New year with new Marcus

Happy new year to all!

Marcus has declared that he "gets it" and will now be working for discharge. I think it is monumental that he can finally see that he has a role to play in his own treatment. Maybe it's a developmental leap, I don't really know, I just know it's a good thing. Since making this declaration he has cleaned his room (and maintained it for the most part) and not had any more police calls or trips to the hospital in handcuffs. This is totally huge, as you know. His home visits have been good. Christmas is always his most excitable time so we had some pacing and some stream of consciousness talking, but that was it. Really. I'm not ready to call this an official turnaround (he has had restraints at the cottage) just yet, but there is definitely something going on.

I haven't been good at writing the counternarrative stories I talked about in my last post. I find that all my memories have something to do with his Tourette's. One funny story though was one time when we were returning from a testing session. Marcus must have been about 6 years old. He was an incredibly cute little boy. Anyway, we were in the elevator with two elderly women who smiled at us when we came in. You could tell they thought he was cute. Suddenly, Marcus started making some noises and blurted out "bitch, you bitch" (one of his favorites). You should have seen the look these women gave me!! Inside I had to laugh. Marcus was totally stressed from the testing so I wasn't at all surprised he needed to get it out. A funny story for sure.

Alternative Narrative

A friend recently suggested that a possible activity for our family would be to construct an alternative narrative to the negative one currently surrounding Marcus. What a thought! I can't believe I didn't think of it.

The idea is to put together a book of fun family memories. We certainly have those. So, my future posts will focus on telling some of those positive, fun stories. 

Still struggling

Marcus continues to struggle in residential. He can go for days, even a week, without incident but then erupts into a tantrum that results in restraints. He's managed not to be taken to the hospital for almost two weeks until last night. He still can't manage a "no" or a firm limit. This time the limit was that he couldn't come for a home visit if he'd had a restraint within three days of the visit. He has restraints on Tuesday night and Wednesday morning so we enforced the rule. That did it.

He ended up in the hospital. He called me from there last night with a passionate argument for why residential isn't working. He still blames them for everything and doesn't see his own role or that attacking people isn't the appropriate reaction to whatever is going on. He says he's going on a med, food, and shower strike until he gets released from the hill. He even said he would run if given the opportunity. I couldn't get him to see his role.

I tossed and turned all night worrying that he'd bolt once he was released from the hospital. Turns out he's still there at almost 2:30 today. I just can't see the light that should show me the right thing to do. He's got to get this behavior under control. Soon, it will become criminal and he would never survive jail. He's still only about 9 years old emotionally. I worry all the time.

Anxiety

Marcus had a good week (no restraints, no MHAs) until he knew when his Thanksgiving home visit would be. Poor guy got overly anxious about messing up while at home and had several outbursts. He's worried about stealing food and disappointing us. I feel for him worrying so much about making a mistake. How do we ensure he will be successful? I talked to him on the phone to see whether he wanted to shorten the visit, but he didn't. Mostly he wants to have our usual Thanksgiving ritual (ritual is very important to him) and most importantly, he wants to stay long enough to eat all the pie! Wish us luck.

From bad to worse

I hate to be always updating with bad news, but...

Marcus began to really struggle his third week at Hillside. He ended up having such serious tantrums that they called the police and the police took him to the hospital for a mental hygiene arrest. I think this happened four times in about eight days. The last one was only four hours after he had been brought back to the cottage. Things just kept escalating. It was really horrible to think of him in handcuffs going back and forth to the hospital. It became time to admit him.

He's been in the Strong Child and Adolescent Psychiatric unit at Strong hospital since Wednesday. So far he's only had minor agitation, no violent tantrums. But they haven't integrated him into the schedule yet so he hasn't come up against any significant limits yet. Echoes of his stay at John's Hopkins when he was ten are running through my head.

I am not sure why this has happened but I'm thinking that he's testing the limits to see how far they will go. Both the hospital and Hillside have firm limits and he tantrums when he hits them. Morris and I got into a pattern of negotiating the "no" so that we avoided tantrums, but this clearly has not helped him. It could also be a medication issue. The "hill" increased Ritalin and Haldol so that change also could have contributed. No one really knows yet.

