A family’s trip through “the worst hellish nightmare you could ever have” and a system unprepared and unwilling to help.
By Vance Goforth
We begged for years for help to no avail. This is the story of our son Josh, who we adopted after he suffered severe abuse in infancy, and who has severe nonverbal autism, along with comorbid conditions like seizure disorder, cerebral palsy, bipolar and disruptive mood dysregulation disorder. He is now 18 years old.
The behaviors started in childhood. By eight years old, issues at school got progressively worse and he was put on home bound after they became so severe the school system couldn’t keep him safe anymore. We sought help through doctors and medications at first and then psychiatrists who recommended inpatient treatment ASAP. He was even accepted into a treatment facility only to be called the day before admission to be told that they couldn’t treat Josh because we owned a wheelchair and their facility wasn’t ADA compliant.
Everything started escalating during a trip to town a few years ago, Josh got upset and kicked out our van window and tried to crawl out at 55 miles per hour. I had to pull him back into our van and tried to keep him calm until we could get home. We decided to call a help number on my insurance card and see what they recommended. To our shock, they didn’t know what to do, so they called the Department of Children’s Services. DCS told us since this wasn’t an abuse case, if we didn’t see them in 48 hours then they weren’t coming. So there we were, making calls that no one knew what to do with and ended with us facing crisis level behaviors with no help.
The behaviors kept escalating and he was targeting our youngest daughter to the point that she was hiding daily from his outbursts. The nightmares really started as we began to call for help again. As we called crisis during these behaviors, we heard statements like, “We’re not prepared for a child as low functioning as your son,” or “If your son was suicidal then we could help.” Yet again, crisis responders would leave and we were dealing with the severe outbursts on our own.
We were advised multiple times to take Josh and “drop him off” at an ER department and let the state take custody. We were also told to get a divorce, because “it’s easier to get help if the parents are separated.” Needless to say, we didn’t want to call crisis after some of the interactions we had.
Finally, we kept begging for help and the Tennessee Department of Intellectual and Developmental Disabilities came to our home and told us they would find us help. DIDD couldn’t offer us anything until Josh turned 22, so they called and set up an appointment with Children’s Services. We were nervous about this because of the reaction we had before but we agreed to go to a meeting.
During this interview, we were asked why Josh was no longer welcome in our home. I explained that wasn’t the case, we just needed help desperately. They requested documents from us and I provided them and we never heard back from them. Joshua’s behaviors had become daily at this point and after two weeks, I called DIDD and asked why they told DCS that Josh was no longer welcome in our home. They said, “You don’t understand, if we didn’t report it that way, they will never help your family.” I was absolutely blown away after this, not only did we not get help, they never followed up on the situation and he was getting worse by the day.
DIDD finally made a referral for Joshua to get into a new state program called ECF choices in July 2016. He was accepted into this program and we were told he would get respite care, in-home services and other therapies and resources as needed. We thought yes! We’re finally getting help! But days turned into weeks and weeks into months. My wife was sending emails to our coordinator begging for help but the reoccurring theme was “no providers available.”
From 2016 to May 2017, the behaviors increased exponentially and had become very dangerous with severe aggression and self-injurious behaviors. In May of 2017, we still had not received the promised services and I was out of town for a conference when I received a call that Josh had a severe outburst and my wife had no choice but to call crisis again. This time crisis said that Josh needed help but couldn’t find any facilities that had open beds. He was extremely helpful but every path he tried was a dead end.
So he called DCS, and this did not go well for the situation. They came out while crisis was still at our home and began interviewing our other children on our back deck as they watched through the window as my wife was hit, slapped and kicked just trying to keep Josh from hurting himself. The crisis worker ended up apologizing for calling them because he said “I’ve never had an experience like this before,” and he couldn’t understand why the situation was being handled the way it was.
The social workers “watched through the window as my wife was hit, slapped and kicked just trying to keep Josh from hurting himself.”
After all of this, my wife and family were left alone with no help after he got his meds and took a nap. The next day our coordinator said to meet her at a Knoxville hospital and they would get Josh treatment. My wife and father had to self-transport Josh even though we had voiced concerns about severe outbursts he had while we were driving. When they arrived, we were yet again turned away and told that the hospital couldn’t provide treatment. Even though they would not treat Josh, they didn’t want my wife to leave with him over safety concerns. They also advised taking him to an ER and discussed relinquishing custody in order to get help.
Finally, they got Josh home and he was accepted to a hospital in Georgia the next day. Again, my family had to transport him because an ambulance service refused to do the transport due to his aggressive behaviors. He spent 12 days at this hospital and was sent home because “they witnessed no behaviors.” Four days later he was tearing our house apart and hurting himself severely. I made the call to get him back into the hospital but was informed, “it doesn’t work that way.” I was told he had to be turned down by every treatment facility in Tennessee, again. This process takes months and he was getting dangerously aggressive at this point.
We were provided with ABA therapy at this point and it didn’t take long for our therapist to see that Josh needed residential treatment and that was what they recommended. Our therapist eventually resigned and we didn’t get ABA after that. We finally received one-third of the in-home services that he was supposed to get in September 2017 and the behaviors kept increasing over the next few months. He had got so severe that he had broken several teeth and had done over $17,000 worth of damage to our home and vehicles.
