Long time no see

 Hey everyone! 

It's been a while since I've written anything here. Over a year in fact. Sometimes I start things and then forget about them. 🙈Though there were some pretty tough things that happened to me at the end of 2019 which also have to do with the absence that happened in November and December. And then 2020 happened...there's a lot to be said about 2020 but this is a blog about my ACC so I'll focus on how 2020 helped me with my ACC.

When Covid-19 came in like storm to the US and everything shut down, so did my school. We started teaching from home. That was a very interesting process teaching preschool autistic children online. But the best thing that happened was how much time I had to really learn about being a teacher and how to be a successful one. In so many ways it really was the best thing that happened to me because I was able to be supported by my admin to help me improve my skills and now I'm thriving. 

It was a really interesting experience rereading some of my old posts right after I was diagnosed, I was so down on myself and thought I'd never be a good teacher. I think sometimes I am a better teacher because of my struggles. In 2020 not only did I move home with my dad for the 5 or so months that the world was shut down, I also met someone, online, in the middle of a pandemic. But he's AMAZING and he is the ying to my yang in a way I never thought anyone could be. Now I don't think as much about my ACC but when I do I accept it and understand that I am me and just like everyone else I have my own quirks, but that doesn't stop me, sometimes it slows me down but it never stops me.

Just wanted to check back in! Oh by the way, I did go through with the grad school program, I am one quarter (10 weeks) away from graduating with my masters. It wasn't easy, working full time, in a pandemic, managing my mental health and going to school full time but I did it and I have a 3.5 GPA to show for it. 

Signing off for now,

Jamie 

The Toughest Days

Some days are tough. I teach preschool to children who are severely on the Autism Spectrum. My job is a job of heart. My job is tough. Not having a corpus callosum makes my job harder. I forget things, I make mistakes, I get frustrated. And some days it feels like I can't do anything right. At All. Today was one of those days. Today was a day that made me ask myself why I do this, and how can I be better? And why do I struggle so often with the same things? And if my brain was "normal" would being a teacher come easier to me? Today I questioned everything about my career and my worth.

This is a battle I've experienced a lot. I can't be totally sure if this is an ACC problem or just a self-confidence problem or if they go hand in hand or what. For me I feel like they do at least as it relates to teaching. It's made even more difficult because it's not something I disclose at work so the frustration from team members inevitably happens and I can't really explain why I struggle so much (even if I disclosed the diagnosis I still can't accurately explain how I feel). I get overwhelmed, I get frustrated, and I shut down. Sometimes I just don't know how to react so I don't. But I know this doesn't help anything and things spin more out of control.

Some days I wonder if I should just go get a desk job, stop my grad school application and just be done trying to fight the battle. But then I think about the hundreds of children I could touch in my career if I stick it out and figure out how to make it work. I think about the families of the children I have right now and how grateful they have been to me for my kindness and compassion. I think about all the people who see my passion and tell me to keep going because of how passionate I am. I remind myself that we are always our own worst critic, and that this is a specific population that is a challenge to work with. AND THEN I think of the little boy whose voice we started hearing about 2 weeks ago. And I think about how I helped make that happen. Now that little boy is asking for all kinds of things, saying all kinds of things and his little voice is the sweetest. I think about that first day in the sensory room of our school when I heard his voice and how it made me want to cry. I think about all the parents who tell me "I just want him to talk" and how I can't promise anyone that this will happen, but then I think of this one child who did start to talk and I remember why I do this.

I missed a session with the cognitive rehab therapist because of a change in insurances (switching jobs and wait periods are a pain you know?) and I think in some ways those meetings help me boost my confidence. I'm getting strategies to help me cope with the many aspects of teaching. But I also have somewhere to just talk about how hard things can be some times. An outlet to speak openly about my ACC where I don't have to pretend. I'll go back next week and I'm hopeful that maybe we can talk about classroom management, a piece I've struggled with a lot and how I can help myself maintain my composure and regain control of the classroom.

Alright, I'm not sure if this is relatable to anyone. I really just had to vent a little bit!

Signing off!
Jamie

A Teacher's Saga

Have you ever seen those posts on Facebook about how a teacher's brain is like having 5,486 tabs open on a computer browser? It's actually not completely inaccurate. Most days that is how I feel. I think that is true of most teachers but I think for me its even more true because of my ACC. My brain feels like its working over drive to remember to do all the things that I need to get done in a day and also to remember to stop for that coffee creamer after work...and something inevitably gets missed...today it was the coffee creamer.

