I included this not so much for those who have walked the journey with us, but more for future generations--to help them understand that we all did the best we could with the resources and knowledge that we had at the time--including Ben, us as parents, and the many helpers which surrounded us. I believe in the future we will learn the actual biological processes which lead to schizophrenia (at least some fraction of what we call schizophrenia since I believe there are many different processes and illnesses lumped together at this point.) and our treatments will become more humane and life affirming rather than filled with stigma and losses.
FINDING HELP WHEN YOUR CHILD IS EIGHTEEN!
On July 1st, 1971, the 26th Amendment to the U.S.
Constitution was ratified, lowering the voting age from 21 to 18. This shift,
which did not rely on scientific or medical definitions of adulthood, reflected
societal changes. The same decade saw states follow suit, lowering the age of
majority for legal purposes to 18. This significant change would later become
very real for my family as we sought help for our 18-year-old son.
With our son- Ben’s permission, I am going to share a
snapshot of our journey trying to get help for him in 2007, and then Dr.
Grey will talk about that transition from adolescence to adult care, from a
professional’s point of view.
And while our story was a bit messy, I want to say that he
and we are the lucky ones. We didn’t
know what was going on, but we did have advantages from the start—our son as he
began experiencing things he didn’t understand, retreated to our home; he
didn’t use alcohol or drugs; we had excellent insurance and financial
resources; and we had a great family nurse practitioner. I graduated in
psychology and had a master’s degree in school psychology many years before.
During college, I had worked a year in a psychiatric hospital for children and
adolescents. We had a stable marriage and a great support network. Another
advantage we had is that we had a younger child with Down syndrome and I spent
her lifetime advocating for her and her needs.
Being an advocate became critical as we started this road with Ben. We
didn’t know what was happening, but we started with confidence that we could
find help for our son.
Ben experienced early symptoms during the latter part of his
junior year of high school. When we saw his increasing anxiety and more rigid
thinking, we offered for him to see a counselor, but he was not
interested. It didn’t make sense to
“force” him. He was still functioning.
He was a good kid, getting good grades, working a part time job, and
involved with friends and his Church group. But in the second term of his
senior year, he began to disintegrate. Some days he went to school, but other
days, he couldn’t make himself go. He stopped doing anything else outside our
house.
In mid-December, I finally insisted that he either go to
school or go see our family doctor to discuss why he was missing so much
school. That led to a 45-minute
appointment with our nurse practitioner. We left with a referral to a
psychiatrist on our insurance list for the middle of June—six months away, and
instructions to take him to an ER as soon as possible—for anything remotely
like him being a threat to himself or others. He reiterated that we did not
want to wait until June.
Things continued to deteriorate. A couple of times, we found
Ben outside in the freezing cold, pacing around the yard with a broomstick on
his shoulder, convinced that our neighbors were trying to harm our family. On
another occasion, he covered the windows in the basement with newspaper to
"keep the evil out." His thoughts and conversations were consumed
with the battle between good and evil, and rituals to "keep safe"
became part of his routine, including spending an hour reading scriptures each
morning before school.
I spent the first part of January on the phone. First with our insurance—trying to get an
earlier appointment with a psychiatrist-no luck. I talked to someone at UNI-now the
Huntsman-- about the best approach to make sure our son was admitted there. I shared that our desire was for him to be
admitted on the adolescent unit, which she first replied was not possible since
he was 18. Even in my limited experience with in-patient units, I knew that my
son, still a senior in high school, and very sick, would not do well in an
adult unit. As we talked, she told me that the only way to do it was for us to
get guardianship of him. We couldn’t get guardianship prior to the hospital
admittance, but they would give us 48 hours for us to secure that. Under that condition, they could admit him
into the adolescent unit. We then
reached out to a neighbor who was a family law attorney to figure out what the
legal and financial procedures were. And
we waited……
Can you hear me—trying to get all of the ducks in a row…in
the middle of a hurricane?
The moment came on a Friday morning, when our son arrived
home around 11:00 am from school and proceeded to tell us a convoluted tale
about a car following him from the high school. After he calmed down, he headed
down to his room while we worried—that is what parents do. Later, I headed down to check on him and
found him staring out a basement window across the street. When I asked him what he was doing, he said,
“I may have to kill those people because they are planning on hurting our
family.” I reminded him they were all at work or school and that he could rest
now. After he got in his bed, I went upstairs to my husband and said—"Good
news—he has made a threat!” Isn’t that
terrible that my first response was relief, because now I might be able to get
my son help? Now our son was a calm and
peaceful sort of person and even in that moment of time, there was no agitation
or violence in him. I didn’t worry that
he would harm anyone BUT the words were like the “magic ticket”, so we moved
into action.
