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.

The Summer from Hell

This one is scary for me. We'll see how far I get.

We entered the summer from hell upon our return from John’s Hopkins. One way to illustrate how those two months felt is to listen to Los Lonely Boys’ tune “Heaven”.

Save me from this prison

Lord help me get away

Cuz only you can save me now

From this misery

I’ve been lost in my own place

And I’m gettin’ weary

How far is heaven

And I know that I need to change

My ways of livin’.

How far is heaven

Lord can you tell me

I’ve been locked up way too long

In this crazy world

How far is heaven

And I just keep on prayin’ lord

And just keep on livin’

How far is heaven

yeah lord can you tell me

how far is heaven

I just got to know how far yeah

How far is heaven

Yeah Lord can you tell me

Cuz I know there’s a better place

Than this place I’m livin’

How far is heaven

And I just got to have some faith

And just keep on givin’

How far is heaven

Yeah Lord can you tell me

How far is heaven

I just gotta know how far yeah

How far is heaven

Yeah Lord can you tell me

How far is heaven

I just gotta know how far

I just want to know how far

Now that I’ve transcribed the lyrics I’m not sure I can or should write any more about that August and September in 2007. My husband and I were prisoners in our own home dealing with multiple violent tantrums a day. Marcus was out of control in the extreme. We were hit, kicked, spit on and cursed at. Nothing we did seemed to make a difference, in fact, things got worse. What was he trying to tell us? In the end, what he was telling us was that he needed more than what we were capable of giving him at the time. This stands as the single hardest realization I’ve had as a mother – I couldn’t do it.

I’ll have to come back to this later. Too painful.

Bitch

The bitch story occurred long before we learned Marcus had Tourette syndrome. I don’t remember if he had said the word before the day we went to Wegmans (a local grocery store chain) or not. Marcus would have had to be 2 years old or thereabouts. He was still young enough and small enough to ride in the grocery cart.

We had finished our shopping and were in the check out line. I had spent the majority of my shopping time putting back items Marcus had taken off the shelf and put in the cart and telling him “no you can’t have that”. All kids do this sort of thing, but the frequency and intensity with which Marcus asks for stuff is pretty amazing. The check out aisles are really tight at the East Avenue Wegmans and so when you are at the cash register, you are right on the candy/gum shelves. Needless to say, Marcus went nuts. When I said no and put stuff back he started. “Bitch … bitch bitch bitch bitch bitch … bitch (said in a sing song pattern).

I was completely shocked and froze in place. Oh my god! And of course he was shouting this as loudly as he could. All heads turned toward us and all the women in the store, especially the Black women (remember Marcus is biracial), looked at me. Their eyes said, “well, what are you going to do about this?” Then … “what a terrible mother she must be that her son knows that word.” I was completely freaked. I didn’t know what to say or do and all my attempts to get him to stop just made him say it louder. All I could do was finish as fast as I could and run, literally, run from the store.

He used the word a lot after that. I think he loved the sound of “b” combined with “itch”. We tried substitution with similar words (batch, pitch) and it worked sometimes. Substitution can be a pretty effective strategy with kids with Tourette and OCD. Marcus needed to say the sounds and the forbidden nature of the word made it irresistible. He “needed” to tear books or push over the toddler. Finding other things for him to tear (I try to always have paper around for him to tear), or letting him slap my hand when he wants to hit someone have worked with him. There are always those times when it slips out though. The two elderly ladies in the hospital elevator a few years later were pretty shocked when “bitch” slipped out of an adorable 4 year old boy’s mouth. I wasn’t embarrassed that time though.

Walking and talking

My friend Julia got a chance to see what it's like to spend some time with Marcus this weekend. Certainly, his energy and sense of humor are wonderful to be around. What I think she noticed, though, is the incredible amount of energy it takes just to spend time with him. In the hour long walk in the park, he must have talked about 200 different random topics, all at the top of his lungs.

Marcus doesn't regulate his voice tone according to context. He is loud all the time. And I mean all the time. We saw the new Harry Potter movie this weekend and everyone in the theater knew what Marcus was thinking. I get self conscious but Marcus is happy as a clam. I think that's good. I always have to remind him that I am standing right next to him. I've grown used to it, I suppose. I only notice now when we are in public or out with a friend.