My wife and I had become increasingly isolated from everyone around us during this time and we struggled to keep everyone from seeing how severe our son’s behaviors had become. We basically had confined ourselves in our home, taking turns trying to minimize the behaviors as much as we could all while being told that help is on the way.
I cannot even start to describe what life was like during December 2017 through February 12, 2018. The behaviors had reached a level that can only be described as the worst hellish nightmare you could ever have. To watch your child you love so much inflict so much harm upon himself is too much to bear. The strain this brings is indescribable and even that isn’t an accurate description.
“To watch your child you love so much inflict so much harm upon himself is too much to bear. “
The stress was building day by day and on February 2, 2018, the nightmares went into overdrive. We were coping the best we could and trying to keep life as semi-normal as we could for our other four children. On that day, my wife Kristy had stayed with Josh while I took our other son Camden to workouts. I was on my way home when I received the phone call. At first the call was totally indistinguishable from all the screaming that was taking place. My heart sank as I tried desperately to find out what was happening, then I figured out it was one of my daughters that had called and finally I heard “It’s Josh” through the screams.
It felt like a shock of electricity went through me before I went completely numb. I had no idea what was going on but I was trying desperately to just get home. I was crying and praying as I drove as fast as I could and Camden was crying hysterically and begging God to help his brother. I actually arrived before the first responders and as I ran in the house, Josh had just stopped having the most severe seizure we had ever witnessed. Kristy had called 911 when the seizure kept going to the point that Josh quit breathing and turned blue. He gasped for air and started breathing again just seconds before I arrived home.
Whatever happened during this seizure changed Josh and the behaviors became even more amplified than before. Over the next ten days, I can’t even say we were handling the outbursts because that would be a lie. The behaviors reached a fever pitch that ended with extensive injuries to myself and Josh.
Josh would bite his wrist until it was almost down to bone and began breaking all of his teeth off by hitting his head on the floor and walls, and hitting his hand while biting it. I was bitten over 50 times during three different outbursts and received lacerations, bruises and a severe black eye that may have caused permanent damage. Josh had extensive injuries from the self-injurious behaviors and was not calming down at all. We visited two different ER departments during these outbursts and mobile crisis was contacted twice. Mobile crisis never did the face to face evaluation that is required by state guidelines.
We took Josh back to his doctor the next morning after being in ER rooms all night and his doctor forced the issue and made crisis respond. Josh was eventually transferred after a three-day stay in another ER room but we had to get lawyers and judges involved just to get the treatment he needed. After a few weeks and multiple legal issues he was transferred from Georgia, where they had said before he wasn’t having issues, to South Carolina where they recognized the severity of the behaviors. He has been in treatment there for 14 months now.
When Josh finally received the needed treatment, he started slowly making progress. Springbrook has been amazing and not only treated our son but also encouraged and gave advice to the whole family. After 14 months of treatment, Josh is scheduled to be the first resident in a new experimental housing program in Tennessee. Hopefully he will be ready for this program within the next month or two.
Without naming organizations specifically, here are just a few things we have been told while seeking help for Joshua.
1) If your son was suicidal we could help, but since he is so low functioning we are unprepared for a child like Joshua.
2) Your best option may be to drop your son off at a emergency room. (Basically telling us to abandon him! Yes, this was really suggested to us and more than once!)
3) You’re approved for certain services but they aren’t available in your area.
4) Your behavior analyst quit and you will not have these services anymore because one isn’t available in your area now.
5) You can’t get the services you are requesting because your son is a minor.
6) You are approved for respite care but it’s not available to minors.
7) Your son can’t go into residential care because he is a minor.
8 ) You have 24 hours to pick up your son or you will be charged with abandonment. While another agency is telling you he can’t return home until he is treated and is stable.
9) Every facility in the state must deny admission for your son before you are eligible.
10) We can’t take your son because our facility is not ADA compliant.
11) We can’t take your son because this is not an abuse case.
12) If we separate or get divorced we might get priority for services for our son.
And the list goes on. Is everyone seeing the need for changes to the system yet? —VG
We were in pure survival mode for so long, we didn’t know how much all of this had affected our other children and family members. Joshua’s siblings love him dearly and were quietly trying to deal with the situation as they watched things that no child should have to ever witness. After Josh was in treatment a few weeks, they began to open up to us about everything and it hit us like a ton of bricks. We were so consumed by managing the behaviors and keeping everyone safe, that we didn’t realize how much the stress was affecting all of us. Slowly but surely, the kids began to heal from all of the trauma and we started seeing improvement in school and other activities.
After Josh finally got the treatment he needed, we created a Facebook page, A Voice for Joshua. I was determined that I would advocate for issues affecting individuals like Josh who have severe ASD and comorbid conditions. I’m not the most eloquent speaker and my posts are usually more solutions-oriented than other bloggers who can effectively pull on heartstrings, but I’m determined to keep advocating and sharing his story until needed changes take place.
Please join us in this journey and advocate for Josh and others who face desperate situations without appropriate resources and services.
Vance Goforth is the father of five who lives in Tennessee. You can find A Voice for Joshua at facebook.com/pg/changeforjosh