Shanon

@shanonb2019
HI! I am a 20-Year-Old writer and disability advocate, I'm just here to speak my mind and advocate for what I see as right.
Shanon

3 Things I Want You to Know About Tics and Tourette Syndrome

As someone with Tourette syndrome, I have often faced ridicule due to my tics — from the common glares to the direct insults, even being followed by a police officer. These are very common occurrences for me, and for everyone affected by tics and Tourette syndrome. As I have said before, “Tourette syndrome is the only disability you can mock and still get away with it,” as that is true. The state of awareness as it applies to tics, in general, is very poor compared to other disability communities to the point that we are often labeled as “attention-seeking” and “druggies,” despite simply having a neurological disorder; one that often causes more pain to us than you could imagine. But I know a lot of this treatment that I receive is due to widespread ignorance and misinformation about the condition, in which case I would like to tell you three things I want you to know about my Tourette syndrome. 1. I can’t control it. One of the things I have often been accused of in the past (even by my own relatives) is that I can actually control my tics, but I choose not to in hopes that I will receive attention from them, or be labeled “more disabled” than I am. But that accusation is completely untrue. I don’t care for attention (my autism and anxiety kind of reinforces that), instead I rather avoid attention as much as I can. I can rarely avoid it though, because of  how vocal my tics are and how serious they can be. The truth is I would like my tics to be gone completely, as I suffer from them a lot. So the accusation that I can control them only makes it worse for me. I can’t control them, and even if I manage to control one tic for a period of time, it’ll just be replaced by another one. 2. It’s painful. Some people might think that tics are simply movements or sounds without anything else to them than that, but that’s untrue. When someone mocks my tics they don’t realize how much pain I actually am in. The tic itself causes immense pain before I manage to perform them. Why do you think I have to tic? In order to relieve that pain, but that’s only one reason they are painful to me. A lot of my tics are self-injurious, even the ones that are simple movements like eye-blinking. Tics often leave me scared and in physical pain, but people continue to mock them even when they see me crying and in pain. Why? Do you think I enjoy being unable to control my own body? Do you think I like being stuck in loops most of my days? I don’t like my tics, I never did, so please stop acting as if I do. 3. You don’t understand. There have been many times in the past when someone told me that they “understand” what I am going through based on once having a normal childhood tic. They’ve used their experience as a basis to claim that I can “control it,” and say that it will go away. But they don’t understand. While natural childhood tics can be uncontrollable, they are not the same as having dozens of unique tics that you deal with 24/7 for your entire life. Childhood tics are not something that interferes in your life. So please stop telling me you understand, when you don’t. Instead try listening to me and listening to other people with Tourette syndrome that need your support and help. I know there are many people that do not have Tourette syndrome and do not understand what I am going through. And I understand that many people do not mock tics or individuals with Tourette syndrome, I thank those people for their kindness and understanding, especially in a world full of ignorance and unhearing ears. With this post, I am hopefully I can at least spread a little bit of awareness, even if it’s simply about my tics.

Community Voices

McDonalds Was Mean to my Special Needs Students

I teach special education in a self contained setting. My job is truly my passion. I not only love what I do, but I LOVE my students. I spend 9-3:30 with them Monday through Friday and there are very few things I won’t do for them. Advocating and being their voice is one of those things I do for them.

My school is in a suburb of Chicago. We had planned a community trip to the pumpkin patch on Halloween, but the weather did not allow for that. My heart broke thinking about how sad my students would be. I decided to switch some things around and go to McDonalds instead. At McDonald’s the students work on skills we teach in the classroom. Some examples would be ordering food, waiting in line, and parking lot safety.

When we got to McDonalds the manager was so rude and told us that if we wanted to come eat there we should have called and asked them. Side note- there was one other person in the restaurant. He then rudely told us that if they wanted kids meals it would take them at least 45 minutes. Again side note- I had ten kids. It’s McDonalds- shouldn’t they be able to accommodate 10 kids meals without making children feel bad for showing up?

The man continued to be rude not only to us, by also to the other employees. I was in shock.

If you have a child with autism or work with children with autism you know that letting them play in the play land and then trying to explain that they have to come sit and eat after would be near impossible. We spent our entire time waiting for them to make kids meals. I felt awful and the kids trip was ruined. Not to mention they over charged most of the children for extra drinks.

I contacted McDonalds many times. I kept being told someone would call me back. The only person to call me back told me she was sorry for my ‘perception’ of what happened. I am sick to my stomach that a company so large and well known is okay with this treatment. I still have yet to hear from McDonalds or at least anyone that actually feels that this behavior isn’t okay. Please share in hopes that someone from McDonalds cares and helps raise awareness.

#McDonalds #Autism #Autism #AutismAdvocacy #SpecialEducators #SpecialEducation #SpecialNeedsFamilies #SpecialNeedsParent #SpecialNeedsPrograms #SpecialNeedsCommunity #Disability #RespectAbility #HunterSyndrome #GeneticDisorder #InclusionAndSpecialNeeds #BeKind21 #ParentsOfChildrenWithSpecialNeeds #DisabilityAdvocacy #IntellectualDisability #Teachers

