Once, my husband pulled the truck over at a pretty spot alongside the river, at that sweet moment when the golden afternoon slides slowly into evening. He and our son got out, while I stayed in the truck, where our baby girl was sleeping, and watched as he showed our son how to cast a bait net. The net flew up and spread like magic, wide and clear, against the sky, in fading sunshine like warm honey, and I remember thinking clearly, “I never want to live anywhere else.”

With the exception of my college years, and the years my husband spent proudly serving his country as a United States Marine, we have lived in this corner of Missouri our whole lives. Our roots go deep and wide, with family spread throughout the state. We are involved in our community. We attend church. We sit on committees. We have friends. We have raised our children to measure seasons by the blooming of lilacs, the swelling sound of cricket frogs, the slow march of green combines on long stretches of country highways, the clean smell of snow in a sky gone gray. They have grown up, digging in dirt alongside the golden-brown eddies of the river and singing the Doxology on Sunday, that riverbank dirt carefully scrubbed from underneath their nails.

My husband and I are both employed in jobs that pay well and with work we find meaningful. We have a home we love. The backyard is big and fenced in, and I can open up the French doors off my bedroom and let kids and dog alike tumble outside. We just sold it.

We had to, so we can move to Minnesota.

Our son is disabled. Initially, he was diagnosed as autistic. Getting him any sort of meaningful support or services at school was a tremendous battle. We paid for his testing (we shouldn’t have had to), we brought the hard data to the school district to ask them to test him to see if he qualified for an IEP (though his performance in school should have been enough to trigger testing), and the district already had the papers denying us even a testing option printed out and ready for us to sign before we even sat down at the table. We spent thousands of dollars providing him with therapies the school should have provided but wouldn’t. We had to bring in outside advocacy. But that’s what happens when schools aren’t funded, and parents like us fight for every scrap.

Then, he began to hear voices, which started us on a three-year battle with the health care system and the complete lack of mental health services for children in this state. He was initially diagnosed with “Psychosis - Not Otherwise Specified,” because – we were assured again and again – schizophrenia is incredibly rare in a child as young as ours. And it is. Schizophrenia affects 1% of the population. Early onset schizophrenia, which means before the age of 18, impacts 0.4% of that 1%. And early onset childhood schizophrenia, meaning a diagnosis before the age of 16, represents .04% of 0.4% of 1% of the population.

That’s our son.

In addition to hallucinations, he became paranoid. Then the delusions came, and he heard messages in commercials on the TV. He would weep because he thought his teacher was zapping his thoughts. One of the hardest parts of watching our child descend into psychosis is the absolute disintegration of his language. He ranges from what they call "paucity of speech," meaning he is nearly non-verbal, to language that is called "disorganized" – a reflection of his thoughts, which themselves become disorganized, and words fall from his mouth like bruised fruit – damaged and hurting. Strings of words that are not connected or sounds that have the cadence of speech but mean nothing.

At school, he spiraled. His teachers didn’t know how to handle him. A school bus aide physically shut his mouth. Twice. He was suspended. We were encouraged to keep him home when his class would have a substitute. We begged for more support. We asked them to consider an alternative placement, a therapeutic school that could better care for him. Instead, one of the teachers they brought in to help “support” him grew so frustrated with him that she began to mock him, which she admitted to doing, ashamed, I think, of her behavior. To us, it was just more proof to us that they weren’t equipped for our son. My child ended up in the psychiatric ward that day, for his first hospitalization. She had been mocking him in the midst of a psychotic break.

We were able to get him the educational placement we wanted after that, because I let the school know I had called a lawyer, as well as the Office of Civil Rights. My fury and grief knew no bounds, but all I wanted was a better educational placement for him.

On the medical side of his treatment, we had access to med management, and that was it.  Psychiatry said we needed to be seen in neurology, and neurology told us we needed to be seen in psychiatry. No one wanted responsibility for his care. They wouldn't coordinate. Departments wouldn't collaborate. Beyond just medicating him, we were told we needed to find support within the community. And so we tried. We begged for support. For help. We banged on doors and screamed that he needed therapy, that we needed psychoeducation so we could best parent our little boy. We were told he was too young to have these symptoms. That he was too young to benefit from therapy. That this place wouldn’t see him until he was 13, 15, 17. No one told my child he was too young to be this sick.  

We qualified for services through Tri-County. But "qualifying" and "receiving" are two very different things, especially in this state. We've gone through three caseworkers. They ask us what we need. They take notes. They provide us with nothing. Repeat. We also receive services through the Kansas City Regional Office, which sent us to Special Needs of Ray County. They did help us sign up for Medicaid, which was a lifesaver, as we were often left holding the bills for services, even though we have “decent” private insurance. But when it comes to accessing other supports or services, well... Ray County asks us what we need. We tell them. They take notes. They never provide us with anything we need. Repeat. We filled out the paperwork for a Medicaid waiver that would help fund a personal care attendant, which would allow us to continue to work and support our family, while ensuring that our child was safely taken care of by a professional who had the needed skills. Special Needs of Ray County sat on the paperwork for 24 days. Then they submitted it. It was approved. But two days later, the state of Missouri froze waiver funding. Periodically, I call, but I was told that Missouri has actually decreased funding to the waivers that would allow us to have access to childcare. I had to quit my job because his school was all virtual. I applied for unemployment in October. I received it in February. In the meantime, I went back to work and it was my husband’s turn to stay at home, working weekends instead, so we could continue to make our bills. We made do with FMLA, taking stretches of unpaid leave, working opposite days, doing what we needed to do.