I am not always patient with Marcus when I have a whole day with him. Some days it only days five minutes from the time he gets up before I've had it with "Mom, just so you know..." or "Mom, what would happen if...." The what if questions really get to me. The circumstances are so random! What if a spider jumped in my juice? What if clouds fell from the sky? I don't know how to communicate in words so you can feel what it's like to have hours and hours of these kinds of questions. Some days I say to him, "I just can't spend another day with you asking me ten thousand questions about ten thousand random topics". It makes me feel like a bad mom. Aren't we supposed to cherish every word our children speak? Celebrate every idea? Whoever made up those rules never spent a full day with Marcus.

Heater noise

Today's entry is a current story, from today actually. The heater repair guy just left. We called him because there has been a horrible rattling in our furnace and we were thinking that we'd have to bite the bullet and get a new furnace. Good news is we don't have to. Why the rattle you ask? Marcus.

Marcus has a thing with food and spends a good deal of time and energy thinking about food, sneaking food, and hiding the remains. We have found some fairly disgusting remains over the years in some really creative spaces. Never did I think of the ductwork! The heater guy found soda bottles and popsicle trash buffeting against the fan. Only at my house:).

What this story from today prompts in me is to talk about the never-ending, always frustrating, trail of destroyed house and yard we have. There is simply nothing that Marcus can't take apart. There is no toy, and I'm not kidding, no toy at all, that has not been repurposed (read destroyed) into something that fits what's going on in Marcus's imagination. Even toys I had kept clean and intact from Anna's early childhood days became wands, capes, or potions. My yard is littered with sticks that didn't meet the criteria for the perfect wand and my trees and bushes have gaps in the branches (so do my neighbors'). My collection of hundreds of children's book all torn (turns out tearing books and paper is a tic). Any tiny curled up piece of wallpaper is now a huge torn out swath. My stair railing is broken into pieces and the banister itself is shaky. There are broken tiles in my new kitchen floor, holes in my walls, tears in my couches, and missing screws from anywhere there is a screw. Turns out Marcus didn't have an uncanny knack for finding lost screws and nails - he was taking them out!! I only discovered it when I began to notice missing dresser handles or the toilet started to wobble.

This summer I got sick and tired of living in what felt like a dump. I spent hours and hours sanding, painting, and sprucing up. Larger carpentry repairs will have to be done by a professional though. Here I was thinking I might actually be willing to invite people over to my house again when one day I hear loud smashing noises coming from the back yard. I called out to Marcus "Hey, what are you doing?" He answered, "Playing Thor." My heart dropped, Thor! In whose universe does my son find a construction grade sledgehammer behind the garage?! The carpenter will now have to add the big gaping hole in my fence to the list. Know any carpenters I can put on retainer?

Hospital

By the end of fourth grade, even the BOCES self-contained school let us know that Marcus would not be welcome back for fifth grade. Of course, they didn’t say it like that. It went something like, “We don’t feel like we can serve him well anymore” or some other similar cover for “we don’t want him”. The main point was that he had nowhere to go for fifth grade. Our options were residential placement or day treatment. But, as was par for the course, there were no spots anywhere and no one to help us. The no help thing was by far the most frustrating part of raising Marcus so far.

Dr. Mink, again our hero, suggested getting a consultation from Dr. John Walkup at Johns Hopkins. We were desperate so made an appointment to see him. I hoped that he would help us avoid residential. We packed Marcus up and drove down to Baltimore for an overnight stay. Meeting Dr. Walkup was like coming home. Here was someone who worked with kids like Marcus everyday – nothing we said surprised him. But what about the time he took a broken table leg and smashed up a car in the school parking lot? Or when he cold-punched a teacher’s aide and knocked him out for a second? He was totally unphased. Plus, he “recognized” my husband Morris immediately. It was the first time Morris was treated with respect and talked to in a manner he could understand without being demeaned. And, more impressively to me, he “saw” me and knew exactly what I needed to hear and know. We left this meeting with hope for the first time in years. We left with an appointment to come back for a possible hospital stay.

That July Marcus was checked into the Child Psychiatry Unit at Johns Hopkins. I was a wreck. I had experience with locked psych wards before with my older son Eric. We ended up spending a month as we tried desperately to find out what was going on with Marcus. Why was he so violent? Why did he have so many scary tantrums?

