The Best News!

We went to Court on Monday. I had met with Joe’s attorney and told him what I was wanting for an outcome. I couldn’t be happier with what the Judge ruled.

The are subclassing Joe into the psychiatric disabilities classification. This will help prevent any DJJ incarcerations in the future by having him diverted into a facility such as RTF or specialized foster home if he gets into trouble in the future. It also opens the other things ruled up to him.

Joe is going to RTF (Residential Treatment Facility) and being taken off of his meds. Once they are out of his system, the psychiatrist will conduct testing to get a baseline of what Joe’s behaviors, observations and interview questions indicate is his true diagnosis. Because he has been in and out of the hospital so many times, and with as varying of diagnoses as he’s had, this is crucial to pinpoint the actual issues in order to come up with an appropriate treatment plan.

The agencies have to meet once Joe had completed 60 days at RTF and review the report and recommendations from the facility psychiatrist and come up with a treatment plan for once he is discharged. This will hopefully provide a seamless transition and offer him a lot more services, including home-based.

The Judge wants another hearing once Joe has been home for 30 days to ensure the agencies are providing proper support.

The school is ordered to conduct a new psycho-educational evaluation and rewrite his IEP. The Judge specified that he wants the school to examine Joe’s strong science scores and see if there is anything they can do to further him in science and use his interest to help in be more successful in other subjects.

Joe will be on probation for 18 months.

I was so happy when I walked out of the courtroom. It felt as if a huge weight had been lifted. At the moment we are still waiting for a transfer to RTF (he is still at DJJ). I should hear early next week where they plan on sending him, and the length of wait Joe should have before transfer.

My only sad point is that now, since my husband deployed, I can’t visit Joe. They won’t allow my daughter to visit (no visitors under 18), and because I have no sitter I can’t see him. That breaks my heart, but I hope that the transfer occurs soon se it isn’t that long before I see him again.

In other news, my friend that has been in the hospital since January is not doing very well. He has a huge infection that is shutting down his systems and his skin grafts have stopped healing. His family has decided not to resuscitate if he goes into cardiac arrest. My heart is breaking for him and his family. I’m still hopeful that he will pull through this, but it’s looking pretty grim. He is strong and stubborn though, so anything is possible.

Home is Where the Heart Is

Joe is home!!!!!!!!!

So far, so good. Things went smoothly today, and Jane was smothering Joe with affection (she “missed him infinity!”) They had a great time playing. Joe worked on some puzzles and word searches, did some artwork and was happy to have spaghetti for dinner. No issues whatsoever.

I went to pick up his meds, and thank god the insurance went through without needing pre-authorizations for anything. Yay!!!

Ms. A from TTC is meeting with me on the 30th, so hopefully I’ll have more of an idea of how much longer it will take for Joe to be accepted in the program. She’s then going to Joe’s school to meet with him. If only he was off the waiting list. The person I spoke with yesterday said that they can provide in-home services, behavior interventionist that is on call, and a lot of things with the focus of keeping Joe out of the hospital and helping him with coping skills and anger management techniques. Hopefully they help with social skills, as that is another area I’m having problems finding help with.

The counselor can’t see Joe until Monday. He sees the nurse at mental health tomorrow, but it’s his first nurse visit and I’m not sure what to expect.

I haven’t heard back from anyone on the list yet. Hopefully they’ll get back with me by the end of the week.

My fear is that Joe will run away again, then they’ll take him into custody and have him see a Judge. I don’t know how this county works in regards to mental health cases in juvenile court. I hope to avoid that route. If he can get into the TTC program, maybe that will prevent any Court involvement.

It is so good to have my babies home and together! Jane, Joe and Mark are the loves of my life. Yes, my husband too, but it’s different when it comes to kids. You are responsible for their lives and development. I used to feel like a failure when Joe started having issues, but his diagnosis is no more my fault than if he had heart problems. It’s what I do to help him that should be measured, and I can honestly say that I’ve tried everything I could think of as I thought of it. I just hope all of this helps him.

 

Tuesday Tuesday Tuesday!

I spent so much time on the phone today that it felt like I was working at a call center.

I got a list of resources from the Senator’s office. There were six agencies listed, all of which are independent organizations with a mental health focus that operate in our state. A few have registered lobbyists, all are volunteer-run and only one is federally mandated.