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Shanon

The Abuse of Autistic People Is an Epidemic

On November 17, 2019 the autistic community hosted an international vigil for Max Benson, an autistic teenager who met a tragic end when he passed away from injuries endured while he was restrained for an hour in the prone position by his teachers. One year after the tragic incident, three staff at Guiding Hands School, Inc. have been charged with abuse related to the situation. The international vigil hosted in remembrance of Max Benson and to honor his life was hosted through social media platforms like Twitter using the tag #ShineOnMax, while a local vigil hosted by his family and the International Coalition Against Restraint And Seclusion (ICARS) was held at the El Dorado County District Attorney Office. The brutality Max Benson was subjected to was only one case of many that have happened in the last couple of years alone.  Abuse against children with autism was reported to have occurred at Forbuss Elementary when James Doran, a teacher meant to protect and mold young minds instead worked to break them. In Utah, a school bus driver was caught on camera brutally assaulting an autistic student. The cases of abuse towards children with autism are plentiful, more than I could bear to read in my lifetime. The high rates of abuse towards autistic children isn’t a new phenomenon or an epidemic solely found in schools. An autistic child was found locked in a wooden cage in a Jonesborough home, while an autistic woman was found locked away in a cage and forced to eat her mother’s ashes by five family members in Louisiana. The amount of abuse that is reported against autistic children and adults is at an epidemic level, without even factoring in the amount that goes unreported. This is a crisis of serious concern that reflects very poorly on our society as a whole. As Mahatma Gandhi once said, “The true measure of any society can be found in how it treats its most vulnerable members.” We hear about gun violence and other serious issues that affect children, but we often don’t hear about the widespread abuse by those who are meant to protect children with disabilities. We don’t hear about the bullying that leads to suicide far too often for disabled people. This is something that must change, as no society, no country can call themselves “free” and “progressive” if they ignore the most vulnerable around them and sweep them under the rug without giving them a second thought.

Shanon

Celebrating Small Accomplishments as an Autistic Adult

It would be an understatement to tell you that I have struggled a lot in my life. I have always had the cards stacked against my success. As a child, I struggled with an inability to speak and communicate with other people in any sense of the word, to the point that I had been in pain for weeks without my parents knowing. As I described in my previous post, I was given a chance to learn to speak through an educational environment that was tailored to my needs instead of trying to support the unique needs of 30 kids at once. I have come a very long way since then. Unlike “little me,” I am now capable of speaking to people, especially my relatives. I am very grateful that I have been given the chance to learn these skills; they have changed my life forever. But in spite of these achievements, I still have the world up against me, and I still have a very long way to go. Even as an adult, my difficulties with communication have significantly impaired me. I can debate for hours with my father, but I may be unable to mutter a few words to a stranger or even my brother whom I barely know. I am capable of holding entire conversations with my relatives about politics, but simultaneously incapable of calling emergency services for help. Even as an adult, I still live in two divided worlds of communication. But if I have learned anything over my lifetime, learned anything from the pain I have endured and my achievements, it is that I can never allow myself to give up on my future. Last year I filled out my first medical form; even though I shook very badly from anxiety, I endured it and achieved something. I went for my last meningitis vaccine myself (though my parents drove), and I can now check out groceries by myself. These are all very small achievements to many people, but to me, these are very important steps to furthering my independence and my abilities. While others may scoff at filling out a simple medical forum, it represents achievement to me. While others may not understand the small steps we can achieve, the little things are often the most important. After all, these small but huge things are what fuel me to keep going, and show everyone that I am not willing to simply “give up” to the low expectations of others. It was expected I wouldn’t speak at all, but I did. It was expected I wouldn’t be able to graduate high school, but I did. And it is expected that I won’t be able to work or be independent, ultimately requiring residential care. But if my past shows anything, it is that I will prove those expectations wrong.

Shanon

Learning to Speak as a Child With Autism

I would be lying to you if I said being a nonverbal child was easy. It was anything but easy. Imagine being unable to tell your parents you were in pain, or being unable to scream for help if someone tried to grab you. These are just two of many experiences nonverbal children may go through on the daily, two of the many things people who can speak often take for granted. I found myself in many of these situations as a child. I was once rolled down a steep hill in a rusty barrel by my then-teenage siblings. As I could not communicate to them that I did not want to do it, they never understood I was afraid until I shed blood. Maybe if I could have talked I would have never needed a visit to the emergency room. Maybe my leg wouldn’t be scarred up. These painful occurrences lasted for years, as I simply could not learn to speak for myself. I struggled to learn the most basic of sounds until I finally was given the education I needed, not the education others assumed I needed. It wasn’t long after being introduced to a learning environment that encouraged me to speak through fun games, snacks and rewards that I began to show the progress I had never truly shown before. This environment understood that children need to be encouraged to learn, and have that learning celebrated instead of having someone drill lessons into them. I was rewarded for my effort to understand and retain new words. In the years before I entered a teaching environment based on behavioral therapy, I was in an environment that emphasized teaching like a military instructor instead of peers celebrating together over their success. This never worked for me as I have always lacked the desire to speak to others — despite needing to, despite suffering due to it. I did not know what a word was or that it was a tool to communicate with others. But despite my lack of desire, having someone encourage me to learn meant I did have a goal that led to me trying. Without being given something to work towards, I would have never learned to speak. I thank my teachers and my therapists for that.

Community Voices

One long fight

Living with #TouretteSyndrome hasn't been an easy ride. Actually it's been a very hard and painful one my entire life, from inhibiting basic tasks to self-injury. But I have managed to fight through it all, and I hope to share about some of that in the near future.

Community Voices

Hey!

Hey, I'm new around here well... kind of I will be posting a lot about the diagnoses I have especially #Autism and topics related to it, especially relating to my past experience of being non-verbal when I was younger. #MightyTogether

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