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April is Autism Awareness Month. Living in our great community of Ronan, many people are aware of autism and know someone who is affected by it. Our son Jake is one such person.
Jake was born in 1994 and progressed normally. He was a beautiful baby and we doted on him as parents do. He was (and continues to be) our pride and joy. At 18 months, however, we began to notice that he was delayed in his speech. We found no need to be too concerned with this, and enrolled him in Head Start and preschool through Ronan School District. It was around a year later that he began to exhibit those classic autistic symptoms: hand flapping, obsessive-compulsive disorder, and so many other traits that people began to come to us and voice their concern that something may be wrong with him. At the age of 2 years and 9 months, we began the journey to continues to this day - raising a child with autism.
You would think when you receive such a diagnosis, there would be some cure, some miracle drug or intervention that will take it away. The day the doctor said those words to us, “Your son has autism,” we begged for a treatment, something to help him. The doctor simply said, “There is no cure. Take your son home and educate yourselves and come up with a plan to make his life fulfilling.” So we did. We went home and researched every possible treatment, every possible option. Through this, we discovered ABA, or Applied Behavioral Analysis. We built a classroom onto our home, and through Head Start and the school district, Jake was taught 30 to 40 hours a week until he was 5 and entered kindergarten. Our dreams for him continued to soar during this time. We were so full of hope for him and believed he could accomplish anything.
Unfortunately for us, Jake had his first grand mal seizure at the age of 5. It was believed at this time that it was a febrile seizure, as he was found to have pneumonia and hospitalized to treat his illness. A month later, he suffered his second grand mal seizure, and this time we were told it was probably connected in some way to that other word … autism. Seizures, however, are treatable, and at 5, we began a medication merrygo- round that continues to this day. (He continues to average about one grand mal seizure a week, even after a Vagal Nerve Stimulator Implant and two high dose epilepsy medications). Still, we had dreams and aspirations for him. A hope and desire for the future so strong that we believed we could overcome anything.
Throughout his school years, Jake struggled to fit in and had very little inclusion in the classroom. This is the way it is with autism. Educators struggle daily to come up with strong plans to help these students and make the best of their time in public schools. Being an educator myself, I know this is true. However, people with severe autism are a conundrum in and of themselves, and even with all of the advances today, it is unknown what the best course is when it comes to schooling. With an estimated one in 42 people now being diagnosed with some form of autism, more research and hard work needs to take place to ensure they are reaching their full potential.
Because of Jake’s huge needs, at the age of 8 he was put on the Medicaid Waiver through the state of Montana. This was such a huge blessing to us, as it helped pay for home care workers, medical bills, and assistive technology to make our lives easier. According to studies conducted and published by Autism Speaks, it is estimated that raising a child with autism that also has an intellectual disability is $2.3 million dollars over the span of their lifetime. Add to that medical bills and other issues and you can see how the average person would not be able to do this on their own. The Medicaid Waiver was put in place to ensure that individuals would not end up in institutional care, instead remaining in their communities with families, group homes, or assisted living facilities. It was a Godsend for us, and for hundreds of other families in similar situations. With this, our dreams grew even stronger, knowing that eventually Jake would be able to move to an assisted living facility in part because he had this waiver.
Unfortunately, Jake’s schooling came to an end when he was 18. He was struggling daily and was having severe breakdowns in school at least two to three times per week. Because of this, we pulled him out of school and hired a full-time caregiver to be with him while we worked. Our lives consisted of going to work and coming home to care for him full-time (actually, five years later, we still do). Jake still struggled even when home, and we soon noticed other changes. He lost 50 pounds in a matter of months. He was using the bathroom all of the time, craved pure sugar drinks (and got quite angry if he didn’t get them), and had the most fruity breath you could imagine. We went through doctor after doctor, at one point even subjecting him to a spinal tap to test for cancer. It was through research that I finally asked his doctor one day to test his blood sugars, as all of the signs were pointing in our minds to diabetes. At 8:30 one morning, we were in Ronan at the doctor, by 11:30 that day we were in an ambulance on the way to Missoula. Jake was in ketoacidosis, and by 3 p.m. that day diagnosed with Type 1 diabetes. We still had that hope though, that once we got his treatment under control, his behaviors under control, him under control, we would be able to transition him into an assisted living facility where he could grow and flourish with peers of his own.
Caring for our son - as with any parent - has been an emotional rollercoaster. For the last five years, we have worked on getting him to a point that we believed would make it possible for us to move him out of our home. Into a facility with others that share his needs and abilities. A place for him to grow. And three months ago, we made the hardest choice anyone should have to. We contacted his caseworker and said, “It’s time.” For him, for us. Know that this decision was made with Jake’s best interest at heart. We will not be around forever, and we want him to have a place in the world without us. We are all he knows. What happens when we are gone? This transition needs to happen with us to guide him through it. So … meetings were set up with the necessary people. We met one month and talked about options - a group home setting? The possibility of moving Jake into his own home that would be staffed by the state? All of these options were presented as viable and possible by the state at the first meeting.
A month later, we met again. We were so full of … you guessed it … hope. Knowing that this was going to happen lightened our hearts immensely. I can’t remember a time in the last 23 years that I had that much excitement for my son’s future. I sat down, ready to make plans. Ready to make this happen. And then, my hope was shattered in one moment. One small moment that I will never forget. “We will not be raising Jake’s cost plan, nor will we be placing him in a group home setting at this time.” Why? Why have we pleaded and begged and fought our whole lives for this to happen and you are telling us no? Why? What was their answer?
“You are being proactive in a reactive system.”
What did that mean, I asked. Well, they stated, drastic cuts have been made to the Montana Department of Public Health and Human Services, directly affecting cost plans for thousands of people. Therefore, Jake’s cost plan cannot be increased to meet the funding necessary to place him in an assisted living environment. How can we change this? we asked. How can we make this a possibility? What needs to happen? Imagine our surprise when we were told we have two options at this time. Two, and both are abysmal. We can state that we are no longer able to care for him (in essence perjury), or one or both of us would have to die. Then he would be put in a system that would place him wherever they could without thought to his locale. Without worry that Ronan has been his home forever. That this is where his family is. That is the reactive solution. Those words almost broke us that day. Almost …
But our hope will not die with this. We believe, even though our government has cut nearly $100 million dollars in the 2019 biennium to the MT DPHHS, that the people of our country will read stories such as ours and begin to stand up. For every disability, for every need, so that our hopes are realized. Our dreams. And the hopes and dreams of those 1,100 Montanans with disabilities currently on a waiting list to receive services through the state just like our son, as our regional case manager stated. To not watch the news daily and see stories such as the shutting down of Helena Industries or Kalispell’s Sinopah House. To see families devastated in this way is shameful to our country.
A new dream was born this day. The realization that approximately 85 percent of the people with autism in the world are under the age of 22 (afaa-us.org) sends a resounding need throughout our country. What will happen to these people, and their families, when their schooling ends? When the government tells them, “There is no place for them to go?” Should their needs go unmet? No. Because of this, we are starting a non-profit organization solely geared towards providing living facilities, educational opportunities, and job placement help to those young adults that are being left behind in our current climate … as well as research into how to best aid them and make their lives as fulfilling as possible. We humbly ask that you come alongside us. Stand up with us and make this dream a reality. Proactive Living Facility. Our dream. Our son’s future.
For more information, please find us on Facebook at Proactive Living Facility or contact jakenjen@ ronan.net. When approval of nonprofit status is received, also please look for our developing website at http://ProactiveLivingFacility. org.