Our son returned home in June 2012 and immediately attended a basketball camp. It was summer with no school, so it was going to be a challenge keeping him busy. He had appointments with his old therapist, which achieved little to no outcome. He went on outings with his mentor and they started to bond over basketball. The Village counseling seemed to work pretty well and many family members started to open up and express their feelings. He attended a salamander camp and then we all had a good Fourth of July at the lake.
I wrapped up my job of training my replacement on base and got a call from our functional to see when my 5-level would be complete so they could deploy me; I had to inform her that I was retiring soon. Previously I had learned that if I took my 5 level CDC test, my boss would still not complete my training records to get my upgrade, so I had my commander remove me from training. Over the next few weeks our son started to exhibit anger and sadness, so we met with his medication doctor to discuss possible new medication. He attended a babysitter class, along with another visit to his mentor and a Village session. I then had my retirement ceremony on July 24, 2012, with my son pinning on my retirement pin. I would only stay in touch with my replacement, because my boss told him he saw no point in staying in touch with me since I was retired. Having to plan and conduct my own retirement ceremony was the final kick in the teeth on the way out the door, after serving over 20 years in the best Air Force in the world.
My son’s long time therapist closed out his care on July 26th and forwarded him to a occupational therapist, which worried me because Tricare was not too good about approving those types of therapies. The last thing the therapist told me was “good luck,” because in her words, kids that have what he has end up in jail or dead. From August 1-7 he went with his family to Detroit for a family reunion and had no issues on the trip. He then flew to South Caroline to stay with his grandparents. There were a few issues on the vacation, mostly clashing with his grandmother. During the vacation he had a migraine and saw lines in his vision, so we made an optometry appointment. He didn’t participate much during the next two Village sessions, and then on August 23 he bit his dentist at an appointment when he was getting sealants. The dentist had some nasty things to say and banned him from his practice. On August 31st he had a shutdown at his eye appointment when he wouldn’t let them put drops in his eyes, it last an hour.
He started the 6th grade and we had a team meeting to prepare for the year. He started to have shutdowns at home, sometimes hitting his head during them and not talking or moving for hours. By the end of August he was starting to refuse to go to school and also refusing to brush his teeth or take showers. He attended another mentor outing and Village session, then on September 3rd he got upset and started breaking things in his room, so I subdued him. He battled the hold for 45 minutes and tried to go for a bb gun to shoot me. He was getting in trouble at home for hurting his younger brother and cried sometimes at school. He was always upset and claimed that things were unfair with his younger brother. He was in a classroom for one period a day for special education development and on September 10th he completely destroyed his classroom and fled school grounds. I had to call the police and ambulance escort, as I was well versed in this routine by now. That episode ended up with him back in the local psychiatric ward, where the doctor indicated he would only keep him one day, although insurance approved seven.
The in home therapy went from bad to worse, with him punching a hole in the door on one occasion. Through his provider on base, we were able to take him out of town for full workups in cardiology and neurology. One test was an EEG, which required us to stay up and not sleep until after the appointment the next day at 10:00am. We walked around Wal-Mart all night and they hooked up all the wires the next day, while I slept in the waiting room. Luckily all testing turned up clear, which was good in that we could rule out physical abnormalities. At this point he only had Tricare, as blue cross and blue shield had ended. They had paid for over $250,000 in care for my son and I was very thankful for them. At this point I had to come up with another plan B. There was a local boys and girls ranch, but the nearest Tricare approved facility was over 700 miles away in Montana. I started the process of having his doctor draw up yet another referral after talking to his medicine doctor and conferring with his previous therapist.
He struggled in school and kept his hood over his head most days. He was failing most classes and some days refused to even get out of bed for school. He was absent so much; the school forwarded the case the juvenile system. At that point I welcomed a record on him, as that would open the door to services in town. The next month was filled with good and bad days, with random crying spells. We had set up weekly visits from his younger brother and they seemed to help. The Village closed out the therapy, which sadly did not achieve much success. He attended some occupational therapy, but that did not help much, either. He continued to bond well will his mentor who got him into collecting basketball cards. I was going through Tricare issues, because they still had them on blue cross blue shield in the system. Luckily our neighbor worked in the office and was able to fix the mistake. He continued to get suspended from school, once for cursing at the teacher and another time for putting wrong name on test. He was on a bowling league for a while, but anytime he got a gutter ball he would shut down, so he quit. Around this time a Tricare case manager finally called me and suggested a center in Texas. I was not about to have my son over 1,000 miles away.