I have found though that the key to my memory success is writing it down. I have checklists for just about everything: what to do in the morning, what to do before I go home, what is expected for each little part of the day (there are a million things we cover at circle and I usually forget one of those things). And in doing this, this simple little thing, my life feels just a little easier. I can rest easier knowing that if I completely blank out I've got a list for it. But the more lists I've made, the more I've found....I'm forgetting less. It's so funny how the brain works.

It also amazes me that some of these strategies are the same ones I use with my kiddos on the autism spectrum. A co-worker friend pointed out that my lists are a visual schedule. We use pictures with our 3-5 year olds who clearly can't read but print is also a visual schedule. She sorta blew my mind when she reminded me of this. It puts my disability into a new perspective. I hate identifying myself as disabled because I feel totally normal. But it truly is a disability and overcoming my ACC can be just as hard but also just as rewarding as finding ways to cope with autism or down syndrome or anything else.

For me, I have a new perspective on working with children and families with disabilities as I walk through my own journey. Thankfully I have not let my ACC diagnosis (or the 28 years of being undiagnosed) stop me. I have pretty much accomplished any goal I set out to. From graduating high school and college to moving to North Carolina and becoming a teacher to now applying for grad school (I've not been accepted yet...but I know I won't rest until I am). I've always felt like these were things that meant a little more to me because I worked a little harder for it. My brother was considered gifted in school and academics came much easier to him but I always had to work my @$$ off. Then I graduated college with honors. And I'm not sure if it's clear enough to read but my parents totally got me a cake that said "With Honors". It was a big deal and something that did not come easily so we really celebrated it. My dad reminds me all the time that this perspective and ability to relate to these children and families can serve me to be a better teacher.

It's not always been easy and certainly my first several years of teaching were not easy and I didn't know why. I didn't understand why the one thing I wanted the most in my life just wasn't working out for me. I actually left teaching for several months but my heart told me to go back, and I made adjustments to enjoy it more. I'm confident that now with my ACC diagnosis and the assistance I'm getting I will be the teacher my 5 year old self knew I was meant to be. 

The moral of the story is that you can be anything you set out to be. It doesn't matter what you're up against because we are all up against something. We all face challenges but in different ways. For us ACCers it can be hard to look at us and know that our brains just work differently and its not something that is necessary to disclose at work. But there are simple ways to help yourself without anyone thinking differently of you. The office in my classroom is now full of notes "AM checklist" "PM checklist" "checklist to do on in-service days" "remember to bring xyz thing for xyz child" and its only November, so who even knows what it will look like in June! The point is find a system that works for you and you can achieve all your dreams! 

Signing off for now, 

Jamie 

Sometimes its just so hard

As someone with an "invisible disability" sometimes it can be so hard. I look normal, I act normal and I'm intelligent, so why is it so hard for me to do things that everyone else can do easily? It can be hard and scary to explain especially in a work setting and even in a new social setting. I've always been told not to disclose this information at work so I don't, but I have shared that my processing is slower. This is not in an effort to make excuses but sometimes things don't go the way I want them to and then I feel as if I have to explain the reason why.

When I came back to Pennsylvania at the end of the summer, I was hopeful of the new path I was taking. It meant I could get the help my brain needed and get away from some parts of my life in North Carolina that had become toxic and unhealthy. It also meant being closer to family and friends that knew me and loved me with or without this strange new disability diagnosis. With all of that though came a new living situation, a new job and new dating and social situations.

Last weekend I attended the wedding of my brother's best friend from grade school or even before. It was a beautiful wedding and a great time but it also showed me just how different I truly am and how much the ACC probably has to do with that. My dad was also at this wedding and often would ask me "who is that" as we saw groomsmen or other wedding attendees. While I knew many of them, I often joked "Dad, Zac and I went to different high schools together." Of course we attended the same school but our experiences were so different. I often stayed home on a Friday night and hung out with my dog (a dog well worth spending time with), whereas my brother was hardly ever home, he was always out socializing.

