At wits end

I just can't figure out how to deal. For the past few days Marcus has gone over the top with behavior. He broke into my home office (yes we live with locks on the doors) to get candy he bought with what I know now is stolen money. I learned today when he came home from time with his "skill builder" (a name I don't understand) with a bag of groceries that he had rummaged through the drawers in my office and found a grocery gift card. He bought all sorts of cupcakes and desserts and a steak. Then, as I was barely handling my anger, he smashed the living room coffee table into pieces. He says it was an "accident". I think this means that he didn't do it in anger, but this was no accident.

I can't think of what possible consequence I should give him. I grounded him from his computer. But this isn't going to do anything. He knows what he did was wrong and says he feels guilty, but I know the behavior won't stop. He can't help it. So what am I supposed to do with my anger and his breaking into my office and breaking my coffee table? I'm sitting in my office avoiding him. Clearly not the right answer, nor is it quality parenting.

My husband left mad earlier (before the coffee table incident) and went to hang out with friends. I will need to write a different entry about the toll this has all had on our marriage. I'm too upset right now.

Sorry for rambling, but this is a spur of the moment writing while upset kind of entry. Any suggestions about what consequences I should implement would be greatly welcome. I'm at my wits end.

The best laid plans

I recently decided to take a trip to LA to see my brother Rob. He is two years out from a brutal treatment for stage 4 inoperable head and neck cancer and I was craving spending time with him. I sometimes get lonely in my house in spite of the activity and noise level. When you live with two people with Tourette, OCD and ADHD, you sometimes feel like the odd man out.

Anyway, the point of this entry is that well laid plans can backfire. Marcus was accepted into Camp Hacamo, a camp for kids with disabilities like his, for the week of August 14^th. He went last year so I knew he could handle it. This seemed like the perfect week to go visit Rob. Marcus would be at camp and this would give Morris five solid days alone in the house. I could visit Rob and not feel guilty about putting all the work on him. So, I leave that Sunday. I had a nightmare travel day, but arrived safely. Saw Rob first thing and spent a lovely day at the beach. I love the Pacific Ocean; it is soul healing for me. I even called Morris from the beach to say hi and to let him hear the ocean. He seemed a bit distant, but the call was nice.

When I got back to Rob’s after the beach, I saw there was a message from Marcus. He got kicked out of camp on the first day and was home. What!!!??? Evidently some kid called him a name and he went after him with a stick. No one was hurt, but they kicked him out. He had been home already when I called Morris from the beach. Morris didn’t say anything because he didn’t want me to worry. What a sweetie. But of course, not only was I worried, I was now riddled with guilt. Here I was enjoying the Pacific and Morris was having to juggle work and Marcus home all day for the whole week. That’ll teach me to take a vacation.

The Crash

The days following Marcus’s admission to residential treatment are a blur. My husband and I spent the time looking at each other and saying, “what now?” We had been so used to not being able to leave the house that it took a while to realize we could now. We went through a bit of a honeymoon period where Marcus was doing really well and we felt sort of free. What I didn’t realize was that the honeymoon period wasn’t for Marcus, it was for me. Once I realized that they weren’t going to call me to come and get Marcus like every other place had done, I crashed and crashed hard.

It took until January for the crash to happen. Marcus went into residential in November of 2007. We were able to visit him on Saturdays and he was allowed to stay overnight for Thanksgiving. After that, he got to come home every weekend. Sometime in January I fell into what can only be described as a deep depression. I spent months on my couch. I went to work for meetings and class, and then came right back home. I never told a soul what was going on. Morris was doing the same thing. I began to struggle with my temper at work. Mind you, I had never been known as a quiet or demure faculty member, but I took thinks up a notch with making sure everyone knew my opinion. And my opinion was always negative. And of course I was always right. My normally thin patience with what I considered stupidity was completely gone. I said some horrible things. I didn’t think they were horrible at the time, but I do when I think back. It was the worst semester of my career. I considered quitting.