We decided on the center around 700 miles away instead and they indicated they may have a bed coming open soon. The referral was still in the Tricare system, but I had confidence they would approve it, as all the previous care he received was while under blue cross and blue shield. At the end of October things got worse at home and at school. He was refusing to attend school and we had a school meeting to consider other options for school other than public. I worked with a nurse from EFMP on base, the only one to ever care about us, and I drove with my son on September 20th to an Air Force base close to the center, over 600 miles from our home. I was desperate and out of any other options. For the next four days we hung out at the gym and in billeting. I never received any call from Tricare, so I called them and a lady told me that they were considering him a chronic case and he was in fact denied. The denial said it was not a Tricare benefit that was available to me. This was the lowest point I had ever been at and if I died right there, that would have been okay with me.
To make matters worse, the base would not pay for the medical TDY since the referral was denied. I sent in an appeal to the Triwest Healthcare Alliance and on October 16th received a ten-page denial signed by the Behavioral Health Medical Director, Northwest Operations. At this point I stopped caring altogether and simply prayed for an answer. I moved my son to a new medication doctor and he kept struggling in school and skipped days, but they knew I had no other options. I pulled out the denial and read through it one final time and saw I had one Hail Mary left. I faxed in a crudely written appeal to KePro, who was the final appeal authority above Triwest Healthcare Alliance. I simply wrote the letter asking whoever read it to spare my son’s life and approve treatment. I disagreed that he was chronic and on October 24th I received a miracle in the mail. The letter from the Operations Director, Tricare Quality Monitoring Contractor, was six pages and quoted from various code of federal regulations. At the end of the packet it stated that residential treatment was necessary and appropriate and the denial was in fact reversed.
The good news was that his treatment was approved, the bad news was all the beds were filled and they had a water pipe burst, so any opening was in doubt. Luckily on the 29th I received a call saying they had reorganized a floor and a bed had come open. We drove back to the center the next day and he was admitted to the treatment center on Halloween. We met with all the new doctors and therapists and during intake the doctor asked him to remember a list of items, then we talked for another half hour. At that time, she asked him to list the items and I was shocked that he did, even the doctor said that not many children were capable of that. It was his behavior and medical condition that was impeding his education, not ability. I left that afternoon and got home after midnight, fully missing my other children’s trick or treating adventures.
I was still technically on active duty (Terminal Leave), so there would be no co-pays, but the Tricare case manager advised me to be aware of a worst case scenario where I would pay a co-pay of $24 a day and the max would be resetting again at the beginning of the year. She mentioned that because he went in while I was active there was a chance it would continue without co-pays. Shortly after that call, I never heard from her again, as she was moving jobs to the new healthcare provider that Tricare had selected. I was busy back at my base preparing for the switch to Tricare Retired, changing to Tricare Dental and other various things required when you retire from the Air Force. It was now November and for the first time in awhile I could breathe again, at least until the calls started to come from the new center. Later on December 1, 2012, I switched to Tricare Retired and had to start paying $40 per day. Then on January 1st I had to start paying a new $3000 max, but the good news was they would pay the rest, which amounted to about $20,000 a month in medical bills.
He spent the next three months in the center and was moved to new medications. He was on lamictal, seroquel and intuniv, fish oil and a multi vitamin. Tricare required weekly therapy, so I lined up a therapist from the Village and every week we called the therapist in his new center and conducted joint therapy on conference calls. Through the base medical group, I was able to go on monthly visits, even via flights over the winter. The rules were much stricter than they had been at other centers and he was only able to have day passes. Some visits we went to the movies, another time we went skiing, but it ended in frustration as he cried and punched the snow. His new therapist suggested we read the book, “The Explosive Child” and it was very enlightening. It was very eye opening to understand what’s going on in the mind of someone with behavioral heath issues. The overall concept was that kids would do well if they could and also talk about how to pick up on signs to better communicate with your child. You see, you need to sometimes think as irrationally as the patient to understand the real rational thoughts behind them. There were times while in treatment where they actually had to discharge him and send him to the hospital. He missed all the holidays with the family and we missed him greatly. I was able to visit him on Christmas week and we celebrated the holiday and his twelfth birthday. I was the only one to ever visit him in the center, but towards the end of his stay we set up a new intensive in-home therapy with a young guy at the Village and he joined in on the final phone calls. Even with all the ups and downs while at Shodair, he was discharged on Jan 31, 2013, a mere three months after admission and we were all scared to death of what was to come.
This series concludes April 24th with “Part 5: The New Normal.”
Steven Mayne is a retired Air Force Master Sergeant. He welcomes reactions to this story both in the comment section and via email at firstname.lastname@example.org.