This is the last hope for Marcus. He must learn to live with a "no" or he won't be able to be on his own, go to college, or get and keep a job. I still have the goal that he can live without institutional supervision but I'm terrified that he won't be able to. All I can do now is hope that Hillside can turn him around. Several staff have said they've worked with kids even worse than Marcus and have seen them turn around. Please let this be true for my son. 

In Residence

Marcus has been in residential placement for a few weeks now. The first week went well for him. He even called me the second day to say that he had earned 95 out of 100 on the behavior scale. Wow. What a difference from last year. He was suspended from school the first day last year. I had a tremendous mix of feelings. I know that this is the right thing to do, but the lack of incidents made me think he didn't need placement, that they would all be wondering why he was there. My therapist reminded me that placement is the "medicine" he needs and that it works doesn't mean he doesn't need it.

Well, the first week was a honeymoon.

The next week went a little differently. He began to struggle with limits and with building relationships with peers - both key reasons why he needs placement. Tantrums ensued as did property damage. Remember that, while only 15, Marcus is 6'6" and about 250 pounds. A mild tantrum can end up with lots of damage. Staff did call me, but not to have me come get him (my fear). They were informing me of restraints and asking me about the nature of his tantrums. They were doing their jobs. The worst part was that the week got worse as it went along and they ended up having to call the police who did a mental health arrest. That it's not a psychiatric issue complicates things because he doesn't need a psychiatric admission. As a result, he ended up spending all night in the psych unit lobby and going back to the cottage at 6 am. I realize they had to do it, but still. The hardest part for me was that they didn't want me to go to the hospital. It would have been interpreted as reinforcement and they have to establish the limits with Marcus firmly. I felt like I was in a weird limbo knowing my son was in the hospital but not going to be with him.

He came home for his weekend visit nonetheless (but with the understanding that if he has another week like this he wouldn't be coming for a home visit) and it was okay except for one glaring incident. Since he's been gone, my husband and I have begun to leave the locks we have on some doors (locks to keep Marcus out) open. We forgot to lock the attic lock in time for his visit. That's where we keep the sharp kitchen knives as part of our safety plan since Marcus threatened me with a knife some time ago. I don't think Marcus was home two hours before he had gone into the attic and taken all the knives into his room. I found out by going into his room without knocking (not my usual practice) and caught him. Scared me to death. His explanation was that he needed them to play "demigod". I believe him but I also know that things could turn quickly into a dangerous situation.

He still needs minute by minute supervision. We can't forget even for one minute. Another reason why residential placement is needed right now. It's a last ditch effort for Marcus to be able to live in community. Soon he'll be an adult and the police won't hospitalize him if he's violent in community...they'll shoot him.

Aaaaaah

It's worth repeating...Aaaaaaaah!

Marcus will be moving into residential placement this coming Tuesday. I feel like I got kicked in the stomach. I thought I had this handled. All the rationales were in place. Experts at OMH had determined that he was eligible for an RTF placement. The RTF itself admitted him. We went for an intake visit and Marcus has been for several very successful transition visits while we waited for a spot to open up. He knows kids there and his good friend from Crestwood is in another unit. They have a culinary program that he is totally looking forward to attending. He wants to go. I thought I was fine.

I felt guilty, of course. Guilty that, once again, "we" as parents couldn't give him what he needed to get his behavior under control. Guilty that secretly I was looking forward to him going in. Guilty that I am mad at him so much and that I am mad at my husband because it feels like he wants him to go in a little too much. But even with all this I was thinking I had things in much better hand than last time.

Then I got the phone call that there would likely be a bed this week or next. Boom. My stomach immediately went into knots and has stayed there since the call. My mood darkened and has also stayed there. I didn't go to a work meeting yesterday because I felt like I would be unnecessarily irritable and figured it was better to stay home. Now, though, I'm not wanting to go out at all. I forced myself to go to knit group last night which was good. I felt better afterwards for sure. Thanks Jenny.

Today the call came that the bed is ready and we have a move in date. The good news is it comes after Marcus's birthday on Sunday so we can celebrate that at home. It's all good news really. So why do I feel so awful?