Kalispell couple teams up with Ronan couple to lead nonprofit aimed at building an assisted-living facility for adults with autism, in a state with few other options
By Myers Reece // Sep 4, 2018
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.”
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Mindy Weber, Autism Mother, Kalispell, MT August 10, 2018
June 27 2018
To Whom It May Concern;
My family humbly asks for your approval that our 14 year old son, Clayton, be placed in a group home setting that can meet his needs associated with his severe autism. We have come to the realization that we can no longer handle Clayton’s behaviors in our home and after his most recent hospitalization (June 22 to present) we have reached our breaking point.
When Clay was younger and smaller he was easier for my wife and I to handle. While he has very limited verbal skills (one to 3 word phrases), his receptive language is a bit better. When he was hospitalized at Shodair Hospital in Helena in May of 2015, he was a small thin 11 year old boy and because he had initiated medical (atypical antipsychotic) therapy, we were prepared to handle his outbursts, both physically and emotionally. His behaviors have escalated over the last 3 years and he has destroyed our home, putting countless holes in the walls, kicking out interior doors, and glueing any photo or magazine picture he can find to our walls. He throws glasses to hear them shatter on the sidewalk. We can no longer use the word “no” or any similar words to control his negative behaviors as it sets him into an immediate violent rage which lasts up to 3-4 hours. In the previous 3 years he was better able to bring his outbursts under control, but he no longer has control of himself in that way. Whereas we were more successful at redirection and resolution of the causes of his distress in the past, we are no longer able to redirect him successfully. He is 5’6” and weighs 165#, so physical restraint is no longer an option for us, and it tends to aggravate his behaviors more. As Mindy (wife) and I grow older, we are also less able to physically control this growing young man.
In addition, we have an 11-year-old son in our home. Not only are we able to spend little to no time with our other son due to the time it takes to keep Clayton calm and out of his destructive behaviors, but our 11-year-old son has expressed fear that Clay will hurt him in his rage, as he has seen Clay slam through walls and hit Mindy and myself. When Clay begins an outburst, we see that Wes, our younger son, removes himself to outside or to a neighbor’s home voluntarily. He no longer feels safe in our home and we cannot ask him to continue to live this way. I am concerned about the impacts this will have on Wes in the future as we read more and more about post-traumatic stress disorder.
Clayton’s behaviors dictate how we choose to respond to individual actions by him and basically dictate our lives. “Pick your battles” would best describe how we have been getting by. If he breaks glasses or dishes off the back deck or rolls boulders down the hillside towards people sitting down below, we try our best to redirect him without saying “no”, “don’t”, or “stop,” but as we walk on pins and needles our whole lives, in an instant when he is performing a dangerous act that may harm him, us, or others, those words often escape the lips before we can stop them. Then, we are in for an often 3-4 hour attempt to de-escalate screaming and fits of rage(he has very limited speech but shouts and screams non-sensicals). If he wants to play in the kitchen sink, pouring water and dish soap for >1 hour at a time, at least he is not throwing the glasses into the rocks surrounding the yard to hear them crash. This is our all day, everyday. It is our only known existence anymore. Those around us, family and friends, rarely visit because it is frightening to them to see his behaviors and the resulting damage it does to our home. We then are forced to meet our own social needs outside the home, but have tremendous difficulty finding someone who has the knowledge and background to watch Clay for that time.
In the last year, Clay has destroyed two ipads in his outbursts as well as many other electronic devices, lamps, and other furniture in our home. The damage he has done to the interior walls of our home will cost of thousands of dollars to repair when he is out of the home. He slams all doors, toilet lids, and windows. We have removed all interior doors in our home that have any glass as we know that he will harm himself in a serious manner if and when he kicks through these.
The biggest difficulty we have in controlling his outbursts is in relation to his ipad. This device, which often brings him his greatest joy, also precipitates some of his worst behaviors. He plays games such as Angry Birds and watches hours and hours of airplanes taking off and landing on youtube. He stems by placing similar toy planes next to his head and mimicking the taking off and landing of planes on youtube. However, should the speed at which a video or game loads be slower than his expectation, his world begins shutting down. Immediate screaming, violent thrashing, and destruction of everything around him. One day last month, some sort of accident along the East side of Flathead Lake caused a wire to be cut and the entire Flathead Valley was without internet for 12 hours. It was like World War 3 in our home for those 12 hours. We have no way of getting Clay to understand that we cannot do anything about this problem, and the temper escalates quickly.
