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Rafi Josselson is an autistic freshman at the Leffell School in Westchester County. He enjoys reading, trying different foods and, learning about new things.

Rafi's Blogs

April, 2022

This spring I traveled to Israel with my grade. I want to share with you my experience and what I learned about myself. 

My first trip to Israel was in 2016 with my grandfather, cousin, and a family friend. Looking back, I could not have done this year’s trip if I was the same person I was back then.  My coping skills were not what they are today. I melted down a lot and I did not adapt well to change. However, over time, I have gained vital skills which allowed me to go on my 9th grade trip. I can generally keep my emotions in check, I am more flexible when plans change and my social skills have improved. Still, I navigated certain challenges that I attributed to being on the Autism Spectrum, and I think it is important to share the valuable lessons I learned.

Airport Issues

I had a panic attack when boarding our flight to Israel. After three hours of waiting to go through baggage and security, we arrived at our gate, at which point I waited 30-45 minutes to board the plane and to find my assigned seat. When I finally boarded, it was chaos. Everyone was looking for their seats and some of us were confused about when we could switch seats. By this point, I was stressed, exhausted and I wanted to sit down. I did not know the people I was sitting with, and one of my classmates was already sitting in my assigned seat. My seat was in the middle of the back and far from adult chaperones. A flight attendant was yelling at me to sit, and I finally lost it and had a panic attack. I was so stressed that I could not even move. I do not remember how long it took to finally sit down in my seat. I believe it was somewhere between 3-5 minutes, but it felt like an eternity. The fact that this happened in front of people from school who I did not know was very embarrassing. 

Reflecting on this, I know that certain panic attacks are unavoidable. Considering the 3+ hours of stress and confusion, I could have panicked a lot earlier – but I stayed calm as long as I could. My takeaway is that I need to plan for situations like this. I doubt I am the only one who has had a horrible experience in an airport/airplane, so next time I will prepare for the worst-case scenarios and figure out how I should react and adapt. I also hope you can take away from my story that when you are seeing someone who is experiencing a panic attack, it is important to be kind and give them a few minutes to calm down. I am extremely grateful for my peers who showcased this type of empathy. After a ten-hour flight, I was able to land safely in Israel and I was excited to start the first leg of my trip.

The Dead Sea

At the end of the first few days of our trip, after visiting David Ben-Gurion’s grave, hiking in Ein Ovdat, climbing up and leading services on Masada, we went to the Dead Sea. While most of my peers complained about cuts that reacted with saltwater, I experienced a strong reaction to a different sensory input that was especially hard for me. 

My skin felt greasy when I got out of the Dead Sea, and that is something that is very uncomfortable to me. I felt very unclean when my greasy hands touched anything and this made changing very difficult. After 10-15 minutes, I finished changing. I washed my hands obsessively before sitting on the bus. I also insisted that I didn’t sit next to anyone. That might sound like I was selfish but I was genuinely worried that sitting with someone would make me feel even worse. I was trying to avoid panicking and focused on staying calm. 

Energy!

After the Dead sea, we drove to Jerusalem where we had a lot of fun (and exhausting) activities. I herded sheep, explored the Hezekiah Water Tunnel, participated in an archaeological dig, and attended Shabbat services in Jerusalem. By Shabbat afternoon, I was exhausted. I had signed up for an exciting old city tour that afternoon but I felt very conflicted. I wanted to do the tour, but I also knew myself and I needed to relax. 

Beyond just being tired, a break from the hustle and bustle of a trip like this is very valuable for me and other Autistic people. Many Autistic people, including myself, monitor their “energy levels”. For example, when we are fatigued we may need to do something like take deep breaths, have a snack, take a warm shower, or nap so that we can get back to being productive. Sometimes we may have too much energy that we need to let out. For example, when I am sitting for a while in class, I find myself shaking my leg. It was a tough decision but I decided to take a break so that I would feel better by the time we had our nighttime activity. Listening to my body was a good choice, especially since I got to visit the old city later that week.

Noise

The second part of our trip took us to Tel Aviv and up north. I met up with some family friends, hiked around one of Israel’s tallest mountains, dipped my toes in the Kineret, tried a sabich sandwich and schwarma (both are amazing!), visited Har Bental and did a little shopping at a mall. 

