Wednesday, June 27, 2018

A Glimpse of the Avalanche

Yesterday I was blessed to meet another special needs mom as we both waited for our boys to be finished with camp for the day.  Her son is around the same age as my oldest.  We talked about the struggles of having a child who is legally adult but in no way ready to "adult" on their own.   There is a bond, an affinity, between special needs parents that is hard to explain. Whatever our race, creed or politics, it doesn't matter.  We share a commonality in our daily life experiences that few can comprehend, much less understand. So we sat and commiserated for close to two hours, both of us ignoring the work we had brought to accomplish while waiting.
  I felt a distant rumble as I walked away from that conversation.  It felt like the start of an avalanche, high in the mountains above, as you stand in the valley below.  You stand in the warm spring air, the sun shining upon you, knowing that if you don't take emergency measures NOW you will be buried under tons of snow and ice.  You start shouting and running, trying to warn everyone surrounding you of the frozen fury that is about to rain down upon them. But they look at the green grass and blooming flowers, feel the warmth of the sun and shake their heads.  You are Chicken Little crying"The sky is falling".  You point out the distant rumble that is getting closer every minute. They laugh and say it's just a train going by.
So you do your best to fortify what you can and try to save your family.   But there has never been an avalanche in this valley.  There is no evacuation route. There are no shelters. You furiously start throwing together what you can with the limited time and resources that you have. Off in the distance, you see a person here or there doing the same as you are.  You know if you could combine resources you would all have a better chance of survival.  But there is no time.  So you nod at each other, offer a slight wave and continue with your own preparations.  All the while the rumble is getting closer and it is picking up speed.

There is an avalanche coming to your community and it is coming quickly. My oldest was diagnosed at the forefront of the huge increase of ASD diagnoses. We could spend all day today and tomorrow discussing the WHY's of it all. But really the why doesn't matter at this point because the results are the same. In 1992 1 child in 150 was diagnosed as autistic, by 2006 that number was 1 child in 59 (statistics by the CDC Children born in 2000, when we just starting to see the rise in diagnosis, turn 18 this year. They become legal adults.  However many, like my oldest, are not capable of being independent yet.  Legally, we as parents lose the ability to manage their medical and psychological needs, to help them navigate the legal world, to have a much needed voice in their education.  Many of the services they currently receive they will age out of when they hit the magical 18 year mark.  We as parents have the choice to get partial guardianship (a complicated and hard process), sue our own child for full guardianship (which is an expensive and heart wrenching experience) or just throw them on the mercies of the very ill prepared system.

Many of you are reading this and are thinking "That's sad but it doesn't affect me or my family.  I've got my own crap going on."  Oh my friend, you could not be more wrong!! There is an avalanche coming for you and there is no place for us to direct it.
The U.S. cost of autism over the lifespan is about $2.4 million for a person with an intellectual disability, or $1.4 million for a person without intellectual disability.

-35 percent of young adults (ages 19-23) with autism have not had a job or received postgraduate education after leaving high school.
-It costs more than $8,600 extra per year to educate a student with autism.  (The average cost of educating a student is about $12,000)
-In June 2014, only 19.3 percent of people with disabilities in the U.S. were participating in the labor force – working or seeking work. Of those, 12.9 percent were unemployed, meaning only 16.8 percent of the population with disabilities was employed. (By contrast, 69.3 percent of people without disabilities were in the labor force, and 65 percent of the population without disabilities was employed.) (all statistics compiled by the Autism Society

For the last 18 years, we parents have absorbed much of the cost of caring for, treating and getting therapy for these kids.  We  have 5 kids with disabilities in our family.  Even with that large number of diagnosed dependents, we did not receive a single dime of public assistance, with the exception of services provided by the public schools, until 4 months ago.  Now we are only getting help because some amazing people found loopholes to get my kids further services that they desperately needed but we could in no way do on our own.  I am not complaining.  I don't begrudge my children the care they needed.  We are parents. We simply did what good parents everywhere do, made it work for the sake of our kids.  However, all those very needed therapies, interventions, etc we pursued for our children, on our private insurance or simply out of pocket, quickly begin to go away when they turn 18.  Unless a plan is in place, our kids will lose all those services that make them as functional as they currently are.  Without the necessary support, our kids begin to spiral out of control and we don't have the legal authority to step in to help. Quickly those young adults become a burden on the already  dysfunctional mental health and legal systems.  YOU, the taxpayer, will pick up a much more expensive tab because nothing was in place to help these kids transition into adulthood safely.  The incredibly frustrating and heart breaking  part of this is that the entire spiral is completely avoidable!! Keep in mind, we aren't talking about a couple of kids here or there.  We are talking about 1 in 59 kids all coming of age within a few years of one another!!! That is a huge strain on an unprepared and at times willfully ignorant system.
"How can we prepare?" you ask.  Write your legislatures! Demand that they begin to fund transition services for special needs kids coming of age. We need educational outreaches for the parents of these kids. The process of getting any kind of guardianship is confusing.  Setting up trusts for your kids future is extremely complicated, time consuming and expensive.  Ask lawmakers to stream line the process for parents to get partial guardianship of their disabled children.  Volunteer to be a mentor for a teen with special needs.  Donate time or money to the underfunded, private organizations that struggling to give services to the multitudes coming their way. There is an avalanche coming your way. We few advocates are not enough to stop it from crushing not only our kids but also the entire system.