Last week, the smoke alarms in our home all went off around noon one day on a weekend. The smell of smoke immediately shocked us in the kitchen. Our younger son ran out of his room upstairs and yelled, “smoke!” We ran into our bedroom where Clay had been laying in our bed watching airplanes take off and land on his ipad. He was standing by our dresser, spraying an aerosol can of sunscreen onto a candle, watching the giant flame shoot across the room. We have had a candle burning in our home occasionally for years and never experienced such an event. Clay smiled and said, “no fire,” putting the can down and getting back into bed. We were very lucky this time. Had I been out mowing the lawn and had Mindy been on a walk or at the store, our house may have burned to the ground with both of my sons inside.
Everyday, we make numerous stressful decisions, having to decide which is more tolerable; having Clay slap or hit us, or watch him destroy our home. With his rapid growth secondary to puberty, it is also getting harder to choose to redirect him from less desirable behaviors (such as spitting inside or peeing on the floor rather than in the toilet). He refuses to wear clothes other than underwear in the home, but fortunately accepts that he must be clothed when he leaves our home. We no longer have the energy to deal with the resulting throwing of chairs, banging our cupboard doors until they crack, or the alternative physical abuse we endure from Clay when he is in greater discomfort, so we choose to let many of his behaviors go so as not to escalate to worse behavior.
We have simply given up fixing our walls and do not replace broken furniture. Along with the giving up on damage to our home and property, routine maintenance and other household projects are often left undone or impossible to complete. Our neighbors have been very understanding regarding Clay’s behaviors which often includes some underwear clad ventures into the front yard. They have however, surprised that we have been able to keep Clay in our home this long.
It pains me to say this, but Clayton’s behavior and the resulting stress has taken a significant toll on our family. 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. In the last year, I have found myself questioning how long we will be able to continue to keep him in our home. We have shed countless tears in long conversations about his future, but his most recent (current) hospitalization has helped us to understand that we can no longer provide the rigid and structured environment that Clay needs to thrive. He seems to love the hospital (Pathways) much as he enjoyed his stay at Shodair. The regimented schedule they can provide in these facilities helps Clay thrive, and as a working physician and a teacher with another younger child, we cannot provide this type of structured environment in our home.
Our last two visits over the last two days at Pathways, Clay has spent 5-10 minutes with us in good spirits, then stood up and said, “Bye. Love you.” And proceeded to walk back to his room. He doesn’t want any more from us than that. He is much happier there in the hospital than he has been in our home for years. Although his language is very limited, when asked if he likes staying in the hospital, he smiles big and says, “YES!”
While the constraints of caring for Clay used to allow for it when he was younger and smaller, we can no longer recreate and exercise to the extent that is healthy. Our lives have simply come to preparing foods, picking up messes, going to work, picking up what he throws off the deck, laundry and starting all over again. We have a small cabin on a lake and Clay loves to swim. He has spent his summers in the lake which has been amazing respite for us. This year, he refuses to swim. In fact, the outburst that led to his hospitalization and 911 call for fear of Mindy’s safety happened at the cabin, which is a very small space. He has no interest in swimming anymore and avoiding his dangerous behaviors in this small space will lead to us getting hurt. We have given up on this family space for the time being. It is sad for our family and sad for Clay because so very little brings him joy in life and this one thing is now off of his list of interests.
Clay also loves to ride a bike. He will ride is bike for miles around the Flathead Valley, diligently staying on designated bike paths and sidewalks. It is great exercise for Clay and friends and neighbors comment that they see him riding around town, smiling in the wind. We have a GPS tracking device on his bike and follow him every 5-10 minutes, but even the time it takes to watch him on the GPS is worth it to us for some respite. In 3 years of riding, he has never been in trouble on the bike, and the only call we ever received from law enforcement was when he got a flat tire, and when walking the bike home, a police officer stopped to ask if he needed help. He found the note we have written in Clay’s bike bag, and called us to say he had a flat. I was there in 5 minutes and we loaded him up. The police officer noted that we are doing exactly the right thing for safety, and letting this teenager have some freedom. Clay has ridden his bike every day of the summer the past 2 years, but now rides only once every week or two and only for 10-15 minutes as opposed to his previous 2 hour rides.