At the end of one of our days, I had to navigate my sensitivity to noise. I am far from the only Autistic person who has a hard time when it comes to noise. I remember my worst panic attack from 7th Grade was at a loud, crowded bat mitzvah party in a very small place with nowhere that was quiet. Within a few minutes of being dropped off, I was already panicking, and within a half-hour, I was picked up by a family friend. While my tolerance has improved, I still avoid loud, crowded places.

The nighttime activity was a drum circle. I was nervous but planned to give it a short try and leave if I needed to. Ultimately, I decided not to go, and I think that was the best decision for me at the time. I believe that even if I had given it a shot, I would have left. Not everyone will like every activity, but I think it is important to recognize that some activities may be stressful for someone who has sensitivity to certain sensory inputs like noise. If you are planning that type of activity or a loud party, it is always helpful to have a quieter place where people with sensitivity to noise can calm down. 

Reflections

We returned to Jerusalem for the final two days of our trip. We first visited the Vad HaYeled memorial (Holocaust Children’s Memorial) at Yad Vashem. This was one of the most somber moments of the trip. I thought about my great-granduncle, Freydel Galperin, who died at the age of 4, as we remembered the many innocent children who died during the Holocaust. We then visited Har Hertzl and the Kotel, which I found to be the most spiritual and meaningful moments of the trip. 

Our final day was the opposite – it was all about shopping and having fun! I got some new kippas, books, a star of David necklace and I ate a lot of good food!

As our plane landed, I thought about the experience I just had and how I would not have been able to do this a few years ago. My response to changing scenarios would have been much more dramatic. I did not know enough about how to handle myself. I did not know enough about how to navigate social situations. 

When I thought about how I felt, I realized I was proud of myself. Each year, I have worked hard to overcome the challenges I face. In addition to how I handled the transition to high school, this trip is proof of the progress I have made. I took advantage of almost all of the activities on the trip. And when I needed a break, I was thoughtful – is this what I want, will this help me? I took advantage of my bus rides to relax and read. 

What was I most proud of? I successfully balanced being part of the group with being me.

#JDAIM 22

Following an incident in school, Rafi (age 15) posted his thoughts on Facebook. Rafi has granted permission to Matan to reprint this post.

I’d like to talk about something I have noticed when it comes to Autism and the language some of my peers use.  My goal is to teach, not to lecture. I will not be naming names or condemning any individuals, but simply pointing out what went wrong.

In recent years, the R-Word (a word used to bully Neurodivergent people) has become less used. Instead, I have been hearing a word replace it, a word that has disastrous effects for the Autistic community. That word is “Autism” or “Autistic”.

Today I heard a student describe another student as a “retard” and as “so Autistic”. And yes, I did ask, neither of the students are on the spectrum. At that moment, I struggled whether to speak up. I didn’t go far, didn’t say anything about them saying “so Autistic”. I just told them not to use the R-Word, but I am still thinking about it. Should I have opened up about being Autistic? If this happened again, I am not quite sure what I would do, and I doubt I am the only one facing this dilemma.

Using the term “autistic” or “has autism” to express that someone is being dumb is something primarily concentrated in younger generations, especially on social media. You can find meme after meme of an annoying shrieking noise with a caption like “autistic screeching”. I have seen online comments calling people “autistic” if they say/do something that is perceived as annoying/weird.

This is extremely detrimental to the Autistic community. I hear a lot about “Autism Awareness” and I know that almost everyone knows that the Autism Spectrum exists. The problem is people are not educated about Autism.

Autism is as it is called, a spectrum. Not all people on the spectrum shriek or are sensitive to light/noise. One person on the spectrum might need to go to a home/facility to be in an optimal environment. I needed more support when I was in elementary school and over time and as I grew up, what I needed changed. Education, acceptance and working on an individual scale are key.

So especially to the educators and community leaders out there, please speak out if you hear people using the words Autism or Autistic in a negative way. Most people who say these types of things are just uneducated about the topic. We can change that.

I want to end with a simple thing. Don’t feel bad if you have ever had or communicated misconceptions about the spectrum in the past. We all make mistakes, simply taking the time to read the post is very helpful. Thank you all!! And feel more than welcome to share.

January, 2022

Like any freshman, my first few months of high school have been both exciting and stressful. My friendships have grown stronger, my classes are in full swing and I have begun many extracurricular activities. Naturally, this brings a new level of anxiety to my day to day experiences. I know I am not the only freshman feeling this way, but I want to explain what that feels like for me as an Autistic student. I think it is important to explain nuances and challenges that I believe are attributed to being Autistic, and where I think there can be societal improvements that would probably help everyone.  