Around April I began to say to myself, “I think you are in trouble”. It took me a few weeks to let my counselor colleague and friend know that I was struggling. She gave me a referral to a therapist. Therapy again! Ugh. I danced around her card for a few weeks before finally calling. Another therapy road begun.

An answered prayer

By October 2007, my husband and I were over the line. What that line is I’m not sure, but we were over it. We barely made it through each day – two hours of in-home tutoring, work, taking turns restraining Marcus, in-home crisis intervention. It was all just too much. I had long past being able to cry. I prayed desperately for help every night. I’m not at all religious, in fact I don’t believe in religion, but I do believe in God. If I had any doubts, subsequent events erased them.

It seems now like everything happened all of a sudden. One day I was in desperation and the next, Marcus was in residential placement. I can’t remember now how long it actually took, but it was a matter of days. A CSE meeting was called and our waiver social worker agreed to go with me. I was so scared. I had met with a mother who had gone through similar circumstances and she had allayed some of my fears about residential. Still, I couldn’t get over the thought that it meant I was a terrible mother. I mean, he was only 10!

I went into the CSE not knowing what would happen. The chair was seasoned and surprisingly caring (not always my experience). She must have seen more in my face than I realized was there. In what seemed like minutes, she was telling me that Marcus could go into placement that very afternoon. They called Crestwood and they said to come over at 2:00 that day. We knew this might be possible and had prepared Marcus (we'd been for a tour; Marcus ran away from staff). He was unusually ready. Looking back now, I should have seen that as him telling us he needed this badly.

I drove home numb. Soon we were in the car with his suitcase and comforter.  Then we were in the housing unit and staff were showing me his room. Marcus made his bed, unpacked his suitcase and abruptly said, “Okay, you can go”. I looked at staff for guidance like I did when my kids went to kindergarten, “should I go now?” They indicated yes. Next Morris and I were in the car driving home. We were silent except for occasionally noting to each other how quickly he was ready for us to leave. We got home and sat on the couch. We stayed there for weeks.

Park Ave Fest

In contrast to my last post, Marcus was awesome at the Park Avenue festival today. I prepped him a bit by asking him to imagine how nice it would be for a mom and her son to walk down the avenue together taking in all the artwork and crafts (a kind of impromptu social story). I could see a light bulb go off in his eyes. I had a feeling it would be a good walk and it was!

He was really charming as we walked down the street looking at booths. He pointed out jewelry he thought I would like, found some purses for me, and found some really cool handmade soap that we came back to buy on our way home. I didn't have to say no or call his name to find him at all. What a pleasure.

We met my friend Julia half way through for some food and he was a real gentleman with her. Some too loud voice and some interrupting, but he was on his game. On our walk after eating, he stopped for a free sample of mango smoothie. Imagine my pride when he came back with three, one for each of us! Marcus really is a sweet young man. I hate that that part gets overshadowed by his behavior so much. I almost forgot that we caught him peeing out of his second floor bedroom window this week!

Had enough

Here's something I wrote when I first started brainstorming writing about Marcus. I can see how frustrated I was at the time and that this was during the time that Marcus was still living in residential placement but home for the weekend. Sometimes Marcus just plain gets on your last nerve.

10/3/09

So I’m sitting here with Marcus in the living room while he watches anime. His relentlessness is particularly irritating today. Food, mainly anything with sugar, the explosion of activity during commercials – all make my temper come to the surface. I lost it and yelled when he jabbed his “wand” toward my face and loudly cast a spell. He hates it when I yell, but I’d just plain had enough. He was able to tell me he hates it when I yell and came over to touch my shoulder. I softened and touched his arm. Crisis over.

That he could tell me in a calm voice is already incredible growth for him. It wasn’t that long ago that things would have escalated to a full on violent tantrum with property damage and restraining him. I can’t express how grateful I am that we don’t go there anymore. Things won’t be perfect though. I don’t know why I keep wishing they will be or keep thinking things won’t be as hard as they actually are. Missing him being home makes me think we can maybe do more than we can.

