking up articles and printing out a handful for me to use. I was just lost trying to figure out how to “research” on my own, which was really frustrating. To make matters worse, my math teacher usually surprises us with quizzes, so I can’t shake the feeling that my workload will only increase.

As if that’s not enough, I’m also reminded that there are only 25 more grading days left. That doesn’t feel like many at all, and it really heightens my anxiety. I can’t seem to shake this feeling that I’m falling behind.

Reflecting on my experiences, I’ve come to realize that my freshman year is nothing like middle school. It definitely feels more intense. I find I have no time for activities I used to enjoy, like spending time with my horse. After school, I’m busy catching up on homework, and it’s tough not having the teachers at home to ask questions about assignments. This often leads to fights with my parents; when I ask for help, their explanations always sound different from what my teacher said, making it hard for me to connect the dots. It’s a vicious cycle that repeats every night, and I usually end up finishing my work well past 10:30 PM.

Looking back, the start of 5th grade is when my grades began to reflect that, even with my difficulties, I didn’t allow them to hold me back. I applied everything I had, and I managed to stay on the A honor roll throughout my entire time in middle school (5th and 6th grade). There were parts I struggled with, but I had tutoring and the support of my parents, who would spend hours with me at the dining room table. I think that was just the beginning of this path.

Sometimes, I wonder if not having ADHD would make learning easier for me, or if there’s something more to my challenges. My parents have watched me struggle for years—it’s not something that just started. I made it through elementary school, but I look back now and wonder if I should have been held back a grade until I was actually ready. My mom and dad had me undergo a neurological psychological test that included everything from behavior to basic life skills, to learning. I qualified for all the learning resource programs at school, which has helped somewhat, but I still feel behind.

It’s hard to grapple with these thoughts. I’m often told I’m smart, and my parents have always encouraged me that way, but I realize they’re supposed to say things like that to support me. I started to believe this more in fifth grade, which is when I entered middle school here in Arkansas. The adjustment wasn’t hard, as far as I can remember. However, I had more trouble making friends because some people found me a bit awkward. I tend to repeat myself without realizing it, and I know many find that annoying.

Despite these challenges, I have one really good friend that I met in kindergarten. She’s considered my best friend, and even though she’s a grade ahead of me, we still manage to be quirky together. We both understand each other and support one another, which helps me get through these tough times.

This week is sure to test my resilience, but hopefully, I’ll find a way to manage everything while keeping my spirits up.

One of my first baby pictures, just because…

Oh my, we are now into the second week of the second marking period. I feel so overwhelmed! This afternoon, while I was standing next to my mom as she finished her day at the junior high, I couldn’t help but voice my feelings. She was loading kids into cars as their parents came to pick them up. I complained about being tired, and she told me she was feeling tired too.

What struck me is that she only has 35 more school days until her short-term substitute position is over. She’s counting down the days, working all the way up until Christmas break, which marks the end of the semester. So, just 35 more days until first semester ends and we have to face grades again. When I think about it, that really isn’t a lot of time! Compared to the first nine weeks of school, it feels shorter. Maybe it’s because this marking period has a few more breaks, which makes it easier to count down.

What surprises me the most is that I’ve made it to the 9th grade despite still struggling with reading. Every 9th grader should be able to read fluently, but I have faced difficulties since the beginning of my school years. I even repeated kindergarten because I thought it was due to missing a lot of school days. The truth is, my journey started differently. My mom experienced a stroke shortly after I began school, and she was often away in rehab, learning how to walk, talk, and eat—all those basics we normally learn as toddlers.

My parents always told me they held me back to allow my mom to learn alongside me. Little did I know that while I was struggling to hold a pencil and learn sight words, my mom was learning the same things. For a couple of years in grade school, we were on this learning journey together. I spent a lot of time in occupational therapy because I had low muscle tone, which made it hard for me to kick a soccer ball or master scissor skills. Physical therapy was part of my routine too; I even wore AFOs (ankle-foot orthoses) for my feet. That felt weird, especially since I later took up gymnastics and competed until the 5th grade. I was also in speech therapy while in grade school.

Even though I attended a regular school, I spent a lot of time outside the classroom at first. However, as you’ll learn, those challenges didn’t hold this girl back.

One major source of my stress this semester is the book I’ve been assigned to read in English: “Salt to the Sea” by Ruta Sepetys. With 418 pages to read, it feels like a massive challenge for someone like me, who struggles with reading and comprehending what I’ve just read. But I guess now is the time to tackle it!

We live in a world full of new technology, and there are tools available to help us express our thoughts. The amazing part is that this technology can take our stories and make them flow and make sense, turning our jumbled ideas into clear expressions. Although it can be very hard for me to put my ideas into words, I know that these programs can help make sense of my thoughts.

I can’t decide if relying on these tools is a good thing or a bad thing. On the one hand, they make things easier for me, but on the other hand, I worry that I might lean too heavily on them and not work on improving my skills.

With all this swirling around in my head, I realize I just need to take a deep breath. Even though I have 35 days left in this semester, it’s an opportunity for growth and learning. Yes, it’s challenging, but maybe each page I turn and every breath I take can help me get through this busy marking period.

As time moves on, I’m committed to embracing both my challenges and the tools that are at my disposal. With some determination, I believe I can navigate through this overwhelming time and come out stronger on the other side.

This past weekend was a filled with excitement! I earned a special trip to Disney with my dad, and it couldn’t have come at a better time. Report cards were released on Thursday, accompanied by the inevitable anxiety of Teacher/Parent Conferences. I had mixed feelings about starting Freshman year, believing it might just be the toughest transition I’ve faced so far.

The first nine weeks of high school were filled with a lot of homework, even though my teachers don’t really assign it like you might expect. If we don’t finish our classwork, it automatically becomes homework. For someone like me, who has a hard time concentrating, this means quite a bit of extra work.

My mom sometimes wondered if I belonged in my classes, which added to the stress. The report card loomed large in my thoughts, but during conferences, my parents met with all my teachers. To my relief, they had only positive things to say. They mentioned how hard I work and reassured my parents that I was exactly where I needed to be.

Reflecting on how far I’ve come, it’s easy to forget where my journey began. I attended Pre-K in New Jersey, fully enrolled so I could get the help I needed for my speech. During that time, my mom was deployed to Afghanistan, and I lived with my grandparents. They played an important role in my early development, taking me to my physical and occupational therapy sessions.

Moreover, they found a way to help me improve my coordination and balance by enrolling me in gymnastics. To my surprise, I thrived! The practice helped my muscle tone while building my confidence. When the school year ended, I returned home, excited to see my mom again. The experiences in Pre-K not only improved my speech but also prepared me for Kindergarten.

Thinking about my journey from then to now fills me with hope. Each step I took—through therapy, gymnastics, and supportive family, it led me to believe in myself. As I continue navigating the challenges of high school, I remind myself of the resilience I developed over the years. It’s comforting to know that I am capable of overcoming my struggles, just as I have in the past.

I’m eager to share more of my story as I make my way through high school. How have your early challenges shaped your present experiences?

Welcome to WordPress! This is your first post. Edit or delete it to take the first step in your blogging journey.