I am no stranger to stress and anxiety. In middle school I began to experience panic attacks due to stress. I found my thoughts racing in a new way, and it was hard for me to control. Now in high school, I find that I have more stress but I am better prepared to manage it; that means my panic attacks are decreasing. At the beginning of this year, when I felt my anxiety rising, I started tracking my panic attacks. I learned a lot. I was having more panic attacks, but they were not as severe as they used to be. In middle school, my panic attacks could last from 1-2 hours. Now they are much shorter. One of the best lessons I have learned is to recognize patterns and triggers. Certain days and classes are more stressful than others, and I have developed strategies for these times. 

I recognize that my approach to managing my stress and panic attacks is directly related to the fact that I am Autistic. Like many on the spectrum, I like order and predictability. Luckily, I have a knack for organization. My homework queue is full of rankings and numbers – I have set up a pseudo-mathematical system to figure out what to do when and where. For example, last Wednesday writing this blog post was at number 2 on my list of priorities, while right now it is at number 7; tomorrow it will likely be at number 4. 

As I have analyzed my panic attacks, I’ve learned that they can be grouped into two categories: “build-ups” and “triggers”. “Build-ups” tend to be on stressful days when I have little downtime and a lot of classes. Triggers can happen at any moment, like something that reminds me of my late father or a sudden test I wasn’t prepared for. As I have a panic attack, there are certain things I experience that a lot of non-autistic folks also experience. I hyperventilate sometimes, or my mind might be racing. I have irrational thoughts, “Should I leave this class to calm down and risk an F?” This ties back to the comfort I find in predictability. I’ve “solved” this by developing three action plans for how I handle things.

Scenario One: Middle of the Day

Sometimes I can get a panic attack in the middle of a class and I know I have more classes coming. These are usually “build-up” panic attacks, so they can be caused by a variety of factors. How I handle these depends on the severity and what class I am in. When the panic attack begins, I first try to calm myself down by drinking some water. If that doesn’t work, I step out of class for a minute so I can take a break from the stressor. If that doesn’t work, I ask for help by going to the school psychologist or my grade-level dean.

Scenario Two: Beginning of the Day

Surprisingly, the most common time for me to get a panic attack is during the first hour of the school day. I am usually still tired, and I have a 70 minute period. Teachers may give out longer assignments or I may see some school news that stresses me out. I’ve learned that it is during this time that I am most vulnerable to what I call “what if-ism” – where I wonder about the amount of homework I might get in a day and then begin to worry about how I will complete it. Most of the time I try to push aside these thoughts and focus on my Teffilot (prayers), which occur right after my first period. But if I can’t, I use the techniques from Scenario One. 

Scenario Three: Close to Down Time

This occurs when I have been successful at holding myself together during class while I bide my time until I have a moment to pull myself together. I am more successful masking my emotions if I feel panic close to lunch, study hall or the end of the day. Unfortunately, this scenario is rare, happening only once so far this school year.

Something else I have learned this year is that I am less anxious when I am doing things I really enjoy. For example, I love to read. I average about an hour and a half of reading each day on the bus. Recently I connected the positive effect this has on my mental health on school days. Reading in the morning allows me to warm my brain up for learning. Reading in the afternoon allows me to cool or slow down while keeping my brain active for the homework I will have to do when I get home.

I am very lucky to have already met some nice friends, and I truly enjoy getting to have lunch with them every day. I have joined many extracurriculars, both at school, like the school newspaper, and outside, like USY, and taking a class with Tikvah Online Academy. I have also begun reading Torah at my synagogue more regularly. It was challenging to figure out how to balance everything at first, but I have established a consistent schedule. Being Autistic, I find this very reassuring. 

I know stress will always be an issue for me and for others but I don’t feel as hopeless as I used to feel now that I understand more about myself, and I have met and worked with so many supportive people in my community. I have learned over the years to be comfortable asking for and accepting help. In particular I want to thank Dr. Ilana (Kustanowitz) at Solomon Schechter Day School of Bergen County for teaching me strategies that I still use today, as did Mrs. Telem, Mrs. Teicher, and Mrs. Tal. I have been talking to my psychologist Dr. Gaydos since Kindergarten (wow!), and I feel very comfortable with her. At The Leffell School, I have developed relationships with Dr. Blank, Mrs. Mazo and other faculty who I know are there for me. I also have to mention my family and friends, specifically my mom who has always supported me. 