Sunday, June 3, 2018

A Glimpse of the Cuckoo's Nest

There are moments in time or things we experience that have the power to change us forever, to define us, and bring clarity to our callings. Such a moment happened to me two weeks ago amid a family crisis. It was one of the most heartbreaking, shocking, and enervating experiences ever. It broke me in the best way possible. 

 I write this today because most of you will never have the chance to experience this moment. Most of you will never see the reality with your own two eyes. Most of you will only get the sanitized version from the news or a story you read online.   You will never be privileged to see the truth or have your heart broken and your protective instincts fired. Even after reading this, most of you will return to your sheltered existence. Choosing to believe the experiences and sights I am about to share with you could not possibly be as bad as what I am going to portray, and even if they are..... well, those people had it coming. 

 I know this little blog post will have little impact on the grand scheme of things. However, I would betray everything I stood for if I did not speak out. If I did not use what little voice I have to scream from the rooftops how broken and dangerous our mental health system is.

Here's my story. I swear to you, not a stroke of this keyboard is an exaggeration or manipulation of what I have witnessed.   Sit back and read this with an open heart and mind. If we don't make changes immediately, I fear for the future of our most vulnerable children.

During the past month, my youngest son's behaviors had started to spiral again, and he was experiencing side effects from one of his medications. His psychiatrist advised that we change his medication under his supervision; he referred him to the children's hospital for PHP (partial hospitalization program). He was to go to the program 8 hours a day for observation during the med changes and therapy.   It took two weeks after the doctor wrote the order for the program to have a slot open for B.

On the first day of the program, we grabbed breakfast and started bright and early. B was happy and chattering the entire hour and fifteen-minute drive to the hospital. We arrived and were led to a private room by a hospital therapist to answer the intake questions. There had been a breakdown in their system; had they done things correctly, they would have seen he had been a patient in their facility in September, and PHP was ordered by one of their doctors. If any of these facts had been communicated as they should have been, we would not have had to repeat the entire intake process, and the rest of this story would not have happened. But as is often the case in our healthcare system, there was a breakdown in essential communication between coordinating facilities. 

If you have never done intake for psychiatric purposes, it is a little more time-consuming than intake for your typical ER or hospital visit. You must answer many questions concerning your mental state, thoughts, home life, etc. It can be overwhelming to anyone. 

The process is especially challenging for my youngest son, who struggles to discuss anything emotionally without breaking down on his best days. Because he was there primarily to change his medication protocol, I had not given him his medication either. He needed to see the doctor and start his new regiment. My son started working up within two minutes of beginning the intake process. Within five minutes, he was in a full-blown meltdown.

For those who don't know what a total meltdown looks like, imagine a 250-pound, five-foot-nine teenager screaming, hitting his head on the wall, scratching his arms, trying to run off, and swearing at the doctors and security officers. To be clear, this is not a choice. He isn't "acting out." His brain is so over-stimulated that his logical thinking process has stopped. He doesn't even remember what happens during these episodes once he has come out of them.

 We gave him medication, hoping to calm him enough to complete the intake. Instead, he worked up even further. The therapist apologized because there was no way to admit him to PHP in this mental state ( an obvious conclusion we all agreed upon). He needed to be placed in inpatient. It took two armed security guards to escort us to the "special" ER ( as I call it). We were in a room with a bed (with restraint hooks) attached to the floor,  a single chair made of the same material as the bed, and NOTHING else. 

A doctor quickly examined him and ordered the therapist to find him a pediatric bed at one of the area hospitals. Though we were already at the hospital, it was the children's hospital. They do not take children over 12 in their behavioral (psychiatric) ward. My son melted down for two hours, even after being given medication to calm him.   We spent the next eight hours waiting as the hospital called every behavioral hospital with a teen ward in the area, looking for a bed for my son. We live between two major cities (Dallas and Fort Worth). More than a dozen behavioral hospital wards and hospitals in our area matched the needed criteria (most of which I would not recommend, but we will get to that later). It still took eight hours to find a single pediatric bed. This is not unusual. It is normal for people to be turned away from the hospitals when they seek help for their kids because no beds are available. This is also a problem for the adult population. But for this article, we are focusing on the pediatric aspects of the mental health system.

