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Despite the diagnosis - My story

no picture Creator of www.despitethediagnosis.com
Savannah Ekman
Member since June 27, 2018
  • 1 Post
  • Age 18

Savannah Ekman pictured

Savannah Ekman pictured

1 in every 59 people are diagnosed with an Autism Spectrum Disorder. My name is Savannah and I happened to be the chosen one.
By the time I was eight months old, my mom could tell that I wasn’t developing like a “normal” kid. I was tested for hearing problems because I wouldn’t react to anyone or anything around me and I would just stare at my hands all the time. It was discovered that no hearing problems were present, so the search continued.
At the age of a year and a half, my mom could sit me down in a room and trust that I wouldn’t move from that spot; I could appease myself for hours just by staring at my hands or a leaf. The only exception to this was if there was a shiny metal object (such as scissors) in the room - at which point I could clear anything to get to them. Around this time, it became obvious that I had some major sensory aversions; I would sit in the grass with my arms and legs up so the grass wouldn’t touch me, I would scream and cry if I was put in water, and I would have huge meltdowns if I was touching sand.
Midway through my two’s, there were still no signs of language, not even pre-language skills such as making eye contact, responding to being called, or pointing to what I wanted. This is when we started to question if I was on the Autism Spectrum, especially given that my brother was diagnosed. At this time we also found out that I had a seizure disorder - a common occurrence for kids with ASD.
Shortly after the possibility of me having Autism being mentioned, my mom decided it was time to pull in early intervention services and fought to break into my world. She began teaching me how to interact, by doing things such as moving my chin to direct my eyes to meet hers when she spoke. I was put in speech and language therapy to start learning pre-language skills and to have my comprehension assessed. I also received occupational therapy; a therapy revolved around evaluating and intervening to help develop, repossess, or preserve meaningful activities or occupations of individuals.
By the age of three I was an incredibly frustrated little person. I was often seen wearing a padded helmet to prevent injury from repeatedly ramming my head into the wall. I would also bite and scratch myself to the point of breaking skin and could often be found rocking back and forth in the corner. Doctors had labeled me as someone who would never speak or become a contributing member of society.
At this same time, my mom and one-to-one worker spent hours and hours, over several weeks, to help me overcome my sensory aversion to sand, so I could attend my one-to-one worker’s beach wedding as the flower girl, which I did!
When I entered school, it became obvious that I suffered from severe separation anxiety from my mom. Every single day, for three years, my principal would have to come out to the school yard and bring me into the school in complete meltdown and it would take me hours to calm down. The only thing that helped this situation was my obsession with butterflies; my mom began to develop social stories (which are stories that display relevant situations and model appropriate responses) and she would revolve the stories around my interests. I remember my mom giving me a bracelet that had butterflies on it when I was in kindergarten, along with a story that explained to me that the butterflies from the bracelet would fly to her throughout the day, gather her love, and bring it back to me. This was enough to majorly bring down my anxiety about going to school and eventually I began to attend school regularly and would be fine as long as I had my butterfly bracelet on. On the days that I did attend school, I would wear a full ballerina costume, every single day, without fail and I would only respond if I was addressed as “Princess Savannah”. I didn’t even understand pretend play, I just truly thought I was a princess.
After my first year of Junior Kindergarten, my mom and the school decided it would be best to hold me back and redo Junior Kindergarten because I was so far behind developmentally. I was socially/emotionally behind in the way that I still wasn’t talking or interacting yet, I was physically behind in the way that I wasn’t potty trained and was incredibly clumsy, and my cognitive development was assessed at the same as a two year old.
By the age of four I started to learn how to communicate with Picture Exchange Communication Symbols (PECS), which are little cards that allow people to communicate using pictures. Around this time, I started to receive Intensive Behavioural Intervention (IBI therapy). This is an intense form of therapy that can take anywhere between 20-40 hours a week. The therapy consists of breaking down tasks into smaller, more achievable steps and repeating a task over and over again so the concept of the task can be grasped.
