After their severely autistic 14-year-old son’s most recent hospitalization, this time in Pathways Treatment Center, prompted by a harrowing June morning and a frantic 911 call, Mindy and Zach Weber reached a new level of desperation.
The Kalispell husband and wife had already hit a crossroads in caring for Clay, whose severe autism leaves him with verbal skills that rarely extend beyond three-word phrases and makes him prone to outbursts, at times violent and frightening. The Webers had raised Clay in their home his whole life, an increasingly fraught and traumatizing experience, but had come to understand it wasn’t possible anymore: for the safety and well-being of Clay, them and their other 11-year-old son.
The June 22 incident brought that harsh reality into even clearer focus.
Mindy is a teacher and Zach is a physician, but their most demanding full-time job has been caring for Clay, who as a teenager is growing bigger and stronger, while his behavior is becoming more unmanageable for a home setting. They removed all doors containing glass, and their home has endured thousands of dollars of damages. There was one terrifying instance in which the smoke alarm likely saved their home and possibly their other son’s life. Their social life was nonexistent. In fits of rage, Clay hit both of them. They were exhausted, demoralized and heartbroken.
As hard as it is for any loving parent to come to such an understanding, they knew Clay needed to be — in fact would have the best chance of thriving — in an assisted-living facility surrounded by professionals committed to 24-hour care, seven days a week. They noticed how Clay seemed more at peace in Pathways, just as they had noticed the same when he was committed to Shodair Children’s Hospital at age 11.
“It pains me to say this, but Clayton’s behavior and the resulting stress has taken a significant toll on our family,” Zach wrote in a letter seeking a group home for Clay. “In addition, our relationship with Clay has become very strained as well. He seems to have no love for us and no joy in life.
“It is heartbreaking to feel that I can no longer take care of my own son, but just as heartbreaking to reflect on the relationship damage he has done to our family. We need to mend and start to heal.”
The problem is that there are few viable options in Montana for a teenager on his way to adulthood with Clay’s level of disability, specifically autism. Two autism group homes operated by AWARE Inc. in Anaconda had a seven-year waiting list, and the Webers ran into roadblocks in exploring options through the state, resulting in a prolonged struggle with state officials as the family fought to transfer Clay to a facility.
Ultimately, Clay was accompanied by a nurse and flown to Arkansas, where he was placed in Millcreek Behavioral Health’s treatment center for children and teens with autism. He had been rejected from two other out-of-state facilities because he was too disabled, mainly in his highly limited verbal skills.
Through the saga with the state, the Webers were also in contact with Rich and Julie Janssen of Ronan, a couple with a similar story involving a severely autistic son — 23-year-old Jake — who requires round-the-clock care and additionally suffers from epilepsy and Type 1 diabetes. The Janssens had been raising funds to build an assisted-living home, and the Webers eagerly joined the effort.
Now the Webers and Janssens are guiding Proactive Living Facility together, along with a board of directors, with the hope that other Montana families won’t have to endure the same hardships they have by providing an in-state facility for adults with autism. It would also be a home for their own sons.
“If I can prevent another family from going through what I have, I’m willing to tell my story and be an open book,” Mindy said in an interview last week.
“I don’t want families to have to send their kids 1,500 miles away to get the treatment they need,” she added.
Thanks to an anonymous $150,000 donation through the Montana Community Foundation, Proactive Living Facility has purchased 11.3 acres in Ronan. With the land secured, the nonprofit is now seeking $400,000 to build a home completely debt-free to reduce costs for families. Including funds left over from the original donation, the organization has put $137,000 toward that goal so far. As four professionals with careers leading a nonprofit venture, Mindy said they have no financial ambitions.
The long-term goal is to build a home at each of the property’s four corners. The center of campus would be a commons area with a garden. The idea is to give residents opportunities to be and feel productive, such as growing and canning their own food.
After sharing their story in a variety of venues, including at an Aug. 22 meeting in Kalispell about disability rights, the Webers have learned that demand is significant for such a facility.
“We already know we’ll have to say no to families because the need is so high,” Mindy said. “It’s been heartbreaking to see them coming to us with no other options, and we don’t have anything to offer them yet.”
The immediate focus is getting the first home built, specially designed to accommodate four adults with autism. It would be staffed with professionals, and each resident would have a bedroom and personal bathroom, offering privacy and space.
“We’re building this house knowing this is where our children will live forever,” Mindy said. “Because of their disabilities, they will never be able to leave the home.”
The Webers also plan to be active advocates for disability rights at the Legislature. The past year’s deep state budget cuts have heavily impacted human services, including those for people with disabilities.
“Zach and I will be there in Helena; Rich and Julie will be there,” Mindy said. “They will see our kids and hear our stories before they vote on those bills.”
The Webers haven’t been able to visit Clay in Arkansas because staff there wanted to give him a month-long adjustment period. But they have spoken by phone and Skyped, although with Clay’s verbal abilities, those conversations are limited.
Amid the pain of long-distance separation, moments of profound sorrow and heartbreak are softened by the guiding light of their mission: building a home for Clay, and giving other families their own glimmer of hope. On a recent phone call, Clay said he would be returning to Montana in 17 months.
“We have no idea where he came up with this number,” the Webers wrote on Facebook, “but we have decided to make this our goal for having Proactive Living Facility up and running to bring Clay back to the state he loves and misses.”
For more information, including how to donate, visit www.proactivelivingfacility.org. To follow Clay’s journey, go to www.facebook.com/Clays-Journey-305359956876561/?modal=admin_todo_tour.