Hospitalization #4, Days 1-3

I’m so sorry I haven’t updated in so long. As you can probably imagine, doing the medwash at home has made for a difficult few weeks. We were able to get Javan down from four heavy psychiatric medications and a sleep aid to one medium weight psychiatric medication (Latuda) and the sleep aid. At that point, things were beginning to get too difficult and we agreed with his psychiatrist to keep him on the Latuda and increase the dose.

The last week or so went from difficult to dangerous and intolerable. The house is a complete disaster. Everything he could think of became a weapon, and he can think of a lot of things. Pencils and forks for stabbing, pool cues for batting, toys and chairs for throwing, picture frames for attempting to shatter, walls for breaking, teeth for biting, hands, feet, and head for hitting. He’s even able to get past our childproof contraptions to get to the knives and scissors.

I tried my very best to follow the play therapist’s advice and stop calling Daddy home from work under any circumstances because Javan was viewing that as a reward for his bad behavior, but he still ended up getting called two or three times during this past week. When the violence would get so bad that I was inadvertently hurting my child trying to defend myself, I knew it was time to call for backup.

Nothing is helping the behaviors get better. After three fairly consecutive short term hospitalizations, we knew another one wouldn’t help. So we talked with the psychiatrist about other options. We could put him in public school just to give me a break, but he warned that it wouldn’t be a break for long because as soon as Javan got comfortable there these same behaviors would surface at school and I would end up getting called to come pick him up all the time. Some schools have special behavioral units, but even though our school district doesn’t have one he said Javan’s behaviors are so severe that even a specialized unit would be calling me to bring him home. That didn’t sound like a good option.

The other option is a long term care facility, which would probably keep him for 1-3 months. There, they could do more observation of the different medications they were trying as well as provide more solid therapy and provide education. So I spent two entire days on the phone with the insurance company and every single long term care facility in the state of Texas that they cover. I even called one in Arkansas. NONE of them could help us! Some of them just have astronomical wait lists, with 4-6 months being the most common and many longer waits. But the vast majority were either not set up to handle autistic children (even high functioning ones) or they couldn’t take him because he’s not fully self-sufficient with bathroom and hygiene needs. That is frustrating. They can handle all these severe behaviors and have actual medical nurses on staff 24/7, but they can’t wipe a bottom?! Grrrrrrr!

One man I talked to at the insurance company explained that our policy “isn’t really set up to provide long term care,” which is why we’re having such a hard time, and that getting secondary insurance coverage might help. Great. And one lady at a long term care facility told me that her recommendation for receiving residential care was to get the school district to pay for it. Many of the children at her facility who’ve lived there for years are being funded by their local school district. So, here’s the process to make that happen. They always start kids off in the least restrictive environment. That means he’d be started off in a typical classroom. Once he failed at that for a while, they’d probably move him to a special needs classroom. Once his behaviors proved too difficult for them to handle there, he would either go to a one-on-one classroom setting or go straight to them sending a teacher to our house. Once they realize even that’s too dangerous,  they’d be forced to admit that they can’t provide a safe and effective education for him. But since they’re legally required to provide just that, they’d be legally required to pay to send him to a place that can provide a safe and effective education. Does this sound like a healthy plan to anyone? Anyone at all? Let’s go with…..no.

So I called the insurance company yet again and explained that none of the long term facilities could help and that we needed help right now. I asked if they could consider a long term stay at Dallas Behavioral Hospital, the short term hospital Javan’s been to the last few times. They said that if they called all the long term care facilities and verified that no one could help us, then they might consider it. So then I called Dallas Behavioral Hospital back and posed the same question to them. They said that they would not do a long term stay for him because they’re not set up as a long term facility with long term care programs. The man I spoke with also told me that since Javan’s already been there twice and it didn’t help, and since these behaviors are Javan’s norm instead of the exception, I needed to be looking at long term facilities more for the autism instead of the mental health side of things. He recommended calling my local MHMR  (Mental Health /Mental Retardation).

So I called them. I spoke with a mental health intake coordinator and told her the entire process I’d been through with all these other people. She said they couldn’t help with any inpatient programs,  much less long term ones. But she recommended that I call the IDD (Intellectually and Developmentally Disabled) side of the MHMR and just tell them he has autism and we need help for that, but don’t tell them about his mental illness yet or they’d just send me back to her. I haven’t made that call yet.