 After waiting hours, they found him a bed at Dallas Behavioral Health in DeSoto, Texas. We have been dealing with our kids' mental health issues for a while now, meaning we have a working knowledge of the hospitals in our area. I had heard some questionable things about this particular hospital. When I told my husband where they wanted to send B, his initial reaction was the same as mine, no way! But we had already spent eight hours in the ER with the therapist calling and re-calling every hospital looking for a bed. This bed was literally the ONLY bed available in all of North Texas. My husband did what research he could online. He found that the hospital had improved its facilities and recently won a few awards for its behavioral unit. So with reluctance and no other options, B was assigned the bed. It was voluntary, but they would have admitted him under the Baker Act (non-voluntary admission) if I had not cooperated. That would have severely limited my control in making medical decisions for my son. So though we had a choice, we didn't have one.

We waited for the ambulance to take us the hour and a half to Dallas Behavioral in DFW rush hour traffic. The entire ride, B was chatting away, asking questions about all the equipment in the ambulance. The paramedic asked me twice if he had received the correct transfer paperwork? Was B actually supposed to be transferred to DBH? Yes, I assured him the paperwork was correct.


We exited the ambulance into a different world from the one we left. Because B had been labeled a flight risk during his earlier attempts while melting down, we were sent to the locked flight risk intake ward. Before I begin, let me say I have gone through intake with my kids on many occasions. As a missionary and parent, I have visited the behavioral ward of different hospitals in many states. This was not my first rodeo, and I am not easily shocked. However, this intake waiting area managed to shock and horrify even me. I will try to capture the experience, but I don't think even I can do justice to the absolute chaos that assaulted us as we were ushered through the large locked doors.

The first thing I noticed when walking in was the smell. The pungent odor is not new to me. I spent years doing homeless ministry. I lived above a homeless mission and worked there full-time for my college internship. The smell of un-bathed, inebriated individuals with dirty clothes and no access to hygiene products is not new to me. It was, however, new to my son. He immediately asked why it stank. Milling around the narrow halls were adults waiting to be admitted. Some were rocking, others were screaming, and one lady kept trying to remove her shirt and have everyone feel her stomach and "baby."  She would start screeching and yelling if you did not acknowledge her imaginary baby. She was demanding to leave so she could have her "baby." 

Around five police officers crowded the narrow hallway as they brought in two patients. One patient was a young teen girl ( I later learned she was 12). She had handcuffs over bandages where she had attempted to cut her wrists and was held between two large, muscular officers. Several of the male patients tried to touch her or engage her. I was grateful to one officer for keeping them at bay while he was there. Of course, he left as soon as he signed the admission papers.

 To our right was a large waiting room with more adult patients waiting to be admitted. They were sprawled across chairs and on the floor. Some had blankets; others just sat on the floor talking to themselves. They wandered the halls freely, with no visible supervision. 

To our left was a room with teenagers. Adult patients kept wandering in and out, even though the nurse would kick them out of the room the few times she walked past the door. Most of the teens were unaccompanied, brought in by law enforcement. B and I were instructed to stay in the cramped, loud, and poorly monitored hallway until the staff could "get to us."  They dealt with the patients brought in by the police. B kept pushing himself between the wall and me, scared. He didn't know what to make of the chaos that surrounded us.

 Finally, they called his name. It was our turn to meet with the admission nurse. Our belongings were locked in a locker (standard procedure at every psychiatric hospital), and we were patted down and scanned with a metal detector wand. I was surprised when they told me to bring B to the teen room. After standing in the hallway for over an hour, I thought we would be doing the admissions paperwork. But instead, we were being shuffled off to yet another waiting area. When I asked what was going on, I was told I could leave if I wanted. I did not want to leave. At this point, I wasn't sure if I would leave him at the hospital, the Baker Act be damned!

 As we waited several hours, more patients were brought in by the police or nurses. Some were loud. Some looked high; others looked utterly beaten down by life.   Some were violent. One began beating on the doors with so much strength he shook the entire ward. The teens were terrified. One girl looked at me and asked if he could break the glass windows of our room. I assured her we were safe and that security would deal with him. After twenty minutes of the nurses ignoring him and his behavior, they finally called security. However, security took nearly 10 minutes to show up after they were paged.

 One adult patient kept stripping naked over and over again. They would barely get clothes back on him, and he would take them off again. Having autistic kids, I understood his behavior. But it made the teen girls very uncomfortable to have a large adult male wandering around completely nude.

 While this happened, the teens were unprotected in an unlocked room with adult patients wandering in and out. When the nurse returned, I asked that the door be locked to protect the kids. She only complied after demanding to know who I was. I explained I was a parent and knew that teens should be separated and protected from the general adult population by law.