So I leave you with this message: Even if you are not Autistic, if you are stressed or anxious, it is important to find a peer, friend, teacher or administrator in your school who you are comfortable speaking with. There is always someone willing to help you. And you should also be ready to be that friend who supports others. It is through collective action that we help our community and ourselves. I’ll talk to you again (March 15)  about travel, the unexpected moments of life, and reflections on my Jewish and Autistic identity as I hopefully visit Israel.

October, 2021

My name is Rafi. I’m 14 and a freshman at the Leffell School in Westchester, New York. As a teenager on the Autistic spectrum, I view and experience the world differently than other people. I spend a lot of time learning about what neurotypical people do – how they act, how they handle situations. I thought it might be interesting to turn that around, to share with you throughout the year what it is like for me as I navigate starting a new school for High School. 

I was really nervous to start Leffell. I had been at my previous school for four years. I felt safe there. I find it challenging to socialize and meet new people. I have made and kept a few good friends over the years but I tend to keep to myself. My social anxiety can become even worse in unpredictable situations. I can also have trouble with crowded places, loud noises, and the heat.  I did as much as I could to prepare myself. I made sure I thought through different situations in advance. I asked a lot of questions and appreciated the support from the school administration and my mom. Still, although I met my teachers before school began, I did not know many other 9th graders and I was unsure what to expect. 

Walking down the hallway to the HSBK (High School Beit Knesset, Assembly Hall) for 9th grade orientation was overwhelming. I saw my grade, all talking to each other. I sat down nervously, contemplating the day ahead. A couple of friends from middle school, Elias and Ephram, came over to ask about my summer. That they did that helped me a lot. I am nervous to start conversations, so it helped me feel confident about the discussions that lay ahead.

 

After some announcements from the administration and some small group icebreakers, we had Tefillah (prayers). As I put on my Tefillin and Tallit (ritual garments), I thought about how this was not always easy for me. Last school year, I struggled with putting on my Tefillin, how it irritated my skin and made me feel uncomfortable. But now after lots of practice, I’m used to it. I’m glad my old school let me take it step by step, to make it feel like it was less a chore and more a goal I wanted to accomplish by the end of the year, which I did. I thought about how I will get used to my new school too, and I made a bold decision. When the Service Leader asked for Gabbais (prayer assistants), I volunteered. This was a big step for me, I had barely known these kids for an hour, yet I was now helping lead the service. I started thinking that my social anxiety might not be as bad as I thought. 

A few other things stuck out from that first day. After a team-building exercise during which I stood around awkwardly because a group activity with strangers is overwhelming, we participated in a chesed activity (volunteering). I was relieved when I had the chance to help the program coordinator with some other tasks. This is much easier for me than making small talk. It had already been a long day when we practiced our fire drill line but I held it together, and then thankfully, the first day was over. Overall, I left feeling that the day had been successful.

The second day was much more challenging than the first because I faced a number of challenges that required me to be flexible. My mother made some mistakes with the bus registration, so when in the afternoon I went to get on the bus I took to school, the driver wouldn’t let me on. This was my first day of busing at a new school, and I did not know who to ask for help, and I was not the only student in this situation. Finally, I found out I was supposed to go in a private SUV. I sat for an hour and a half in a small car, with kids I didn’t know, and I didn’t know when I’d be dropped off. I had a panic attack, which is terrifying for me. Thankfully, a week later and with the bus problem resolved, I get picked up at my own house every morning. 

In terms of classes, I think I will enjoy all of them, especially History and English. I am more concerned with Hebrew and Math because in the past, I have experienced a lot of stress in these two classes. For Hebrew, I have been trying to learn the language for a long time, but it has been a struggle. I hope this year will be different. For Math, I have found it difficult to pick up new concepts, and that gets me stressed out, and when I haven’t stayed on top of my thoughts, I’ve had panic attacks. 

At the end of the first “full” week of school, we had a Shabbaton (overnight school trip). People in my grade had mixed feelings. A lot of people seemed super excited for the weekend, but others, including myself, appeared very worried about the experience. I asked questions in advance, but there was still a lot I didn’t know and I knew I would have to be flexible. 