#1 on the list was a Family Federation. I tried the phone number and it did not work. I called the toll-free number and spoke with a person. They told me of a waiver program that was not accepting applications, nor did it look like it would continue to be an option after the current budget year. They took some information down (the person I spoke with was very nice and trying to help, just limited in the ways she could help). She said they would call some of the agencies I am working with to see if they could help push through additional services, especially home-based. I will anxiously await a call back.

#2 on the list was a mental health association. They basically said to call #4 on the list and could offer me no other suggestions.

#3 on the list was NAMI. NAMI said I’ve done everything that they are aware of that is available.

#4 was an advocacy group. They said they had no other suggestions because I have tried everything available that they are aware of. They do have some parent support groups and upcoming events that they are going to send me information on. They also want me to write a letter outlining Joe’s case so they can use it when they try to lobby for better mental healthcare.

#5 was a center that is no longer in existence.

#6 is a self-help group. I’m waiting on a call back with further information on meetings and events they hold, but that’s all they could offer.

I don’t think the efforts will all for nothing, but I was disappointed in the lack of new information. I was hoping that one of the groups would have something new for me to try.

I was also on the phone with the hospital. I have a family session in the morning, and if all goes well Joe will be coming home with me. I’m awaiting a call from mental health to let me know when his post-hospitalization eval is.

Hopefully Joe will be able to handle the stressors in the real world when he leaves. In acute care, the temptations that cause his impulsiveness to really flare up are absent. In the real world, those temptations are everywhere. I think that’s why hospitalizations don’t help much. They’re great for medication changes and evaluating their effectiveness, but horrible for providing guidance in real-world situations.

Despair. It’s a Strange Feeling.

Joe is still in the hospital. They have given me several suggestions, but when I call to inquire at the places they recommend, I am told that they don’t have the capabilities of helping someone with Joe’s conditions. The meeting between Ms. A at TTC and Mr. B at mental health fell through. I spoke with Mr. B, but Ms. A ended up not being available. No response yet on if TTC is even close to getting Joe off the waiting list for services.

I was desperate. I emailed and called government officials for help. I received some feedback referring me to organizations, but most of them I’ve already contacted. There’s only one agency I haven’t heard of before, but due to the weekend a holiday I have not been able to contact them.

The communication from the hospital hasn’t been as much as I’d hoped. One social worker saw him, then went on vacation. Another is seeing him now. They’ve made some med changes, but just with dosages and not adding or subtracting any meds. No outbursts, some lethargy, and a bit of social awkwardness.

When I visited Joe on Saturday he seemed a little down. I’m not sure if he was sleeping when I arrived, but it took about 15 minutes for him to liven up a little. He kept saying he wants to come home, he doesn’t know why he does what he does, he’s working on ways to clam down and not run away. I really hope that’s true and it works.

When I spoke with the social worker today, they had no ETA on release and didn’t mention much about his care afterward. I’m hoping they have some luck with the insurance company. They have been trying to find out exactly what they’ll cover. I’ve had such a hard time finding anyone who knows anything about mental health coverage at the company, and usually answers come after long hold times. Sometimes answers are conflicting. It seems that the insurance has decent coverage for general counselling and psychiatry, but I’m still trying to find out if they cover more specialized treatments. We shall see if anything pans out.

Jane is really missing her brother. She’s holding up well (Joe being in the hospital is normal to her at this point). She had fun today though. Her best friend came over to play and they were so happy to see each other (he had been gone for the holidays). They are so cute together!

A bit of bright news…… Mark got his first job! He was pretty excited about making money. The job isn’t bad, pays decent for a first job, and he seems to like his coworkers. He doesn’t socialize much normally, so hopefully this will help him with his people skills. He’s incredibly intelligent but also introverted.

My husband is almost done with a big work project, then is starting back up to school and going for his next degree. I’m so proud of him! He’s such an amazing person. Smart, a great father, very logical and supportive. Still totally in love with him after all these years!

When I feel despair, it sometimes takes awhile for me to look at the positive things in my life. I have an amazing husband, three kids that I adore and love more than life itself, good friends and wonderful parents. I have the privilege of being available for my children 24/7 without having to worry about a job. We have a nice house and good schools, medical insurance that at least covers the basics and have food in the pantry. I am so fortunate. I will get through this. I will find a way to get Joe all the help he needs, even if I have to fight until I take my dying breath. My children are the best things that have happened to me. They have taught me unconditional love, patience, and have given me a stubborn and protective streak that I didn’t have before. I will walk through hell and back if it would make their life better.

Here’s to hoping tomorrow will bring good news!

