This guest post is by Sean Wilde, a young man on the autism spectrum who has been accepted into and will be attending Eastern CT State University. Sean is applying for the Spring 2020 Making a Difference Autism Scholarship via the nonprofit KFM Making a Difference started by me, Kerry Magro. I was nonverbal till 2.5 and diagnosed with autism at 4 and you can read more about my organization and how to apply for my scholarship here. I’m trying to make this nonprofit self-sufficient so I can make this my full-time job supporting the special needs community and could use your help so I could also give out more scholarships for students with autism to go to college. Learn more on how you can help our cause here.
I am now a 17-year-old, high school senior with Asperger’s and on my way to college. I thought long and hard about what I wanted to tell you, how I wanted to deliver my story, but instead of telling my story I decided to interview my mom. So this is our story.
As my mother tells it, she had a normal pregnancy complete with morning sickness and the feeling that she was larger than life. She tells me that she told everyone she was going to give birth to a bowling ball. Sure enough, I came out a health 8 pounds 11 ounces and 22 inches long, with curly black hair and lanky arms and legs. I did everything early or on target, held my head up at 13 days old and rolled right off the couch. I was a very social baby and loved being around people. When I was two, I started to show signs of, well what everyone called, “only child syndrome”. I guess that was a nice way of saying spoiled? I was not spoiled with things like toys and electronics, but with time and attention as that was all my mom had to give me given our financial situation. So at two, I tantrum when I didn’t get my way, but my tantrums were longer and much more aggressive than what mom thought was the average or “norm” for lack of a better word. She spoke to the pediatrician who called it “terrible twos” and said there is nothing to worry about. She argued that I walked on my tippy toes and seemed to get frustrated with even the smallest of tasks. The pediatrician did not think it was anything to be worried about.
As I grew, the outbursts got worse. Transition times were one of the biggest challenges. Mom says she would be in a full on panic and sweat trying to get me to leave the house on time. I could not follow multiple directions that to the everyone else seemed easy enough but my reaction was often just a blank stare. So she learned some “tricks of the trade” early on. When we were transitioning, she would give me all of the details ahead of time, warnings, a timer, and a count down. When needing to give me multiple directions, she would start with one, let me finish and move on. As I learned to read, checklists became a huge asset in our house. Although as my mother tells it, she learned much too late that the checklists should have come with no talking. Just put it down and walk away.
By age 10, I was in full meltdown phase which lasted until I was 14. I would tantrum like a 2-year-old when my thoughts got overwhelming and I could not shut my brain down or when doing schoolwork my brain took a detour and just completely went blank. By 2013, mom was at her wits end, doing this all by herself. It was like groundhog day every day. Struggle to get out the door, giant yelling match, tears, go to school, come home, homework, massive struggle and a yelling match, massive meltdown, tears and I am sorry’s, snuggles and tomorrow is a new day. We will get it right tomorrow. Some days we both ended up lucky and the cards fell in our favor. But most days it was a full on war.
In 2013, I had my first visit with a psychiatric APRN who diagnosed me with Asperger’s. In the meantime, mom read everything she could about parenting a child with Asperger’s. By 2014, I was flipping furniture, putting holes in the walls and just melting all over my house. Mom had no idea where to go or who to turn to. My therapist said, “when Sean exhibits these violent outbursts call 2-1-1 and mobile crisis him”, and so she did. It only stopped my behaviors in the moment. My therapist then said, “next time take him to the police station that should scare him straight” and then it was “take him to the hospital ER”. Mom did try the police station, but she just could not bring herself to drop me in the ER. She said she knew that was not what I needed, but that there was something missing, something we were both missing. Back to the APRN we went. In 2015, my now step-mom moved in with my mom and I. As an observer, it seemed she could have a non-emotional outlook on things and all she wanted to do was help. So she watched our interactions for a while and then started to give some advice, which as my mom remembers was not always received well, but the things she said actually worked. Changes were made and consistency entered my life at last! After years of begging the district to test me, they finally gave in and my diagnosis was spot on and that is when the diagnosis of Asperger’s changed and fell under the Autism Spectrum Disorder (ASD). The school worked with us to develop a fair 504 plan and with constant reminders to use it, it began to work. I had a safe space and person identified at school to go and talk with when I became overwhelmed or frustrated and I was not taking all of that negative energy home. I could ask for extra time, have teachers chunk assignments, get copies of notes. It should also be noted that part of my Asperger’s is having a processing disorder, mainly when it comes to thoughts getting down to paper. Oddly enough, I can verbally walk you through my paper or anything I have just learned, but I struggle with note taking and essay writing.
Our life at home changed drastically. It went from a stressful, walking on eggshells, often volatile home to a peaceful house filled with fun and laughs. Asperger’s looks different for everyone but it also looks different through the eyes of those around us. What I would like every parent to know is that if you think something is different, “off”, out of place, not making sense, use your voice and fight. My mother would also not have the understanding that my needs are very different from the next persons and that I need to live in a world that moves just a little slower and that is ok.
Kerry Magro, a professional speaker and best-selling author who is also on the autism spectrum started the nonprofit KFM Making a Difference in 2011 to help students with autism receive scholarship aid to pursue a post-secondary education. Help us continue to help students with autism go to college by making a tax-deductible donation to our nonprofit here.
Also, consider having Kerry, one of the only professionally accredited speakers on the spectrum in the country, speak at your next event by sending him an inquiry here. If you have a referral for someone who many want him to speak please reach out as well! Kerry speaks with schools, businesses, government agencies, colleges, nonprofit organizations, parent groups and other special events on topics ranging from employment, how to succeed in college with a learning disability, internal communication, living with autism, bullying prevention, social media best practices, innovation, presentation best practices and much more!My