 

We were split into bunks when we arrived, but I didn’t know the kids in the bunk, and I didn’t feel very comfortable. I started to worry that it would be difficult to connect with them. I had a panic attack, and after what felt like an eternity to me, I was able to explain how I was feeling to an administrator. I was moved to another bunk where I knew some kids and over the weekend, found others who have similar interests as me. It turned out to be the best decision I could have made. The weekend was long and full of services, activities, and meals. But I made some new friends, and I came home from the Shabbaton feeling more confident about socializing and meeting new people.

Change is difficult, I think we all know that. But for many on the Spectrum, new scenarios or situations can be exceptionally difficult. Whether that is a new class, a new social setting, or a new responsibility, change is always challenging for me. But that’s what they are, challenges. I know that if I work hard enough, I can overcome what I am facing. I know there will be bumps in the road – that’s unavoidable — but I have a solid base and the right mindset, so I am not alone. Looking back on my first month of high school, I am relieved that this first hurdle is behind me, but I am also proud. I stayed calmer than I thought I would. For finding new friends and colleagues, for pushing myself to the limit. I have a couple of months ahead until my next edition (December 15th) is published! See you then!

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Stephanie Kallish is from the suburbs of Chicago. She went to Highland Park High School and grew up at North Suburban Synagogue Beth El. She is now a first-year at Brandeis University and is studying Near Eastern and Judaic Studies and Middle Eastern and Islamic Studies. She serves on the International Board of USY, and is involved in Jewish Mental Health Advocacy, Israel Education and general Jewish life. In her free time, Stephanie enjoys reading, biking, Jewish learning, and drinking coffee.

Stephanie's Blogs

May 2022

Covid and Mental Illness: Even as We Return to Normalcy, We Cannot Stop Talking About It

It is no secret that the Covid-19 Pandemic has taken a dramatic toll on the collective mental health of the world. Society experienced (and continues to experience) feelings of isolation, fear about the state and future of the world, and anxiety surrounding social interaction. These feelings have been easily explained as they correlated to the realities that the pandemic created. We felt isolated because we were physically isolated, we were scared about the state of a world that was literally in flux, and we experienced anxiety surrounding social interaction and not wanting to get sick. These experiences were and are very real and should not be taken lightly. At the same time, they are examples of feelings that many with a mental illness feel every day without any explanation or external cause. The experiences we have had as a result of Covid can empower us to be more empathetic and understanding of mental illness struggles. 

Additionally, the Covid-19 pandemic resulted in an increase and exacerbation of symptoms and diagnoses of mental illness. In the first year of the COVID-19 pandemic, global prevalence of anxiety and depression increased by 25%, according to the World Health Organization. This surge in mental illness was, in my experience and community, met with a positive response. My university put a larger emphasis on wellness and self-care, my synagogue and youth group shared mental health resources for isolation times, teachers worked to check-in with students at the beginning of class, various Jewish organizations in my area created Zoom mental health check-ins, and Jewish camps are re-thinking how they approach social emotional health amongst campers. I have also observed an increase of comfort level in talking about mental illness openly due to the experience of the pandemic. At the same time, I know that this is not true of all communities, and I am privileged to have grown up in a relatively mental health positive community. 

As the world slowly regains normalcy, we cannot lose our momentum. We did not need a pandemic to start talking about mental illness, but due to the pandemic, discussion about mental illness is even more imperative. With or without a pandemic, mental health should be at the top of our priority lists. Personally, navigating the pandemic as a high school and college student with mental illness has been deeply challenging. Anxiety about getting sick, and depression regarding isolation, added to my list of daily worries and challenges. However, the openness about mental health brought about by the pandemic has further inspired my activism. Locally, I worked to get mental health awareness flyers in 15 synagogues from every denomination. Many of the synagogue leaders that I spoke to noted that they now saw a need for mental health resources that they never recognized before. 

Even as Covid rates are going down, we cannot stop talking about the pandemic of mental illness. For many, the feeling of isolation is real even while surrounded by hundreds of people; anxiety is prevalent even when there is seemingly no immediate worry. Pandemic or not, we must keep spreading awareness and providing resources addressing mental illness. Keep checking in on your loved ones, friends, coworkers and students, no matter what our world looks like on the outside, people are struggling on the inside.  

February 2022

How my Struggle With Mental Illness Helped Me Realize What Truly Makes Me Happy

Teenagers are not told “do what makes you happy” nearly enough. We are forced to focus on academic achievement, getting into college and finding a spot on the competitive social hierarchy of high school, often at the expense of our happiness. Ever since fifth grade I had carefully calculated what I wanted my future in middle school and high school to look like. I knew what clubs I wanted to be president of and what classes I needed to strive towards to enhance my  transcript for competitive universities. 

