RONAN — Twenty years ago — May 1998 — Julie and Rich Janssen’s son Jake was diagnosed with autism. He was 2 years and 9 months old. It was devastating news for the young parents. However, prior to the diagnosis Jake’s parents and a teacher at Early Childhood Services Pre-School program began to notice changes in Jake’s demeanor.
“He was a perfectly normal child at first,” Julie said. “Then he started to regress. A teacher at Early Childhood Services seen signs of autism. His slow speech, its patterns and regression was attributed to autism.
Rich said Jake stopped being Jake and began to retreat into his own world. He went from being a happy little kid with a smile on his face connected to his family to a disconnected member of the family.
Following the diagnosis, the Janssen’s realized just how dry the well was when it came to health care services or programs aimed at autistic children. Jake also has Type 1 diabetes and epilepsy that exacerbate his autism.
“We felt we were on our own following Jake’s diagnosis. We were essentially told to ‘Go home and deal with it on our own,” Julie said. “I was devastated at first because we would never lead a normal life, then we said, ‘Let’s beat this.’ Through the years, we’ve tried everything from special diets to various types of therapy.”
Jake continued to retreat into his own world more and more as the years passed. It was when Jake was in high school that the Janssens realized that their son would soon be an adult and like others his age should be blazing his own trail in the adult world. But there really wasn’t any assisted living facilities for adults with autism and the regular assisted living centers would not accept Jake due to his diagnosis.
However, there was a bit of relief with state funding available for a 40-hour-a-week in-home caretaker. After a couple of care takers that didn’t work out, the Janssens saving grace came in the form of 26-year-old Elliot Adams, son of family friends, and somewhat a son of the Janssens via the long family relationship with the Jason Adams family.
Autism Spectrum Disorder (ASD), more commonly referred to as autism, is a disorder with a variety of conditions that challenge the individual’s social skills, verbal and written communication, and repetitive behaviors.
The Centers for Disease Control and Prevention (CDC) estimates one out of every 68 children within the United States is autistic. However, autism is more common in boys than in girls, affecting one out of every 42 boys, and one out of every 189 girls.
The signs and symptoms of autism become most evident between the ages of two and three, but some cases have seen patients diagnosed as early as eighteen months old.
Symptoms and their severity may vary from patient to patient, but there are quite a few common signs and symptoms of autistic patients. They may have difficulties with relationships and social interactions, including having trouble making eye contact, with their body language, lack of empathy, and lack of interest in the same hobbies as their peers. They may also experience a lot of struggles with verbal and nonverbal communication. It has been reported that up to forty percent of patients with autism never speak.
Other signs and symptoms include an increased focus on certain pieces instead of the whole, preoccupation with specific topics, routines, and stereotyped behaviors.
Autism Spectrum Disorder has the spectrum label because ASD is a moving target, so to speak, when it comes to severity of the various types of effects autism manifests in the affected person. Jake is on the severe end of the autism diagnosis. He requires 24/7 monitoring.
Adams has been working with Jake since finishing high school. Adams was working full-time for Early Childhood Services working with the special needs students.
“Working with special needs children is what I want to do,” Adams said. “I worked at Head Start for a couple a of years then began to care for Jake full-time.”
Adams said he has spent so much time of his life with the Janssens that he feels like he is a part of their family. “I see Rich and Julie as my parents,” he said. “I’m with them more than with my parents. And Jake is my brother.”
We spent an afternoon with Jake and Elliot while they did their thing. Adams said their communication is mostly via body language, something that was apparent as the two carved up a huge Halloween pumpkin. Jake drew the face on the pumpkin with a magic marker. Then Adams carved out the facial template, took out the seeds to roast and eat with some sodas. It took awhile and it also took some steam out of Jake, who then retreated to his room for a nap.
Adams said he plans on being involved with Jake the rest of his life
“I love Jake, I think love has to be part of this type of relationship. You have to have a heart and you have to have patience,” Adam said. “I’ve been doing this quite awhile now and I plan on being involved with Jake and autism the rest of my life. I want to be here for him. He is my life calling.”
That pledge eases the burdens of the future a bit that are shadowing the Janssens. As they age their mortality and Jake’s adult future has become a huge concern to them.
“He is such a joy, for the most part. I can’t imagine my life without him,” Julie said but there will come a time when Jake’s life will be without his parents.
“As he got older we finally came to terms with Jake’s autism,” Rich said. “There is no cure, there is no pill, there is no known cause.”
There is hope though.
“We don’t dwell on our situation, we will continue to move forward,” Julie said. “We won’t be looking at what we can’t do but what we can do.”
What the Janssens can do is to lead the charge of building a specialized facility to care for adults with autism. It will assuage many of their concerns about Jake’s life without them once he has a facility to go as an adult and once they have passed.
Adams said he plans on furthering his education related to autism treatment and medical facility administration.
The Janssens through donations — they recently received an anonymous $150,000 — and personal financial contributions have purchased 11.5-acres just west of Ronan and plan on building a proactive living facility (PLF) for adults with autism. They envision four separate 4,020 square feet housing units, each with four private rooms with bathrooms, an enclosed recreation area, a common area living room and dining area, a kitchen and pantry, an office, a therapy room, a laundry room, an attached garage and a covered porch main entry.
There are plans to break ground on the first PLF unit this spring with hopes of completion in December.
More on the Proactive Living Facility effort next week.
For more information on the Proactive Living Facility project, visit website: https://proactivelivingfacility.org/