I called UNI and spoke again to the admissions office. They had no beds on the adolescent unit but
were expecting two or three discharges that weekend. She suggested that I checked
with them every 4 hours. Saturday afternoon,
UNI reported that they had a bed, and they would hold it for Ben, but we needed
to head to the ER immediately.
We invited Ben to go get ice cream with us. As we got on the
freeway heading to Salt Lake, he began to sense that something was going on and
tried to get out of the car. Thank heavens for child proof locks! However, by
the time we reached the U of U’s ER, he walked in with us with no difficulty. He
performed flawlessly with the first two doctors who interviewed him. He didn’t deny what he said, but said he was
just kidding. Both doctors cleared him
to be discharged. I refused—insisting
that he be assessed by a social worker or another mental health professional. The doctors were not happy but agreed. The first few minutes with the social worker were
the same, but as she began asking more difficult questions, his paranoia became
apparent. She made the arrangements to
transport Ben by ambulance from the U of U ER to UNI. And our beloved son was
taken—separated from us, beginning a journey we all never expected to be
on. It was about 4 hours later in the
waiting room at UNI, that a doctor came down and told us that Ben was very afraid,
but had settled down for the night. He
said, “We don’t know yet what is wrong, but your son is very sick. And you did the right thing in getting him
here…..and don’t forget you need to get guardianship by Monday.”
We called our attorney friend to arrange the petition early
Sunday morning. And Monday morning, we were sitting in front of a judge asking
for guardianship to maintain Ben’s placement.
The judge was clearly very unhappy about it, but gave us 7 days and a
demand that if we wished to continue it, our son would need to appear in court
himself.
A week later, a sedated Ben was transported from UNI to the
Davis County Courthouse so that we could request to continue guardianship so he
could stay on the adolescent unit. In this court hearing as in the first one,
our son had to be represented by his own attorney. Another close neighbor who was a divorce
attorney and a Church leader who had worked closely with our son represented
him. The judge, still quite hostile to this whole situation, said to my
son—“You are 18—an adult. Why do you
want your parents to take back control of you?”
Ben, who had hardly spoken since entering UNI, sat up and clearly
stated, “I am sicker than I have ever been in my life. Why wouldn’t I want my parents to help take
care of me.”
As a side note, we did return to court 6 months later to try
to extend that guardianship, but the judge absolutely refused telling our son
that he was an adult and he needed to learn to manage his health himself. Here
was a judge who clearly didn’t understand severe mental illnesses and the
systems and barriers surrounding getting him care.
During his stay, Ben was diagnosed with schizophrenia and
started his first antipsychotic. Upon discharge, he was followed up by a
provider at the U of U clinic as we waited still for that June appointment with
our insurance psychiatrist. We went to
that appointment but discovered that he had little experience with individuals
with schizophrenia, so we returned to the U of U clinic and self-paid for the
next five years until we folded all of his care into Davis Behavioral Health.
Lessons Learned
- Support Early Psychosis Treatment
Centers: We strongly believe in the importance of early psychosis treatment
centers that are open to everyone, regardless of insurance status. The
sooner a person can get help, the better the long-term prognosis.
- Educate Providers: We need to ensure that all
health professionals—pediatricians, school counselors, family doctors,
even law enforcement—are educated about available resources for early
intervention and mental health support. These clinics should be as visible
as suicide prevention campaigns.
- Make Guardianship Accessible: In times of crisis, guardianship
should be a straightforward process. While we had the resources and the
people to navigate the legal and financial hurdles, many families don’t.
We need to find ways to support parents in securing guardianship when
their adult children are unable to care for themselves.
- Mental Illness and Homelessness: As society grapples with these
issues, it’s essential to remember that these individuals are human
beings—someone’s son, daughter, or sibling. Support for families is
critical for helping those struggling with mental illness, particularly
when they don’t recognize their own need for care and they are in crisis.
I want to end with an incident that happened a month before our son was hospitalized for the first time. The doorbell rang and I answered it to find my son’s best friend standing on our porch with a plate of cookies. He said shyly, “I haven’t seen Ben around anymore and I know he isn’t doing well. I didn’t know what to do so I asked my mom to make him a plate of cookies.” It was a simple moment—and a plate of cookies didn’t fix anything, but it stood and stands as a beacon to me—we are not alone, people cared about Ben and about us—It is terrible to be living with these severe brain disorders, and it can feel impossible sometimes to care for someone with one. We as a society need to do better to help those impacted and the families who love them. Thank you.
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