We’ve waited more than two years for funding that would allow us to hire a personal care attendant – someone who could work with our son on life skills, help him learn to navigate his world, and allow both parents to continue to earn the incomes he requires to get him access to help. We’ve waited more than two years, and there are still over 600 Missourians ahead of him on that waiver waitlist.

In the meantime, Tri-County has told us we could get better access to support through Special Needs of Ray County because his initial autism diagnosis qualifies him for services because he's developmentally delayed. Special Needs of Ray County believes he would be better served through Tri-County because he's mentally ill.

Our son was hospitalized again, this time, because his psychosis was so bad that he needed to have his meds adjusted in a hospital setting. We tried to avoid the emergency room because of COVID. I called around to the few pediatric facilities in the area, and they told us they had no beds. We took him to the emergency room because that’s often the only entry kids like him have to a facility. I held him and told him he was brave as the nurse called and called and called, trying to find a bed for him, only to be told that he was too severe for this facility or that facility, because they didn’t have the staff he needed to effectively and safely care for him. I held my child, who thought North Korea was targeting him, and was told that he was too sick to be hospitalized.

That sort of experience can break a parent. It broke me. I am weeping as I write this.

We took him to the Mayo Clinic in December, and he was diagnosed with pediatric schizophrenia. The doctors were shocked at the lack of support we had. That we had no respite. That we had not been able to find any therapeutic supports. His diagnosis was confirmed in March through the CASP Clinic at the University of Minnesota, which specializes in children with psychosis. The doctors there also expressed their shock over the lack of support in Missouri.

Our son has lost skills and cognition. The testing from Mayo shows losses of more than 45 percentile points in areas like processing speed and working memory. This is a hallmark of schizophrenia. These are skills he’s unlikely to regain. But these are areas that could have been less impacted, had we been able to find anyone willing to work with our child. Our son did not know he was too young to have schizophrenia. No one told him he needed to wait until he was 15. My son is sick, and he’s sicker because of a broken system that forced us to go to Minnesota to find answers.

 Do you know how awful it is, to know that your child’s decline, while part of his illness, was likely made much worse because you couldn’t find access to support that would have helped him? We take that to bed with us every night. And we wake up the reality of it every morning, as we again watch our child struggle to complete daily tasks that he had once mastered at age 6.

I thought that it might be easier to find doctors willing to treat him, once we had a diagnosis. I was wrong. Doctors still refused to treat him beyond med management.

About a month ago, he became incredibly symptomatic, and we knew he needed another in-patient med adjustment. They told us to take him to the emergency room. We did. But, once again, because he is such an acute case, there were no beds available for him. They checked him into the pediatric unit, and there we waited for more than 80 hours – 80 hours where my son was inundated by hallucinations and delusions, where his speech was so broken that he was only about 20% intelligible, 80 hours before, in despair, I found a substandard setting in Springfield that would take him. Once there, they decided to just stop his antipsychotic because they didn’t have it on hand and prescribed him Thorazine. When we found out, his daddy immediately drove down to get him. Our son vomited and shook on the way home, because taking him completely off a significant dose of an antipsychotic with no titration is dangerous, and it made him sick. Since then, we have kept him at home. Out of school. Quiet. Safe. He needs to be in a hospital, but there is no place safe to take him. His current doctor doesn't feel comfortable increasing or changing his meds because she's never had a child on a higher dosage than what he is at, and says he needs to be titrated in-patient but again – where?

It’s like knowing your sick child needs chemotherapy but the best anyone can do is offer aspirin.

The Systems of Care model laid out by the state of Missouri is not being implemented. There are no supports or services or programs for children with psychosis under the age of 15. The schools are not set up to handle or teach children like mine. Parents are not given access to respite. Hospitals and psychiatric facilities can refuse to take kids like mine because of lack of staffing. There are no intensive outpatient programs that would allow him to access the therapies and education he deserves.

Missouri has looked at my family and has told us, “Institutionalize him, or be poor.”

Neither is acceptable.

While lawmakers are apparently intent on making sure transgendered children aren’t allowed to play soccer, and throwing tantrums because they don’t want to fund Medicaid, children like mine are suffering. Families like mine are looking at the wreckage of a system in this state and deciding to leave… If they can. Others are not so lucky. We know that we are privileged to do so. We know we tackled every obstacle from a foundation privilege – that of education, and of income. From accessing what few services were available, to paying for testing and therapies out of pocket, to being able to take uncounted hours off to make appointments and take him to treatments and attend IEP meetings, to making the life-changing trip to Mayo and the University of Minnesota…

And deciding that it’s time to go, and being able to afford to do so.

But I promise you, there are families right now, in your state, who have none of that.

What a shame.

Sincerely,

Samantha Kilgore