This guest post is by Benjamin Michael Johann a young man on the autism spectrum who has been accepted into York College of Pennsylvania where he will be majoring in Forensic Science major in the hopes of finding a position one day in a laboratory. Benjamin is applying for the Spring 2018 Making a Difference Autism Scholarship via the nonprofit KFM Making a Difference. You can read more about the organization and how to apply for our scholarship here. You can help our scholarship program continue to help these students by making a donation here (the majority of our scholarship program is ran through donors from our community such as yourself).
Dear Grandpa,
I ‘m sorry that you died 3 days before my first birthday. Also thank you for marrying Grandma Nancy before you died, because we didn’t know it then, but boy did she help me later. She was great when no one could figure out how to get me help. You took care of us, even before you knew there was a need.
My life got interesting when I was 5 and started kindergarten. This did not go well. The teacher called my parents every night saying I was too immature for kindergarten, that I acted up too much, and threw too many tantrums. Mom finally relented and moved me back to pre-K. This time, I was very lucky and there was a great teacher who noticed my motor skills were not age appropriate, and I preferred to recite whole parts of movies or books, rather than share a truck with other kids. After talking to Mom about my issues it was agreed that someone from the school should come in and observe me. It was almost the year of the year before someone finally came and observed. They gave mom a diagnoses of autism.
Not knowing the politics of special education at this point Mom readied me for kindergarten in the fall, and asked for help. Mom found that no one would help her at school. Finally, a teacher told her privately that “unless there was an official diagnosis from a psychologist; no services would be offered.” Mom found that the only place she could get an appointment, without a 2-year wait, was at AI Dupont; but we would have to pay thousands out of pocket. Once again you came to our rescue as Mom, armed with the inheritance money you left her, made the appointment.
At DuPont, 3 psychologists watched behind double sided glass as I played and interacted with Mom. The conclusion was PDD-NOS (Like we had any clue what that meant!). They also recommended that I get tested for occupational, physical, and speech therapy. It was determined I needed physical and occupational therapy. I simply had no fine motor skills. I couldn’t hold a pencil or anything small. So, we went to Thera-play and, after many visits, my skills improved as I learned the make my right side do what my left was doing.
After a year of non-productive IEP meetings, Grandma Nancy, your bride of 4 months, came to help Mom. It was the last meeting of the year and she had the principal, up against a wall, and in a very stern voice said : “How dare you not offer any services to help my grandson”, her excuse was: “We have no students here that have needs like Benjamin.“ Grandma Nancy quipped, that it is against the law what they were doing to me, and thinking that she was a lawyer, they finally offered to show Mom schools that had autism services. (Way to go Grandma Nancy!) After touring several schools, we chose Exton Elementary. They were great, Grandpa! They had a lot of supports even a dark room I could go when I got “brain headaches” from too much noise. I spent half the day in Autistic Support. I even had an aide and she worked hard to try to get me to focus. This made all the difference in the world. I was at least a year behind other kids in in reading, but once she “cracked the code”, I was reading and loving it! My favorites where stories sharks and superheroes.
In Fugett Middle School, I was now in a new social and academic setting. Unfortunately, this school did not have Autism support. They did start to teach me self-advocacy, which I know is important for success but has been struggle for me. I was never very good at asking for help, and it cost me dearly. My grades where suffering and I was being bullied going to my locker, and afraid to tell anyone I needed help. At the end of middle school, my services were being cut to almost nothing. It was clear that there needed to be a change.
My life outside of school was also changing during middle school. Dad had left us and Allie had moved away to college. Mom now had end stage renal disease, and close to starting dialysis. She was also dating someone who she says we knew from when she was younger. He and his sons lived up in Harleysville and we made the difficult decision to move in with them. I got 2 new brothers and the boys finally outnumbered the girls (Poor Mom and Allie, yay me!) This move would prove to be a blessing.
Starting at Souderton High school was a double-edged sword; I had a chance for a fresh start but it was scary to be away from my old friends. You would be so proud, Grandpa, my social development is faring better than ever. I’m in Social Skills, a class designed to help anyone on the spectrum learn common social practices and how to engage in social interaction as adults. The class has helped me a lot! I am still working on my anxiety especially with noise, which can cause me brain fog. This year with my AP courses, this was something I had to face head on.
Mom has said that education was important to you, and I think I’ve made huge improvements since middle school. I’m even about to be inducted into the National Honor Society on Monday!
Of course, I couldn’t have done this without Mom. She has never given up on me even when things looked bad. Since Dad isn’t helping she is getting ready to put me through college, exactly a year after a kidney transplant. We all miss you a lot and thanks again for all the presents even when you weren’t here
Love, Ben