I want to visit my brother Rob at Christmas. His recent brutal treatment for stage 4 cancer and the miracle of it working makes me want to spend more time with the other parts of my family. My trip this past summer to help him cope with the treatment gave me a profound understanding of how important family is and of how much I have missed by being so far away. Morris can’t (won’t) go and I keep thinking I could handle Marcus on my own. But last night when we took my son Eric out for his 21^st birthday I realized it would be harder than I would want to deal with alone. 

Marcus couldn’t wait for the table. He needed the distraction of my iphone where he could watch anime but he still needed close supervision and argued about where to watch it, whether he could sit or stand, and complained loudly every few minutes that he was hungry. He did go outside at one point to yell, hit a light post, and shake a chair – all appropriate expression of his frustrations. And again, it was a lot better than a full on outburst where chairs and other objects would go flying. He talked over us, interrupted the waitress repeatedly with loud (too loud) talking about his own questions. He is still a long way from understanding social cues, especially around conversation. I don’t know how you are supposed to teach someone how to interact when they don’t learn it by participating in multiple events as they grow up. Morris figured it out but he still struggles with too loud a voice and with the “correct” behaviors for different situations. He’s become very good at observing and then mimicking what he sees. How did he learn that? He wasn’t diagnosed growing up so he just figured things out on his own. Will Marcus ever learn?

Summer From Hell Chapter Two

Okay, I'm going to finish up this entry today.

As my previous post suggested, after we returned home from Johns Hopkins life got traumatic for us as a family. Marcus was clearly in crisis. He collapsed into tantrums many times daily. The tantrums were different than we had seen in the past. Something would come over his face and you knew you were in it for a good 45 minutes. We tried everything we could think of to prevent getting there, but somehow we ended up in screaming, hitting, and destroying property. All of the strategies we had used in the past no longer worked. The look that came over Marcus's face was pretty frightening. You knew that "Marcus" was not there right now. Some other scary and violent person had come out and was going to be heard. At lucid times, Marcus would talk about feeling taken over and being scared when it happened. He hated when he slipped into this space. I knew when a tantrum was over because Marcus would collapse into sobbing tears saying he hated his life. It was heart wrenching. Often we all cried.

Morris and I took turns being home with him. I had to start going into work mid-August and then back all the way in September. Thank goodness my work does not have set hours other than meetings or class. Morris needed to get some time off for September but ended up getting laid off. They said he had too many family problems. We felt like prisoners who got short furloughs to go outside. We told no one.

Since he had no school to go to, the district sent in home tutors. What a disaster. First it took three weeks into the school year for a tutor to show up. When she did, she had no idea how to work with a child like Marcus. For example, her big science activity was to put a dandelion in food coloring!!! What?! This was a gifted 5th grader and that is a pre-school activity. People don't get that Tourette Syndrome is not a cognitive or intellectual disability but a neurological disorder. Needless to say, he ran circles around her. I complained after two days and they sent someone else out. He was at least at grade level.

Help did start to come our way, however. Because of the change in Marcus's diagnostic code from Other Health Impaired (OHI) to PDDNOI (a garbage can diagnosis), he became eligible for another level of services, including the Waiver program. We had a social worker come three days a week for several hours to help us develop new tools to work with Marcus. She got a show for sure, but she was an incredible help. At first it was my worst nightmare to have someone come over. We were used to isolation and not telling anyone what was going on. She turned us on to a behavior program called 123 Magic that I thought would never work, but darned if it didn't! The waiver social worker was a godsend as well. Marcus would be eligible for skill-building services and even some respite for us. It took a long time to get going though and we ended up with Marcus in residential placement before any of it kicked in. But she came with me on the big day of the CSE meeting where we got residential placement. Going to residential will be another story.

It's hard to describe what these few months were like. I'd had traumatic experiences before with my son Eric when he was a teenager, but nothing prepared me for this. I simply went numb. I put one foot in front of the other and walked through my life dead to emotion. I don't think I would have survived if I'd let my emotional turmoil come to the surface. I'm terrible at asking for help and so I didn't. I'm supposed to be able to handle all this, right? I'm the capable one. I suppose I "handled it", just not very well.