While I know its not really worth it to think this way, I often wonder "what if" I had been born "normally"? Would I be like my brother and have a huge group of friends? Or would I still tend to prefer my small group of really close friends? Would I have been considered gifted in school like my brother? Or would I have struggled still like I did in middle and high school? What would have happened if my parents had known 30 years ago when I was in utero and I had gotten all the services I needed back then (which seems like it wouldn't have been much because I am pretty high functioning) would I be struggling at work the way I have been?

Okay...all those unproductive thoughts are out of my system now...on to better things. Now that I know about what my brain is up against I believe that knowledge is power. I am trying to be kind to myself and not get too down when things don't play out well. But on the flip side I am also trying to push myself to succeed. I've had some challenges at work as I mentioned yesterday. Classroom management has always been a struggle for me but I have been given the opportunity to have some extra support by admin and yesterday everything seemed to click. It was a great feeling and one that really boosted my self confidence.

Don't get me wrong, I've had a great life. Social awkwardness and lack of social life aside, I have been able to find some great friends both in North Carolina and in Pennsylvania. I have even had a long term romantic relationship and although it was kinda toxic at the end, it did show me that I am capable of this kind of relationship and now I'm just waiting for a new prince charming to sweep me off my feet. And although most parts of my life are "normal" I still have a hard time pushing myself to engage in new social settings. I have wanted to go to Meetup events in Philly to try and make friends but I have anxiety about going by myself so I don't go. But then this leaves me without weekend plans many times. Most of the time I don't mind because my work life teaching special education preschool is so exhausting that I don't mind my low key weekends but sometimes I feel like it would be nice to have more of a social life.

Alright, I'm not sure if this rambling is meant to amount to anything, just a little insight tonight. Things are starting to come together in my life but sometimes it still sucks to know that you aren't "normal" like everyone else.

Signing off for now,
Jamie

Let Me Update You

Hello to all of my followers,
It will probably be impossible for me to detail all of the things that have happened between May and now but I will do my best to update you since it has been a long time since I made a post. In May my visit to the neuropsychologist was a total bust. The guy basically told me that my symptoms sounded like ADD and while I know that ACC can look like ADD in a way, I've been down that road before and the medication I tried had no significant impact on my ability to focus. So that was a major waste of time and money. Concurrently to this journey of ACC I was also facing other medical issues. Medical issues that took me to University of Pennsylvania Hospital, in the great city of Philadelphia, which I now call my home (more on that later). I spent the summer getting radiation treatment at Penn, living with a host family and going home on the weekends.

After my unsuccessful trip to the neuropsychologist in Raleigh it was recommended that I find a neuropsychologist through Penn, after all they were the ones who discovered the diagnosis. So I did, and she was amazing and thanks to her I am getting some support. Through a series of other crazy events unrelated to my ACC diagnosis I managed to find myself leaving North Carolina behind in August and moving back to Pennsylvania where my family and most of my closest friends are and starting my life over in Philadelphia. It has been a challenge and some of those challenges are related to the ACC diagnosis. Making friends has been hard, starting a new job has been hard and in some ways devastating as I faced similar challenges to before but, I have started having "cognitive rehab therapy" every other week for about 2 sessions now. We have been working on strategies for helping me stay organized and able to focus on a task through completion. I've only done about 2 sessions but I can see how much it is helping me and it just shows me even more how much early intervention is so important. If my parents and I knew then about my ACC I could have gotten more services from preschool and I'd already have the strategies I needed. Instead, I am learning them now which, at least I'm learning them and I do truly believe knowledge is power but sometimes I wish so badly that my journey wasn't like this and that I knew sooner.

While work has been a struggle I found myself today celebrating that I had the best day yet, our day had a flow like I was an old veteran teacher with no problem running the class. It was such a rush knowing that I had everything under control and I know that this will help me push myself to keep it going.