I Hate Weekends Like This

I should have loved this weekend. Gorgeous weather. My husband home. Nothing planned. Yes, it was nice to be able to relax with Jane and my husband, but in the back of my head I was anxiously awaiting Monday.

No one is available on the weekends. Mental health agencies are closed, TTC is closed, even the doctor and therapist at the hospital are off work. I spent two days waiting for Monday to arrive so I could actually start making calls and trying to find out the next step, and see if the next step is any different from the previous one. I hope it is.

In case of an emergency, hope it happens on a Monday. I’ve learned that over the years. The weekends that everyone loves so much are something I dread in situations like this.

I spoke with Joe on the phone earlier. I called him, he hung up after a couple of minutes, agitated at the other kids for being noisy and complaining that he couldn’t hear me. He called back a couple of hours later but had the same issues.

I used to go to all of the visitation times when he was in the hospital, but upon discussing that with the social worker and the outpatient therapist it was recommended that I limit my visits. They didn’t want Joe to think he’d get a lot of special attention for acting out, running away, threatening, suicidal ideations/attempts, or whatever particular combination he was admitted because of. I can understand where they are coming from, but for me I can’t stand not going. It makes me feel mean and I don’t want Joe to feel like I don’t love him. It makes the hours around visiting time especially difficult, knowing that I could be spending time with him but instead am sitting at home or whatever I happen to be doing at the time.

I hope tomorrow brings some good news.

Running Away. And in the Hospital…..Again

Joe’s IEP meeting was today. He wasn’t even in the meeting, so I’m not sure why they decided not to have it in December. His counselor, Mr. B was in attendance, as well as his teachers, OT and Speech therapists, school psychologist, and assistant principal. The IEP seemed to be fairly typical (based on his previous ones). Mr. B got some good input on Joe’s school behaviors. All was well with the world.

Then his teacher mentioned that she was worried about Joe not eating his lunch. She had seen him throwing his food away before he went home for the day.

The assistant principal said she had seen Joe eating lunch in the cafeteria.

Well, after the IEP meeting, we headed to the cafeteria. I discovered that Joe had a negative account balance. He had been getting ice cream, cookies, rice crispie treats, chips, etc with his lunch money starting in October, and when he ran out he kept spending anyway. The cafeteria manager said he was still getting free lunches because he was telling them that he had no food. So, he was lying to the cafeteria workers to get school lunch and just dumping his packed lunch for the past two months.

When Joe came home from school, I sat him down and explained that he had been caught (I had printouts) and that the cafeteria workers were aware that Joe packed his lunch every day and ate his breakfast before he went to school. He wasn’t very happy, but when I told him to go to his room he got irate and ran away. The boy is quick. I went after him but he was in the trees before I could catch him. Plus, I can’t just run after him long distances because I have Jane too.

I called the police immediately and gave a description. I called Ms. A at TTC agency and told her what was happening, and she was on the phone with me when the police arrived. The police found him within 30 minutes, which was stressful but could have been much worse. Joe was found in a rather bad area and was very lucky he didn’t get hurt.

The police said that next time Joe runs away, they will have to take him into emergency protective custody and have him go through the court system. He isn’t a danger to others when he runs off, but he is a danger to himself. He is oblivious to anything around him, isn’t always properly dressed for the weather, gets lost…. and in the past he’s gone into strangers’ cars and houses. So, he’d basically go into the juvenile justice system, which is something we’ve been trying to avoid for a long time. He isn’t criminal, but he may learn to be if he ends up in that system.

I took Joe to the hospital after the police brought him home. They evaluated him, and at first said he couldn’t be admitted. Apparently ‘just’ running away isn’t considered reason for admission per the ADA. When Joe started talking about wanting to die and not caring if he got shot in a bad neighborhood, they decided that was a good reason to admit him. Basically, he’s been in acute care so much that they don’t think they can really help him (because the typical stay is 7-10 days). I’m not sure how long he’s going to stay, but I really hope someone can help me with some other services for Joe when they do discharge him. COUNSELING AND OCCASIONAL PSYCHIATRIST VISITS ARE NOT ENOUGH!!!!

I updated Ms. A and Mr. B with the status of Joe and the goings on of the day. The one good thing: a meeting is scheduled for all three of us to talk together on Thursday. OMG…… seriously? I’ve never seen them both in the same room. Yes, they’re from totally different agencies, but this is my chance to ask them questions and not have them be able to state ‘the other agency’ should do this or that. *silver lining*

But for now, my baby is in the hospital. Today he hated me and said I was a terrible mother and he just wants to run away forever. He said that I should just let him go away and be adopted by someone else. I’m awful, a lot of curse words and he was going to pick up a chair and break my head and get blood all over the walls.