We are beyond lucky that Clay sleeps through the night. During his first 4 years of life, he slept very little and when diagnosed, we were told that Melatonin would help. Melatonin saved our lives 10 years ago and we were finally able to sleep. He sleeps 8 hours at night, getting up only to use the bathroom. Because he is now very agitated and restless, he has been having more difficulty falling asleep the last several weeks and we are concerned that our honeymoon of good sleep may be over. An overnight awake caregiver in a group home setting is a must for this young man.
Our life with Clay is not all gloom and doom. When he is comfortable, he can be a very sweet young man. He has a contagious smile and when asked directly, will give me a hug and a kiss on the cheek. I often rub his head or his back which he seems to like. He likes to climb into our bed in the morning and go back to sleep. Because Clay is severely developmentally disabled and has very limited language, our relationship with him is quite limited, but I know somewhere inside of that boy, he loves us and knows we are his parents. Last year, Clay stopped saying “Mom” and “Dad.” He addresses us as “Mindy” and “Zach.” It is my belief that he sees us as two more people in his life that he happens to live currently live with, not much different than he see his great middle school teacher and aides in his living skills classroom. There are not any strong bonds from his side, and although he has wreaked havok on our lives since the age of 2, we love him dearly and do not take this step lightly.
Three years ago, when Clay was in Shodair Hospital in Helena, his brother Wes was only 8 and begged us to bring Clay home. Even though they have a very limited relationship, Wes loves his brother dearly and helps Clay get through many obstacles in life. When we told Wes that we are looking to place Clay in a group home, our now 11-year-old Wes just bowed his head and said, “I think it is time.” He too is ready.
We are asking for autism group home placement because we are in fear for our safety, for Clay’s safety from himself, and for the safety of our son Wes. We realize that a structured rigid environment like a group home will help Clay blossom and be his best self, and we cannot provide that in our home.
Mindy and I take great pride in the fact that we have been able to keep this severely autistic often abrasive young man in our home for 14+ years. Our daily activities would seem bizarre and stress ravaged to the outsider, but accepting behaviors and avoiding outbursts has become our daily struggle and we can no longer continue in this manner.
Mindy (Balentine) is from Butte, MT, and her parent’s, sister, nephews, and many friends and family live in the Butte/Anaconda area, but we would welcome placement in any of the homes in the state for kids with developmental disabilities.
If we cannot place Clay immediately into a group home, and he is discharged to our in home care, my fear is that I will again be dialing 911 as my wife fears for her safety and the safety of both of our sons, just as I had to do on Friday, June 22, 2018. However, we are willing, happy, and capable of providing a house for group home services in Kalispell, should A.W.A.R.E. wish to staff.
We had previously discussed trying to get something started in the Flathead Valley, knowing that Clay could not be in our home much longer, and I think this is great opportunity to make this move. I am prepared to purchase a 4-5 bedroom home in Kalispell, today, and lend it to A.W.A.R.E. rent-free on a 5-year renewable contract. I have no interest in getting a dime of rent, and would be happy to see 3-4 other developmentally disabled adolescents and or young adults have a placement in this home along with my son. Mindy and I can purchase a house immediately, but obviously, we can’t provide the personnel resources to run this type of home. We have already identified 3 homes that are on the market which are relatively close to schools and other services. Please let us know how A.W.A.R.E. would like us to proceed to this degree. If Clay can be placed in a currently available home we would obviously like to transfer him to the Kalispell home when this house is purchased.
Thank you for your time and consideration. Please help our boy.
Zachary Weber, MD
Over the past few weeks I have been ignoring signs that I knew were there. I was hoping I was being over sensitive and that its ok for Clay to have bad days too. I was hesitant to go to the lake and start our summer season where we stay at the lake house from Thursday through Sunday. I had a gut feeling that I wasn’t ready or now I know my gut was telling me Clay wasn’t ready. I asked him if he wanted to go to the lake and he said yes so I started preparing as I normally do. We were at the lake for a few hours when Clay went outside to the path and rolled a huge rock down the hill towards the dock and the boat. I told him no and he became very agitated.