I have my whole life not let my struggles get me down, in school or in life if I set out to do something I did it. I went to college and not only did I graduate I was on the deans list several semesters and graduated with honors. This was not because I took the easy road, I busted my butt but even before I knew what it was called, I knew I had to work harder but when I wanted something, come hell or high water I did it! I will not let the ACC diagnosis stop me and today's great day in the classroom proved to me that I can do it and I want it so I'm determined that this is my year to make it happen! Now you are all caught up and I will try to remember to update this blog more! :-)

Coping with ACC

As a preschool special ed teacher, my grad classes spent a large amount of time teaching us about the "grieving process" a parent goes through when finding out that their child has special needs. You think about "Will my child graduate high school" "Will they ever live independently?" "Will they have meaningful relationships, friendships and intimate ones?" and on and on and on. You are also taught to empathize with the parents and to help them focus on all the amazing things that their child is doing: he spoke his first word, he's 2.5 years old but thats a huge milestone. As special ed teachers, we genuinely go along for the ride with each family. We celebrate these milestones along with the parents and family of the child.

Nothing, not even all of the knowledge of how much families grieve when they know their child isn't "normal" could have prepared me for facing the fact that I myself am not "normal". Even though I have always known that I have done things my own way and that I have had to struggle with certain things in school, I always felt "normal" until this diagnosis was shared with me and I did my own research and discovered that it was a form of cognitive disability. It's been hard for me to cope with. While my parents are saying "it all finally makes sense, we just never knew what it was called." I am wrapping my mind around new information about why I have had so much difficulty in my job and in normal day to day things. It's relieving but its also changed the way I have looked at myself and not always for the better.

So this week has been really rough for me. After going to the neuropsychologist for an assessment I had a few really bad nights where I was very emotional and down on myself. This has given me a different perspective on the process that the families I work with go through. While I have been incredibly successful in my life and I am very high functioning on the Complete-ACC scale, I have had to cope with the idea that the dream I had as a child to be a teacher is not one that is going to be as easy for me as it is for everyone else. And it may not happen because its a dream that would involve pushing my brain to work in a way that it does not function well. I am looking forward to going back to the neuropsychologist to determine what affect the ACC has had on me. What difficulties I really have and how I can improve in those areas.

There is so much unknown about this disorder. So much that is a spectrum, what it looks like for me is not what it will look like for you. While so much of my life is becoming clearer as to why it was the way it was, there is still so much about the future that is unknown.

If there is anything that ya'll wanna read about from my perspective let me know! I'm glad I can share this journey with such an incredible community!

Signing off

Jamie

First Post

As the title says, this is the first post of this new blog that I decided to write. I think that it can be helpful to write things down and I've always believed in sharing my feelings with others who are experiencing similar struggles with the hopes of being helpful to others. I guess maybe thats the teaching nature in me. So I thought I'd use this forum to share my story, track my journey and hopefully help others in the process.

First, I'm 28 years old and I'm from Pennsylvania though I currently live in North Carolina with my boyfriend and our two kitties! I graduated college in 2012 with an elementary and special education degree and I recently finished a post-bacc certificate add-on licensure for birth-kindergarten teaching. I've  had a pretty "normal" life. I had no health issues and only some difficulties in school but they were generally solved with pushing myself to study extra hard, stay after school with some amazing teachers who went out of their way to help me and parents who stayed on top of me and my school work. In November of 2018 my doctor noticed that my tongue was sticking out crooked. She referred me to an Ear, Nose and Throat doctor who had me do a scan which proved that I had something called paraganglioma. This is a benign tumor on my carotid artery that has caused the crooked tongue. I have seen many specialists between then and now to determine a treatment plan and my last appointment with a neurologist also enlightened me with the information that I had something called Complete-Agenesis of the Corpus Callosum (C-ACC)

What this basically means is that I have some level of an intellectual disability. It explains why driving was so hard for me to learn and why my social life was never really existent. It explains my troubles in school and probably why I'm still so disorganized.

I guess I have always been weird when it came to social interactions. I am a talker, at the age of 2 or 3 I was given a sweatshirt that said "I'm talking and I can't shut up." We still often refer to this shirt as a joke but I'm pretty sure if there was an adult shirt somewhere, someone in my family would purchase it for me now. I generally had one or two friends at a time and clung to them hard. This made it tough growing up because all of my friends that I have had over time had many other friends so if they were not free to hang out I ended up hanging out alone or with my parents. This was especially apparent in high school as I can remember spending many a Friday night with my dog instead of being out with my friends. Sometimes the companionship of a dog is just better...you know they won't blab your secrets. And this dog especially was the best at secret keeping.

I am sure I will have more to share as time goes on but I'm going to sign off now. I hope this will be helpful to someone who reads it.

Signing off

Jamie