Joel had a brief experience with the local 4H club. One of the requirements was for him to write and say a speech... here it is, about his brother Luke.
“Good afternoon honourable judges, ladies and gentlemen, boys and girls, and fellow 4-H members. My name is Joel and today I will be sharing with you my experience growing up with an autistic brother. First off, let me explain to you what autism is and what it does. Autism, or ASD (autism spectrum disorder) is a developmental issue that affects how a person communicates and interacts with the world around them. ASD usually limits your social capabilities, and communication skills.
To start things off, here is one of the most famous quotes about autism: “If you’ve met one person with autism, you’ve met one person with autism.” (Dr. Stephen Shore – Special Education Professor, Adelphi University, Advisory Board Member). The reason this quote is so powerful is because it is explaining that all autistic people are different. This means you can’t really compare an atypical person to a typical person because all autistic people are unique in their own way. And this quote doesn’t just go for autistic people it goes for everybody, everybody is different in their own unique way.
My brother is 18, almost 19 years old—his name is Luke Verhoeff and he was born with ASD. And I would like to share with you Luke’s Journey. In May of 2005 Luke was diagnosed with a seizure disorder. Then sometime during July of 2005 Luke’s seizures were under control, until two years later, in May of 2007, Luke’s seizures came back. He was having around 10 seizures a day and the medication he had taken before was not working. Eventually he started on a diet that was wheat and dairy free. After he has put on this diet, his seizures started to decrease. Later on in his life we found out that it was the wheat that was causing his seizures. Ever since we have found this out, Luke has never had another seizure.
Luke also had something called “hypotonia” which is a decrease in your muscle tone. Luke had multiple therapies to help him build up his muscles. Some therapies were vision therapy, meaning he had to learn to follow an object with his eyes; hearing therapy, which used different sounds to strengthen the muscles in his ears; occupational therapy, which strengthened the muscles around his mouth and hands; and physiotherapy, which strengthened his larger muscles (legs/arms). There were many other therapies that Luke went through including oxygen therapy, neurotherapy, and hippotherapy (which is a fancy name for horseback riding therapy).
Recently we have learned that Luke has apraxia. The definition of apraxia is a neurological condition that affects the ability to plan and coordinate voluntary movements, particularly those related to skilled motor tasks such as speech, writing, or gestures. It is caused by damage to the parts of the brain responsible for motor planning, which disrupts the normal flow of signals from the brain to the muscles, creating a brain-to-body disconnect. An example of a brain body disconnect is if you want to pick up a cup or a mug beside you, but instead you pick up something else... even though you don’t want to pick that other thing up, you wanted to pick up the cup. There are also verbal brain-to-body disconnects. For example, someone asks you a yes or no question and you want to say yes but your mouth says no instead.
So, after learning all of this about Luke we started him on a program called S2C (Spelling 2 Communicate). The S2C program is where we acknowledge and presume that Luke is competent. Everything has been going in, but not coming out. This communication program has been training Luke slowly but surely, using lessons to spell words by pointing to letters on a letterboard. This is very difficult to learn, because not only does he have to train his eye to find the right letter on the letterboard, he has to physically (using arm pointing) point to the letter. Coordinating his body to do both of these things at the same time takes a lot of effort, patience, and practice. It is compared to learning a new language, where you start by learning words/vocabulary… smaller words first, then larger ones. Eventually you become “fluent” and begin to speak in sentences. Luke is now able to tell us his thoughts by spelling them out on the letter board, with the help of a practitioner.
Here are some of Luke’s thoughts that we finally get to know about!
What did Luke want for dinner that night (March 17)?
Hot Dogs. I really love them.
I want to take you out for lunch? Where should we go?
I want to eat at Senor Froggy’s: chips and salsa and root beer.
What do you take pride in?
Where I live.
Home or city?
City.
What do you want to watch on tv?
I want to watch Chicago Fire
Who is your favorite character on Chicago Fire?
My favorite is Severide.
Message to Joel:
I can beat you at anything, ha ha.
Luke has gone through so much, and he has also grown a lot. I can’t believe that he is going to be graduating this year! During my whole life living with Luke it’s always been difficult, difficult for my parents trying to balance raising Luke and me and to make sure that even though Luke needs more help than I do, my parents still made it clear that they still loved me and cared about me too. It also must have been extremely difficult for my brother, not being able to say what you really want or do what you really want. I have learned a lot about Luke over the years but the most important thing I've learned is that there is no one like Luke!
Thank you.