During our wait, I talked with the kids who were there. They were dying to be listened to. Most of them had been in inpatient before and began comparing the facilities with good food, the best staff, and places with the best therapist. 

One thin boy with the saddest eyes I've ever seen told how he had been a patient at a different facility over the Easter holiday. The nurses had sneaked patients Easter candy, and a kind doctor had ordered the entire teen ward pizzas for dinner that night. He said he had asked to be brought back to that facility when he had been removed from school by police in handcuffs because he had been overheard threatening to hurt himself. The sad boy explained that was the only facility where he had made progress because the staff cared. But the officers said it was too far, and they could only bring him to DBH.

As I sat there listening, my heart was broken over and over. The beautiful girl brought in by law enforcement in cuffs with her wrists bandaged began to talk to me. She had just been released from inpatient two days before. She had tried to slit her wrists again, so she was brought back in handcuffs after they bandaged her wrists. It is just standard procedure to handcuff our youth. So common, in fact, the kids were all comparing their cuff bruises while we waited. Most of the teens had been waiting 6-8 hours for a bed. They were not given food or even water the entire time they waited. To get to the bathroom, they had to wade through the sea of adult patients wandering the halls without supervision.

After three more hours, we were finally admitted. So for those of you keeping count, we drove an hour to the PHP program, waited eight hours for a bed to become available, and drove an hour and a half to the hospital. Then we stayed in the hallway for an hour and waited three more hours to be admitted. And we were "rushed" because he was transferred from another hospital, and I was making waves about the lack of proper security or supervision for the kids who were alone with adult mental patients.

Once I looked over the ward where B would stay (well, what I could see of it from where I was told to stand), I was reassured that he would be completely separate from the adult population while on the teen floor. I signed the last of the paperwork. They did a complete physical exam of B (again, standard procedure for psychiatric wards), documenting any scratches, rashes, bruises, etc. They skipped any more intrusive exams because of his autism. I am grateful for that. He would have been even more traumatized if they had done a rectal exam.

B was there for eight days with limited visitation and phone calls. Their doctors balanced his meds, which with B is no small feat. However, the teens were allowed to put whatever they wanted on the TV after therapy. They chose horror movies. My son had never been exposed to graphic horror movies before his time there and has had nightmares since returning. I don't understand how it is healthy for teens in a mental facility for self-harm or violence to be exposed to violent, gory, rated-R movies with full nudity at the hospital that is supposed to be treating them. The people on duty would watch the movies with the kids, so they knew what was being played.

Eight days later, B came home. The doctors had been able to balance his medications, but the hospital experience was traumatizing to him. 

I sleep haunted by the faces of the kids I waited in the intake waiting room with. So many of these kids were traumatized by things and situations in their lives. They are crying out for help. Our solution to that trauma as a society is to slap cuffs on them and stick them in an unsafe and traumatizing waiting area alone. Then we admit them to hospitals with little supervision, drug them and send them back to the environments that traumatized them, to begin with, in many cases.   Kids have died in mental hospitals in our area.

We have a national mental health crisis with our young people today. You only have to turn on the news to know I speak the truth. How can we help them if the institutions meant to help are so overcrowded that it takes nine hours to find one bed in a vast metropolitan area ( and we were lucky to find that one, I was told repeatedly)? How can we help them when they are dropped into traumatizing situations like I described, with no one to advocate for them while waiting? How can we help them if, while they are in the hospital, they are exposed to more violence, gore, and sexualization?

Some of you think this does not affect you, so why should you care? Or maybe you think those kids have it coming to them because they wouldn't be in this situation had they not earned it. You are wrong. How many school shootings and mass public attacks will it take before we as a nation wake up to the mental health crisis we face? 

 I want to be clear that most people who suffer from mental health problems are not violent (someone with a diagnosed mental illness commits only 3% of violent crimes).   You may be lucky. Maybe you or someone you love is not affected by mental illness. However insulated you think you are, let me assure you that you know someone that struggles with mental health issues. According to NIMH (National Institute of Mental Health), 1 in 5 adults has a mental illness. That is 20% of the adult population. Of those, only half receive ANY treatment at all. I included a link to NAMI's statistics on pediatric mental health issues here. I encourage you to click the link. There is a lot of important information there.

This is a very long article, but I wanted to share our experiences. We need to change our mental health care system in this country. The only way those changes will happen is if we demand them. The only way we can demand them is if we know the actual state of the mental health care system in our country. Unfortunately, many people in our society who need things to change the most cannot advocate for themselves. So we must be their voices. 

 I reported our experiences to the hospital and, more importantly, our insurance company. I am writing this blog. I purposely did not obfuscate the institution we visited because I want to see changes. I demand better for the most vulnerable members of our society.

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