Throughout middle school and high school I carefully followed these plans. I joined the debate team and a bunch of other clubs in school. I went to football games and did sports. I was the typical overachieving high school student. At the end of my freshman year I made an incredible discovery: USY (United Synagogue Youth). My involvement in my Jewish community was something I did not expect or plan for going into high school. But I soon realized that USY was a community that was welcoming, meaningful and warm. 

Despite my increasing involvement in USY, I was determined to “do it all” and stay involved in the clubs and extracurriculars I was a part of at my high school. But I found that debate did not make me feel the same way that USY did. While I stayed up the night before a USY Shabbaton (weekend conference) due to excitement, I stayed up the night before a debate tournament due to anxiety and stress. 

In my junior year of high school, I faced a difficult period of depression. Even though I busied myself with all of my social and extracurricular obligations, I felt completely empty and hopeless inside. I felt like I was just “going through the motions’’ of life, and that it had little meaning. However, when I was at USY or at my synagogue, I lit up. Judaism brought me happiness when happiness felt impossible. 

Even though it was clear that my mental health demanded it of me, it felt incredibly difficult to lighten my load of obligations. All of my friends were involved in clubs at school so I thought that it was the only way to be successful. This voice kept telling me, “You won’t get into college” or “You are a failure if you quit.” But finally I made the decision to stop my involvement in some of my high school clubs that I had dreamed of since elementary school and focus on USY. I realized that it is impossible to plan out your future because you never know what interests you will find or what opportunities will come your way. 

Most importantly, though, I learned that when you focus on things that make you the happiest, you will feel the best and be the best person you can be. In focusing my time on USY, I wanted to give back to the organization that gave me so much; I served on the International Executive Board. I did it not because it was a plan I had for years that I needed to live out. Actually, I could have never dreamed of serving on any board of USY. I did it because it was meaningful for me and gave me a chance to make a difference in my community. 

My experience with depression and anxiety eventually helped me realize that I can be in control of the situations I want to be in. Football games and big parties are not required of all high school students. I realized that there were so many other things that I loved to do like read, go on bike rides, and hang out with small groups of friends. It is important to take risks and try new things, but it is equally important to listen to yourself and your body and make decisions that will make you feel like the best you. 

Choosing to prioritize what made me happy did not come at the expense of achieving any of my goals. I now attend my first choice university, and still have a group of close friends that I love and keep in contact with from high school even though we are totally different from each other. If I was told “do you what makes you happy” more when I was younger, maybe my high school experience would have been easier. Let my story be a reminder that what makes you feel happy and good is always worth your time.

November, 2021

Content Warning: Su*cide and  depression 

It is 8:00 on Saturday morning. I carefully button my wool jacket and pull on my skirt over my tights. At 9:00 I walk into the large elegant sanctuary of my shul (synagogue), and I can hear the murmurs of morning prayers. As I sit in my usual row in the back, I am greeted by familiar faces. I am asked about my week at school, and I smile and talk about the usual; classes, friends and USY. But behind my smile, there is a secret, a piece of me that feels so inconsistent with who I am within the walls of my synagogue. Walking into shul on Saturday mornings feels like a breath of fresh air. It is a place where I feel happy, a place where I choose to spend my time because it is truly important to me. But, for the rest of my week, happiness feels like a distant memory. 

During my junior year of high school, I battled a paralyzing episode of depression. Each morning, waking up to get to school was a struggle, socializing was a chore, and I constantly questioned and doubted the meaning and value of my life. The dark cloud of shame haunted me. The jarring words of suicide and hospitalization were hideous gashes in the image of myself I projected, the involved Jewish leader that I was thought to be. As I sat in the familiar red chairs of my shul, I could feel the intense tension between the two conflicting identities I held. I was struggling to love and value my life, while at the same time I was supposed to be a leader in my community, a person that other Jewish teens looked up to. For me it was impossible to imagine the possibility of  other people finding meaning in my leadership, while I could not even find meaning within myself. 