Then he gave me a huge hug before I left and said he was going to miss me.

I really don’t know what to do to help him. I keep trying and trying and failing.

And Things are Quiet Once More

This morning started with a counseling session with Joe, Jane and me. It went, but didn’t really accomplish anything. I hope someday I can say things go differently, but it seems that a breakthrough isn’t pending anytime soon.

I took Joe to the hospital for an assessment last night and they were on the fence about admitting him. He wasn’t wanting to run away or feeling suicidal at that point in time, so he wasn’t deemed a danger to himself or others at that moment. They sent him home.

The neighbors that just moved in have a daughter in Joe’s grade, so he went to her house to study for a quiz tomorrow. She seems to be nice to him, which is fantastic. Joe has always had trouble getting along with others in his peer group, tending to socialize more with kids 3-5 years younger. I would love to seem him make friends his own age, but he is lacking in social skills and doesn’t have many interests that are typical of his age range. He still plays My Little Pony with his sister in the backyard and thinks that action figures and dinosaurs are the best things ever.

I tried to get more information from the insurance company, but gave up after three calls and not getting any real answers. I don’t know if people just aren’t trained well or if mental health questions are so rare that it confuses them. They don’t have case managers, which would have made things a lot easier.

Joe’s IEP meeting is scheduled for Friday morning. His counselor will be there, but Ms. B from TTC isn’t able to make it. At least I’ll have someone in my corner.

I’ve put out more feelers to different agencies in hopes that trying again may accomplish something. Maybe they’ll just get tired of talking to me and approve him. I hate the denials with their ridiculous rationale. He’s ‘too smart’ or ‘not a victim of abuse or neglect’ or ‘doesn’t have severe enough symptoms.’ I thought the point was to prevent bad things from happening to him or by him. I guess I’m mistaken.

I swear, if there was some centralized place to get information it would save a lot of time, money, heartache and confusion. I think agencies are intentionally veiled to keep from having to spend money. Even the ones I’ve found haven’t been the most forthcoming with information.

At some point my head will stop spinning and I’ll be able to concentrate on one or four things are a time. It seems that I’m pulled in so many directions and keep so much craziness organized in my head that my brain jumps from one thing to another to another without a comma.

A Viscious Cycle

Once again, I’m waiting to take Joe to his assessment. They want to determine whether he should be in acute care again.

Wash, rinse, repeat.

I spent all day trying to figure out my new insurance. Of course, the start of the year means the start of a very different insurance policy. My first call was a failure. The insurance company gae me the HR number for my husband’s employer. The conversation went something like this:

Me: I was wondering if mental health is covered through your company, or if you have another company that handles the mental health portion of the policy.

Them: I’m not sure. You will have to contact your HR department to see what company covers mental health.

Seriously? You can’t look up my policy? You can’t see that YES, you do cover the mental health portion and don’t outsource it to UBH or somewhere else? HR was shocked when I told them what insurance said. They recommended I call insurance back.

The next conversation went slightly better. The girl was confused by my questions and put me on hold for long periods of time while she looked up answers. I gave up.

Third call went much better. I found out what I hope was the correct information. I’m cautiously optimistic about coverage. We’ll see if that lasts once they start processing the claims.

Aside from insurance, I was on the phone with Joe’s counselor to update him on what had happened. Spoke with Ms. A from TTC to update her (and maybe, someday, get him off the waiting list and into the program).

Joe’s still a bit moody and angry today, but he hasn’t run off again. When I was talking to him he expressed suicidal ideations. That’s worrisome. He actually tried to hang himself with a curtain before, as well as a jacket sleeve. Needless to say, we don’t have curtains and we have cordless blinds now. Jackets, on the other hand, are much more difficult to eliminate.

I’m hoping that the evaluation at the hospital is productive. I’m not sure if they will want to admit him again or if he’ll be sent home. I just like to have him checked when he gets into these types of behaviors and thought patterns to make sure he stays safe (and everyone else in the family too).

I wish there was some other benefits through insurance or state agencies or wherever that could point me in the right direction to get the services Joe needs in place so he isn’t bouncing back and forth between the hospital and home. It’s frustrating. He’s already 13. How much longer will her be open to therapies? Will he hit an age that will make treatment exponentially more difficult? What happens when he gets bigger and stronger and I can’t restrain him?

Running Away and Other Things

My bubble of excitement has popped. I thought Joe was doing better since he left the hospital, but today was a setback.