Many of these last phone calls had been made in desperation while my husband kept Javan in his bedroom after I’d called him home from work. It soon became apparent that we could no longer wait for the right option to present itself. Instead, we were forced to take the only option. He was no longer safe. We were no longer safe. Our home and animals were no longer safe. I called Dallas Behavioral and made sure they had a bed available. The intake coordinator told me they did and that she’d hold it for us until we got there since it’s a 2.5 hour drive, but that she couldn’t promise us he’d be admitted until they evaluated him to see if he met their strict criteria for admission. I actually laughed and told her I had zero doubts that he’d meet their criteria.He did.

We normally wait in the lobby for about an hour before the intake coordinator gets around to coming to get us, but they must have seen something different about his behavior this time, because when I told the front desk clerk we needed help as quickly as possible, they were with us in less than two minutes even though (or perhaps because) they had a full waiting room. Instead of escorting us to their typical observation and evaluation room which you share with other potential patients and their families, we were brought back to a room of our very own. I did the hulking mound of paperwork required and settled in for the camera observations, during which Javan’s mood fluctuated wildly. The intake coordinator came in and out of the room and at one point told Javan if he didn’t calm down she would have a tech immediately come get him. We didn’t have to do that. Then she brought in the Ipad so we could do the mandatory Skype with the medical doctor prior to admission and Javan was so aggressive towards the doctor that I had to take the Ipad out into the hall away from him to talk to the doctor.

Then we took him up to his floor and waited in what we all knew was the final room before he was admitted. He was very sad that we had to leave him and kept insisting that he’d be better. A nurse came in with the final paperwork and then it was time. It took three grown men to wrestle him out of the room and away from us. Three. We were led back down to the lobby and once again left for home without our baby.

That was two days ago. When we spoke with him on the phone he sounded good, although he said that we didn’t sound excited enough to hear from him. He told me he’d colored me a picture and I told him that I’d color one for him, too. The nurses said that other than getting into words with his roommate, there’d been no incidents. He sounded good again on the phone today and when we answered his call, we both tried to sound super excited. It was sort of ridiculous.

We got to visit him tonight, and he was happy and hyper, as he usually is when we visit. And, as usual, he began the visit with big hugs followed by serving us sweet tea. He’s such a sweetheart. He moved around a ton and was somewhat difficult to engage in real conversation, but have out lots of good hugs. He did report seeing “his team” again. The Kids’ Destruction Team, if you haven’t been following his adventures. The team’s mission is to destroy all hospitals, capture all doctors and nurses, and free all children from their evil clutches. If I wasn’t supposed to be discouraging this line if thought, I’d suggest a team theme song. Something James Bondish.

We requested and received a new doctor this time, so maybe that will help with something. I don’t know what. But something. Following his normal pattern of behavior, Javan started freaking out about ten minutes before visitation ended. He layoed in his Daddy’s arms and let him cradle gim like a giant infant while he cried tears of the deepest sadness and begged us to take him with us. “I just need my Mommy and Daddy. My brain is all better. I just need my Mommy and Daddy.” This visit has been very hard on us. Perhaps not as hard as the very first one, but harder than the subsequent two put together. I don’t know why. Perhaps because we don’t really think it’ll help; it was just what we had to do to survive.

This time after all the other kids and teens had lined up nicely and were obediently led off to their rooms without distress or difficulty, two male techs were called to take him back to his floor. And even though one of them must’ve been pushing seven feet, it took both of them to move him. I guess that helps eleviate my guilt over having to call my husband home for physical backup.

We head home tonight with heavy hearts and with the echos of his cries echoing in our minds.

I hope he remembers how much we love him. I know he can’t understand why we’re leaving him,  but I hope through it all he can remember that one thing. That we love him. Fiercely and forever.

My Picture from Javan

My Picture from Javan

Daddy's Picture from Javan

Daddy’s Picture from Javan

My Picture to Javan

My Picture to Javan

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2 Comments (+add yours?)

  1. Carol L. Urazoff
    Oct 17, 2015 @ 20:46:53

    Krista, my heart is breaking for you. The Lord bless you and keep you; The Lord make His face to shine upon you and be gracious to you; The Lord turn His face towards you and give your peace. Our God can get you and Japheth through this. We love you and pray for you.

    Reply

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