My secret was something that weighed me down and made me question my true role in my Jewish community. I had the perception that everyone in my community was perfect, no one would understand my experiences, and that I was too broken for my high achieving congregation. But I realized that I was a part of this ‘perfect’ community and was one of the high achieving people within. If my mental illness is a secret that I carry, how many people in the sanctuary also have secrets? How many people struggle or have a piece of their identity that seems to conflict with my perception of them? I realize now that the image I projected to my congregation does not have to conflict with my personal struggle. I can be a person who excitedly arrives at shul on a Saturday morning and faces the challenge of mental illness. Mental illness does not have to counter Jewish identity, it can be a part of it. It is not something  unfamiliar to our community, it is just something that is not publicly talked about enough. Our struggles and  successes are all part of the fabric of who we are. It is important to recognize that the pain and failure that we experience is no less part of us than our achievements and triumphs. When synagogue communities talk about mental health publicly,  more people will feel seen, and less will feel burdened by their secrets. More will understand that it is possible to be a role model and imperfect, and that many of these people in our lives are. 

If you are reading this right now and are struggling, I want you to know that you are not alone. We really have no idea what our  neighbor, classmate, or fellow shul goer is going through. While mental illness can be invisible, support and destigmatizing efforts should not be. I hope my story can work to uplift the fact that mental illness is real and prevalent in the Jewish community, and that if we talk about it and start important conversations, more people will feel seen, heard and valued. Our struggles do not conflict with who we are, they are part of who we are. It is okay to not be okay.

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Noah Brick is a 15 year old high school sophomore from White Plains, New York. He has Tourette Syndrome and a few other co-occurring conditions such as ADHD, dysgraphia and anxiety. He is a youth ambassador for the Tourette Association of America. In his free time, he enjoys acting, watching “F.R.I.E.N.D.S.“ and playing Dungeons & Dragons.

Noah's Blogs

March, 2022

Your Disability Doesn’t Define You, Or Does It?

Creating a self-identity is very complicated, particularly when you have a disability. How do you embrace and own your disability without letting your disability define you? I seem to be collecting disabilities like they are baseball cards lately. So much of my daily life revolves around having these disabilities and the ensuing medical complications. However, I am not my disabilities. They are a big part of who I am, but they do not define who I am. 

There are many parts that affect who I am as a whole, such as school, my friends, and my personal wants, needs, and overall opinions. I work hard to make sure that I am comfortable with how I present myself and how I identify in the outside world. I do not get to choose whether or not I have a disability, or even which disabilities I have, but I do get to choose so many other aspects of my identity. And, I get to choose how I wear my disability. Personally, I wear all of my disabilities with confidence, so that the patchwork quilt of my identity cushions the parts over which I have no control.

When I was younger, I had motor and vocal tics. I made involuntary movements and noises. People would ask me if I was okay and I would respond, “Yes, it’s just this thing I do.” Having Tourette Syndrome as my main disability means that I cannot hide it. As I have gotten older, my motor and vocal tics have become more pronounced. They are often front and center and provide a “preview” of me before I even get a chance to properly introduce myself. So, how do I control the narrative? I choose to be outgoing. In a family of introverts, I am the extrovert. I’m totally fine attending a party where I only know the person who invited me. I put myself out there and am happy to go up to strangers to make conversation in such settings. I have a lot to say and being talkative works to my advantage. Frankly, THAT part of my self-identity allows me to push past the first impression my Tourette gives off. The “tic-ing” guy instead is replaced with the “friendly, affable” guy. 

I also choose to be an open-minded, non-judgmental person. I’ve had the same two best friends since I was 5 years old. Of course, we have things in common. But, we are also quite different and we struggle with different things. They have always been supportive of me, despite my disabilities. And, in return, I too accept them for who they are. My mom has an expression she often uses: “It’s not my story to tell.” This is why she is a good confidant. I feel the same way about other people. This is a big piece of my self-identity. 

I often struggle with emotional regulation. I feel things deeply – both positive emotions and challenging ones. This is a co-occurring condition that often comes with having Tourette. Part of not letting my disability define me is trying to find the positive side to it. For example, I am an empath. Being so in touch with my own feelings helps me connect with others because I can really feel, understand and have compassion for what others are going through. Would I be an empath if I didn’t have Tourette?  Being someone who can relate to the emotions of others is a really integral part of my self-identity. I didn’t choose TS, but I do choose to embrace this superpower it brought with it.