Joe went to school this morning, I picked him up for an appointment with his psychologist and then we came home. Things seemed to be fine. Jane and Joe played on the new swing set in the backyard for awhile until I got chilly and told them to come inside. Joe took off his coat and shoes and asked if he could have some chocolate. I told him no since it was getting close to dinner time. He yelled at me, calling me a bitch and how much he hated me, then he bolted out the back door.

I waited for about 30 minutes, figuring he’d head back when he realized he wasn’t wearing shoes. No luck. I called the police, who arrived a short time ago to get information. They are looking for him now.

Meanwhile, I’m at home with Jane. I have no car until my husband comes home from work (which should be soon). It’s going to be getting dark out in the next 30-45 minutes. Joe has no coat or shoes. I’m going a little insane.

———————————————————————————————————————————————————-

UPDATE:

The police found him about 3 miles away from home. The had their social worker/victim’s advocate (very nice woman) talk to me, and she gave us her number and said Joe could call any time he gets agitated. While it is a wonderful offer, when Joe gets agitated he usually doesn’t stop and consider his options. He just does what he feels like doing. Having her number may help, but I’m not very optimistic.

Joe went to his room and fell asleep. You’d think he had just got home from a friend’s house. He acted like nothing happened, not a big deal. Of course he was cold, and he’s probably going to complain about his feet hurting tomorrow. He’s lucky someone found him. A t-shirt and socks doesn’t help much when it’s in the 30s.

I called the hospital and they don’t have a spot in adolescence. They said to call back tomorrow and make an appointment for an assessment. Again. Doesn’t anyone realize this old pattern isn’t working?

I sent an email to Ms. A at Through the Cracks. Maybe that will push him up in the waiting list. Then again, I have no idea what the waiting list looks like.

There’s an appointment with Mr. B on Wednesday. He just wanted it to be a parent appointment, but I’ll have to call him tomorrow to see if he wants to change that up and actually see Joe.

Sometimes I think the police officers (not all, but some) don’t really get what we’re dealing with when it comes to Joe. They look at it as a tantrum, when a tantrum would be welcome in place of the explosion it actually is. Joe is stubborn. Cold and no shoes didn’t get him to change his mind and come home.

I looked into Lojack for people. Sadly, it appears that the bracelets are easily removable. It also costs $99 to enroll and $30/month to monitor. I can’t see a removable bracelet helping. Joe will either lose it or intentionally lose it. In other words, it won’t last long.

I wonder if they have Lojack implants. Too bad I’m only half-joking. But, when you know what it’s like to not know where your child is, you become desperate to not have that happen again. This has happened to me dozens of times.

I wonder what tomorrow will bring.

Tornados: Not Just for Weather

Happy New Year!

Happy Birthday!

Happy family visiting from out of town!

Oh, and happy lingering sickness!

That’s an overview of my time away from the computer for the past several days. Luckily, the tornado of hectic merriment went basically without incident. I am so happy I could explode!

I had a mini break down on New Year’s just after midnight. After being sick, the stress from Joe being in the hospital caught up with me. It probably also had to do with being on the edge since he came home. Not knowing what to expect with med changes can be exhausting. My poor husband, he’s so wonderful.

Joe made it through the late Christmas and his birthday with the grandparents being here without a hitch. He and Mark also got along better than before (which means that they tolerated each other without fighting). It was such a nice visit.

There were a rough couple of hours prior to the visit. Joe had decided to sneak into my bedroom (which is off-limits) and take his sister’s iPad (which is also off-limits). He was very angry when I took it away and proceeded to curse at me and tell me how awful I was. I shut his bedroom door and turned on the door alarm, then went downstairs. When I went up later to talk to him about it, the poor kid broke down sobbing saying “I don’t know why I keep doing things” and “I try to do the right thing and sometimes it’s just so hard!” I’m going to bring that up to the counselor. That may be something he can concentrate on in therapy.

I feel like I’ve been tossed around and run over by a truck with this cold or flu or whatever I picked up, but the amount of good things this week has overshadowed my illness.

Monday starts his appointments with the psychiatrist again. Joe hasn’t been since right after he was discharged.

I hope that the new therapist at school helps him make progress and continue to keep his emotions and impulses in check. I’m so proud of him!

I love that I can post happy updates. The minor things we’ve dealt with over winter break (which some families may not consider minor, but for Joe really are) were short and fairly easy to deal with. It may not be exciting to read about, but it is so exciting to live through!