I Take Pause.

 

I am switching topics for this post.

Last night, a friend passed away. He had tried to kill himself through self-immolation in January, and in the past few months had amazed even the doctors in his recovery. Sadly, an infection set in. After months of eating through a feeding tube, his body lacked the ability to fight off the infection, and he slipped out of consciousness a few days ago and his life ended.

If you haven’t known anyone that tried to take their life, it gives those that knew him an odd way of evaluating their past encounters and conversations. What if I’d known he was that low? Should I have figured out how bad he was feeling? Why didn’t he call to talk if he was at such a low point? What if……? The questions can be haunting.

It saddens me that someone so young, so smart, so strong was lost in such an unsettling manner. The fact that he at one point was so saddled with his problems and emotions without reaching out to anyone is horrifying. The method of his suicide is even more baffling. You hear of things like that, but you never expect to KNOW someone who chooses to set themselves aflame.

My husband is halfway around the world, and he has to deal with his loss on his own. He can’t attend the funeral and say his final goodbyes. The only positive thing if that we were able to go to the hospital (out of state) a couple of times while his friend was alert and knew he was there.

I feel for his family. To lose a son, a brother, a grandson….. I don’t know how someone makes it through such a thing.

My heart breaks for many reasons today.

This passage, though well known, is what keeps going through my head:

To be, or not to be: that is the question:
Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles,
And by opposing end them? To die: to sleep;
No more; and by a sleep to say we end
The heart-ache and the thousand natural shocks
That flesh is heir to, ’tis a consummation
Devoutly to be wish’d. To die, to sleep;
To sleep: perchance to dream: ay, there’s the rub;
For in that sleep of death what dreams may come
When we have shuffled off this mortal coil,
Must give us pause: there’s the respect
That makes calamity of so long life;
For who would bear the whips and scorns of time,
The oppressor’s wrong, the proud man’s contumely,
The pangs of despised love, the law’s delay,
The insolence of office and the spurns
That patient merit of the unworthy takes,
When he himself might his quietus make
With a bare bodkin? who would fardels bear,
To grunt and sweat under a weary life,
But that the dread of something after death,
The undiscover’d country from whose bourn
No traveller returns, puzzles the will
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience does make cowards of us all;
And thus the native hue of resolution
Is sicklied o’er with the pale cast of thought,
And enterprises of great pith and moment
With this regard their currents turn awry,
And lose the name of action.

 

I don’t know what, if anything, comes after this life. I just hope that he found the peace (or nothingness) he wanted. I wish he had never felt that way. 

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.

Nowhere to Go but Up?

The past six weeks have been incredibly difficult, and I’ve had a hard time processing everything. It’s strange to go visit your child behind razor wire and amongst a sea of jumpsuits.

Joe seems to be doing okay. He does very well in controlled environments (hospitals, and apparently testing facilities at a jail type facility). They have completed their evaluation, which is a combination of perplexing, frightening and amusing. It is difficult to pinpoint what Joe’s exact issues are because of the amount of medication he’s on. He has been taking anti-psychotics half of his life, and over the past two years or so his medications have been changed repeatedly during his multitude of hospitalizations.

They have noticed what appear to be auditory hallucinations, an example being Joe hearing kids teasing and laughing at him when a guard said that no one was bothering him. He described doing things in the past that never happened (like going to gun shows). Joe has an obsession with weapons, but we’ve never been to a gun show. He’s not even allowed to own toy weapons. He also says that he believes in Jesus and really wants to become Jewish.

It took me two weeks of trying before finally getting permission to attend the inter-agency meeting. DJJ and Mental Health disagreed with the next steps to take (basically because of finances). DJJ thinks that Joe should go to Residential for a period of 90 days, be weaned off his medication and have baseline testing done while unmedicated. I strongly agree with this. Mental Health wants him to come home, see a behavioral interventionist once a week and see a counselor in school once per week.

I’m going to talk to Joe’s attorney next week and go over the evaluation and recommendations. Court is next Monday. My husband is deploying this week, so he will be gone before the Court date. Jane is having trouble dealing with brother being gone (and she isn’t able to visit) and Daddy leaving soon.

On top of everything going on with Joe, we have been trying to make it to a hospital out of state to see a family friend who is in the burn unit.  It appears that the fire was a suicide attempt and everything was touch and go for awhile. Things seem to be looking a lot better, but a rather bad infection has appeared and is antibiotic resistant. We are hoping the infection clears soon and he continues with his amazing recovery (he had been given a 10% chance of survival).

The Judge next Monday will play a huge role in Joe’s future. Will the Judge agree with DJJ? What home-based services will be ordered? Will the Judge listen to Joe’s attorney and my recommendations for more intensive home services (like MST and IFS with 24 hour on-call assistance), or will the cheaper solutions be chosen? Will the Judge increase the quantity of time Joe spends with a behavior interventionist? Another week to go until I have these answers.

I want the help needed to keep Joe at home, attending his school adn avoiding hospitilizations and run-ins with law enforcement. I want to know when Joe is home everyone is safe. I want Joe to learn how to deal with the outside world appropriately and learn life skiils needed to be a productive adult, and hopefully happy adult. I don’t think these things are too much to ask for. He just needs a bit more hlep that most kids.

The Clock Ticks

I took Joe to meet with his attorney and complete the intake process with DJJ yesterday. This has been very difficult for me. Court is on Monday, and in all likelihood they will be taking him directly from Court to a testing facility (through DJJ) for 45 days, then he will return to Court for his sentencing.

The testing facility is nothing like inpatient hospitalization. They told me to take Joe’s meds with us to Court, but bring nothing else. He will have to wear on of their jumpsuits. Toiletries will be provided. He will have a social worker that I can call to find out about his progress. There is some visitation allowed on weekends.