Can you guess my favorite hobby? It is playing Dungeons & Dragons. I could pontificate for hours about why D&D is so much fun and why I wish it were real. But, at the root of it, I think about what it allows me to do. I get to create, from scratch, the environment, character and identity of this fantasy world. In my real life, I get to mold and shape my self-identity BUT there are pre-existing conditions. It is important for me to keep reminding myself that while I didn’t get to choose the fact that disabilities are part of my identity package, just like in D&D, I DO get to choose the other parts that round me out. And, maybe the positive side effects of my disabilities are as important and integral to my self-identity as the aspects that I get to control. 

Self-identity is a journey and my journey to date has me realizing that my disabilities DO define me, but that is okay because they aren’t the only things that define me. And maybe, just maybe, I wouldn’t be the warm, open minded, confident, gregarious person I am today without them.

December, 2021

blog 1- the importance of self-advocacy

When you are diagnosed with a disability, you might at first feel embarrassed. Or, you might feel like you have to hide that disability – that is how I felt at first. But, over time, I learned that it isn’t something to be embarrassed about or to hide. Instead, I’ve grown to realize that it is more important to confidently own my disability and educate others. Never is this more important than when it comes to my teachers and educators.

Originally, my parents were the ones to talk to my teachers and explain my Tourette Syndrome and my co-occurring conditions. They would talk for me when I was too scared to talk about my Tourette Syndrome because I did not have the right words or the confidence to speak up. Eventually, they taught me to educate my teachers. I wanted to have my own voice in talking about my Tourette Syndrome because it helped me gain confidence as I explained it. 

When I was in 7th grade, I was having an extreme vocal tic; my music teacher said to the class that whoever was making the noises needed to stop. Can you imagine how mortifying that was? I went up to her after class and explained that I have Tourette Syndrome, which means that I have involuntary motor and vocal tics that I cannot control or stop. This was the first time that I had advocated for myself about my Tourette Syndrome, and it felt great. 

Unfortunately, the conversation doesn’t always go as well as that one did, and sometimes I need to explain my Tourette Syndrome more than once to the same person. I have had teachers make crude “jokes” that make fun of my disability. A few years ago, my language teacher told me that I should use my Tourette to curse out the principal about something with which she herself was frustrated. She told me that if I do it, I won’t get in trouble because I can blame it on TS. This was extremely offensive, and I explained to her how Tourette is not an excuse to do actions that you would not do normally. After this incident, I realized that I needed to talk to all of my teachers at the beginning of the year about my Tourette. I understood, then, that I can’t assume that others know about my disability, even teachers. There is no one better than I to explain it to them and help them understand.

Here is my advice for when you are advocating for yourself at the beginning of the school year. It is important to set up meetings with your teachers to introduce yourself and talk about the upcoming year. These meetings will allow you to have a few moments with your educators to let them know of any conditions, questions, disabilities, or struggles that they should be aware of. As soon as I get my schedule, I send a friendly email to my teachers asking if we can set up time to prepare for the year. In this email, I tell my teachers that I have Tourette Syndrome, and what that means for my life academically. 

After that initial meeting, you can’t stop advocating for yourself, and you can’t rely on your teachers to remember everything from the conversation. Throughout the year, continually ask to speak privately if you need anything and remember to raise your hand to ask questions in class. Don’t be afraid to ask questions, because it is likely that someone else has the same question and was too afraid to ask it. Another way to advocate for yourself is to ask the teacher for more time or explanations on assignments. 

It is important to note that If your disability significantly impacts your life, then there is a good chance you might qualify for a 504 plan or an IEP (Individualized Education Plan). These plans could include accommodations that give you equal access to the academic environment. For example, can you imagine what it is like for me to tic while doing an English or Math test? Clearly, it interferes with my ability to read, analyze and calculate. Thank goodness I have extra time to account for this. Don’t understand how to complete some homework? Ask your teacher to explain. Knowing how to ask for help in and of itself is a really important skill to learn and hone. In my experience, asking for help helps me relax and feel less stressed about not knowing what to do. When I feel stressed, my mind thinks about not only the topic I’m  stressed about, but everything that is bothering me. This makes the stress worse, so practicing self-advocacy saves me time and calms my mind. It might be the same for you!

Advocating for yourself can be intimidating. You are really putting yourself out there!  But, it is an essential skill that will not only help you as you traverse through school, but will also help you as you grow and mature into a self-respecting and self-sufficient adult. These little bits of advice and ways to advocate were given to me by my parents and they really helped me build up confidence. I hope they are helpful to you, too, and allow you to become more confident in yourself.

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