I told Zach I would handle it and to stay down at the dock with Wes. Clay continued to amp up and threw a rock towards the cars and then went in the house and kicked the garbage can as hard as he could across the house. I took him upstairs and physically made him stay on his bed so he couldn’t continue to break things. I gave him some of his medication to help calm him and it didn’t do anything. I just contained him to his bed and told him to calm down. As I was trying to physically restrain him I started to think in my head “I can’t do this anymore, I’m done.” After Clay fell asleep I told Zach that I don’t think I can spend the summer with him and we started talking about medication changes and tried to reassure ourselves we would get it figured out.
The next morning Zach went off to work and Clay slept most of the morning. I thought to myself “today is a new day, it’s going to be ok”. Wes and I spent the morning playing on the dock with the dogs and I devoted every second of peace to Wes and we had a great time. When Clay woke up I gave him some food and he was pretty calm for about an hour. I was trying hard to prove to myself and Zach that it would be a good day and I could handle Clay’s issues like I have in the past. Clay decided that he was going to be mad about the fact that his video wasn’t loading fast enough on his ipad and started to get really mad. I had a bad feeling that I was about to be in a situation I couldn’t control and I told Wes to go up to the shop on the four wheeler and stay there with his phone.
Clay snapped like I have never seen him before and he threw his ipad across the room and shattered it. My first thought was I had to get him out of the house because he will break all the windows and destroy our house. I ran out the door and threw the dogs in the car as I was fearful Clay would hurt them in his rage. I used all my strength (adrenaline) and body weight to physically push him out the door and lock it so he couldn’t get back inside I then ran to my car and started to drive up the driveway with Clay trying to break the window to get in. He was still very angry but also scared and wanted to get in the car. My instinct told me to not let him in my car for fear he would hurt me while I was driving, break the windows, and hurt Wes and the dogs. By this time Wes sees me driving with Clay running behind me screaming like a scene out of a horror movie. I called Zach and told him to call 911 to have the cops come help me transport Clay to the ER. By this time Wes had called Zach too in a plead for help for me. Wes quickly got into the car and we drove slowly away while Clay ran behind us screaming. Zach by this time was racing down to the lake from work to help me. The police called and through my manic screams I explained where Clay was and that I was blocking cars from being near Clay (luckily we live on a quiet road on the lake) and they were on the way to help. Clay ran for about a mile and a half and Zach was able to get there faster than the cops and Clay jumped in the car with Zach and he took him to the ER. I stayed back with Wes and the dogs to talk to the police and file a report.
On our way to town Wes held my hand and told me it was going to be ok. He is an amazing 11 year old and I tried to reassure him that it will be ok. I dropped Wes off at home with his grandpa and met Zach in the ER with Clay. Clay was calm by the time I arrived at the ER and we talked to the psychiatrist on call and all agreed Clay needed to be admitted into Pathways, which is an inpatient treatment center. I went over to Pathways and started the admission paperwork while Zach stayed with Clay while they transferred him to Pathways from the ER. Clearly Clay needs his medications to be reevaluated in a safe, controlled environment and that is where he is now. I have a sense of peace knowing he is safe, and they are figuring out his medication. I couldn’t go visit him today because my mind told me I wasn’t ready. Zach said he was comfortable and calm when he went to see him and that helped me relax.
Zach and I had a long talk and we decided we are going to move forward in starting the process of getting Clay into a group home. We do not enter this decision lightly but we know that Clay is changing into an adult and he needs different care than we can provide at home. Selfishly, I want Wes to have a normal home where he doesn’t have to watch his mom and dad try to keep Clay from throwing a tantrum.
As we enter into this next phase of parenting I know the road will not be easy. Zach is an amazing husband and father, he and I support and lift each other up through these hard times. We will encounter many road blocks on getting Clay into a group home and we are prepared to preserve and work hard for answers. There are not many options for group homes for teenagers with disabilities in Kalispell, so we are prepared to pioneer the way for Clay and others like him in our community. We will happily accept any help others have with experience in setting up nonprofits or other group home experience.
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Updated May 20, 2019