I hope this helps. I feel like I keep saying that. For years, I’ve always hoped whatever treatment he is receiving will help, but so far none really has.

Once Joe completes the testing, the Court can allow him back home with the same treatment he is receiving now (weekly counselling and psychiatry every month or two), order additional treatments, place him in a children’s home, or order him to the DJJ jail. The last seems highly unlikely, but will depend on his behavior in the testing facility and in Court.

They can also place Joe on probation up until his 18th birthday. This means he can be taken to DJJ if he doesn’t comply with his probation terms, which are usually take his meds, participate in treatment, and follow school and house rules.

This is going to be a long weekend. I’m not telling Joe that they may take him away from the Court building. I’m afraid he will get upset and either run away or hurt himself or someone else. Instead, this weekend will be spent ignoring the elephant in the room. Hopefully my nerves can hold up for two days.

I hope this helps. I really hope this helps.

Mornings are a New Beginning

We had to wake the kids up early to take my car to the shop (long story, but this is shop #2 and the car has been not working right for a week now). Joe and Jane were a little grumpy, but we stopped through Starbucks on the way home and they got hot chocolate so they were appeased.

Joe is doing better today so far. He hasn’t been too moody and irritible, which is the first time in over a week I can say that. He’s still grounded (stealing and ISS aren’t things to get away with), but seems to have calmed down a bit about it.

I really hope this next week goes well. Joe is nervous about going to Court. I’m wondering if that is the cause for his recent irritibility and lashing out. It’s so hard to tell with him. As much as I try to put myself in his shoes, it’s so hard to do. The way he thinks is such a mystery.

Jane finished her first grade math (I homeschool her since she isn’t old enough for kindergarten until fall). We started on A Midsummer Night’s Dream by Shakespeare (she’s reading the part of Hermia) so she can get used to Olde English early on. She’s reading on at least a 3rd grade level, but will probably be at a middle school level by fall. She picks up on things fast. She’s so much like my oldest in that regard. Joe is getting a little frustrated because his little sister is correcting his reading and helping him with math. I told him everyone learns differently and is good at their own special things. Joe can see big picture. He thinks outside the box. He can come up with amazing solutions to problems. It’s the details that ellude him.

I think if Joe and Jane combined their intellectual strengths they could do amazing things. Brother/sister business partnership?

Lost

Today Joe go an in school suspension for stealing. When he came home and found out he was grounded because of it, he tried to attack my husband for the first time ever (who was off work), threatened to ‘destroy the family’ and said it wasn’t his fault he stole. He just wanted the stuff.

I’m at the point where I’m scared all the time. He’s starting to threaten and act out and steal on an almost daily basis. Throw in the physical attacks, running away, and total lack of remorse or any sense of wrondoing and I’m not sure what that equals. I do know that I’m on edge, trying to find ways to calm him without bending the rules of the house. If I let him get away with the slightest thing then he will think he can get away with anything. He already geel that he should be able to do whatever he wants without consequences.

How do I get through to him? He knows right from wrong. He knows what he’s supposed to do. He knows what he’s doing when he threatenes and attacks. I used to think it was uncontrollable, but it isn’t. He only does it at home. He’s told the doctors that it’s because in public people can ‘see him’.

I’m afraid that he’ll abuse future girlfriends or a wife with the way he thinks and acts if he doesn’t learn how to change his behaviors. I’m afraid when he grows bigger he’ll have less of a fear of other people and may start harming others apart from me (and the earlier attempt at my husband makes this fear stronger).

I love Joe desperately. I want to help him through whatever is causing his negative behaviors. I want him to be able to show his sweet and loving side more often. But I’m scared of what will happen if things don’t get through to him or if he decides that he doesn’t want help. I don’t know what to do.

 

Information Overload

I have been trying to process a lot of things lately, and I’ve been dreading what will happen.

Joe went back into the hospital a couple of weeks ago, this time for about 5 days. He had a bad day at school (which he didn’t mention when I asked him how his day was). He acted fine, played for awhile, and then saw that I had bought his sister Starbucks hot cocoa when we were out for lunch. He became livid. I hadn’t bought him any, it was unfair, etc. Then he started attacking me. I called his counsellor, who for the first time actually heard what it was like when Joe got into angry mode. He heard Joe attacking me and saying that he was going to kill me. Both his counsellor and I called 911, and I managed to restrain Joe before the police showed up.

Joe now has to go to Court. I’m not sure what will happen at Court. I have hired an attorney, and we are hoping it will help push through some of the services I have been fighting for. However, he can go to juvenile detention as well.

Even with Court looming, Joe doesn’t seem to be afraid of anything aside from the food in jail. Yesterday, he got mad because I told him to wait until after dinner for sweets so he told me “You know I’m going to kill you someday.” He was very calm.

I’m not sure what will happen. I’m not sure if what happens will help. I can only keep hoping that things will get better for all of us.

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.

 

This made me think a lot about what Joe might be going through. It’s hard for me to understand, but it helps a lot when others share their experiences with their diagnosis.

The Beauty of Being Untypical

1280x960 Alone In The Dark BackgroundAn ongoing battle.

A fight against oneself.

Never knowing what the next day will bring.

Or even the next moment.

From feelings of happiness, full of optimism, and that nothing can hurt me.

To agitation, a grim sadness, and overpowering despair.

It’s as if you’re feeling on top of the world, extremely creative and productive.

Ideas and thoughts racing at the speed of light.

Life has never been better.

Then suddenly, those grandiose feelings turn sour.

Nothing feels right or worth it anymore.

Hating myself, my life, and everything in it.

Feeling hopeless, unmotivated, and wanting to end it all.

Swinging from one extreme to the next with a touch of normality now and then.

Left to wonder when I’ll finally feel well again…

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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.