Midway through four years old, I was still only eating cereal bars for every meal and other than drinking pediasure, I hadn’t eaten anything else. At this point, we were going on a trip to Florida and my mom saw it as an opportunity to break me of this habit. She lied to me and told me that they didn’t sell cereal bars in the United States, so after a few days I finally broke and I ate a bowl of rice, which opened me up to trying a bunch of new foods.
At the age of five, I received the diagnosis of Autism Spectrum Disorder.
Midway through the age of five, I finally started to communicate. My mom used her experience with IBI therapy to help me speak my first words. Basically, she kept ignoring me when I didn’t use my PECS properly and wouldn’t respond until I gave it to her properly. Eventually I got so frustrated with her ignoring me that I slapped her on the leg to get her attention and yelled my very first words, “I want red licorice”. From there, I picked up on words fairly quickly because my mom had me repeat after her for everything I wanted, I would use my PECS as a guide for speaking, and I would copy after my younger sibling who was in the same developmental area as me. The story of my first words is one that I have carried with me throughout my whole life, as a motivator to fight my hardest to overcome the obstacles that come my way.
Age eight was a huge year for meltdowns for me. My family would have to run around the house shutting windows because neighbours all the way down the street could hear my screaming. I would have a meltdown EVERY time I was overwhelmed with sensory or I was trying to communicate an emotion. Also, when I was eight, I became mute for over a year. During this time, I endured some awful experiences solely because I couldn’t speak. I had a teacher make me get on the ground and scrub the classroom floor because I couldn’t physically tell her that it wasn’t me who had spread pencil marks on the floor; She told me ‘that if I couldn’t say I didn’t do it, then it had to be me’. At the same time, three boys came up to me on the school yard and beat me up, to the point where I had a broken collar bone, simply because I was mute. Bullying continued from that point on and still continues today. But, the bullying only pushed me to be the best person that I could be and I pushed myself to do more good in the community.
When I was eleven years old, I received the Youth Appreciation Optimist Club Award, an award handed out to youth who are making a positive contribution in their schools and communities. Thus proving the speculation made when I was three, that I would never be a contributing member of society, wrong!
When I was thirteen, in grade 8, I entered high school a semester early to escape severe bullying. At this time I posted a speech online about the bullying I had endured, where it was shared around 1200 times and viewed nearly 50,000 times!
When I was in grade 10, I hit a language based barrier in my math class and no matter how much I tried to explain it to my educator that I didn’t understand it, they just accused me of being lazy and unmotivated - which couldn’t be further from the truth. This was unfortunate because math was always a subject that I loved and now I don’t have much confidence in myself in it. Although, this actually ended up being a motivator for me. It encouraged me to speak out about unfair issues and I started to develop a t-shirt line with a series of anti-bullying logos and sayings, which caught me an invite to speak to a crowd of 20,000 people about my experiences in the Air Canada Centre, at We Day Toronto.
I’m not perfect. In fact, I'm far from it; I still deal with so many daily struggles, such as bullying, people not understanding me, sensory processing difficulties, language barriers...etc. But, looking back at where my journey started, I’ve achieved so much. It’s hard to believe that I am now a straight ‘A’ student, who takes part in various clubs at school and is on a straight path towards college. I have volunteered hundreds of hours to make a positive impact within my community, I have a part time job that I am great at. I have worked with many children on the Autism Spectrum and my knowledge on what it’s like to live with Autism, has ended up helping these kids in ways that many ‘neurotypical’ people just can’t. Even right now, I have developed a media platform where people can begin seeing individuals for who they are, rather than just looking at their label.
To my mom and siblings especially, but also to anyone past or present, such as one-to-one workers, daycare workers, teachers, principals, therapists, EA’s...anyone who has taken the time to get to know who I truly am and has fought to bring me further, thank you. Because of your patience and compassion, I have accomplished so much and done so many amazing things, despite the diagnosis.




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