Institutional rules and expectations, behavior plans, etc. are set up to deal with 80% of folks. Marcus is in that other 20%. So, while I learned a ton and we came up with a more detailed diagnosis and medication regime, Marcus had an awful time. A mother should never have to watch her child being dragged by four security guards into the locked quiet room to be given forced Haldol injections. It remains one of my more painful experiences. Especially since, in my opinion, it could have been avoided. Marcus had a tantrum when he learned that he wouldn’t earn the full 100 points for that day’s behavior chart. His OCD had kicked in and he was determined to get 100 points. The floor nurse decided to ding him a couple of points because he forgot to raise his hand before stepping out of his room. She tried to tell him that he would still be “gold” level and get all the privileges but he was inconsolable, resulting in the locked quiet room episode I witnessed (one of many by the way). How hard would it have been to give him a point?!

A month went by with me driving into the hospital everyday from my hotel, visiting with Marcus during visiting hours and trying to find something to do in a strange city while being traumatized. I felt like a zombie walking through my days. I started smoking again. Finally the day came for us to go home. I took Marcus to the aquarium and for some ice cream. That night at the hotel was a harbinger of the next few months. He had tantrum after tantrum where I had to restrain him multiple times. I was surprised the hotel didn’t call the police. Finally at 4 am he went to sleep. I tossed and turned until he got up. The long drive home was pensive for both of us. Little did we know that we would be doing the tantrum dance for the next few months until he was placed in residential placement (turns out we needed it after all). But that is another chapter. 

The "n-word"

Somewhere along the way in elementary school, Marcus heard the “n-word”. As is common for people with Tourette who also have copralalia, he picked up the word and became obsessed with it. Of course Marcus has copralalia. Poor guy has everything possible for people with Tourette syndrome: complex vocal and motor tics, copralalia, OCD, ADHD. Not everyone has all of these and not everyone has copralalia, contrary to folk knowledge based on caricatures in popular culture. Marcus has to cope with it all.

Back to the n-word story. We got some feedback from school folks that he had been using the word while doing some name-calling. One day in a tantrum, he called his father the n-word (I never use the actual word due to my politics about race). Then one day when my husband took him to a local city park, he called a kid the n-word and got punched in the face. My husband dealt with the family and they were okay afterward.

He then came up with a plan to stop Marcus from using the word: he rented the whole Roots series and sat Marcus down to watch it. I loved this idea! Marcus only got to the scenes about the Middle Passage before he yelled out, “Enough! Okay, I get it!” Had to smile.

He stopped using the word for a while, but it did come back, mostly at school. Such is the way of involuntary tics.

The "Just Walking" Toddler

There was a time when Marcus was about 6 years old that he became obsessed by what we ended up calling the “just walking” toddler. You know the one. They perpetually look like they are going to fall over. Marcus could spot the kid from a mile away and he’d make a beeline to the kid and push him or her over. The parents were aghast and inevitably looked at me like I was the worst parent in the world. I developed a keen eye for spotting the kid before Marcus and quickly ushering him away. But when I didn’t react in time, the kid was doomed. 

We had some scary moments. One child hit her head when she fell and cried horribly. Once he pushed a child at the top of a slide; luckily he wasn’t hurt. The look parents would shoot me hit me square in the stomach. There really is nothing to say at a moment like that. If I say he has Tourette etc., they just think I’m making an excuse for bad behavior. I usually just grabbed Marcus up and rushed him away to the car.

I know what he’s thinking because I believe we all think things like that. “Just fall already” or “What if I just pushed him a little?” Marcus thinks then does, no hesitation. I don’t know how you teach that hesitation for think time where we learn not to act on our thoughts. Even now at 13, he impulsivity is incredible. Sometimes he thinks before he acts but that doesn’t stop him from acting; it just takes longer. Dr. Mink calls them “implusions” – compulsion and impulsion combined. Makes total sense to me.

The Sweet Part

I want to briefly share some of the good part of raising Marcus. He can be so sweet. And he has come such a long way from six tantrums a day where we have to restrain him!

Today, given it's summer break, he slept in until 11:30 (peaceful time for me). When he got up, he decided to make pancakes. Yes, I have come to let him cook (only when supervised). I know, it probably seems foolish, but he does a pretty good job of it. Makes a mess, but the food is good and he doesn't catch anything on fire. He made some for me without even asking! And they were delicious. He was so happy to have pancake mix that he came to me several times to say thanks for buying it and to kiss me on the top of the head.

Some moments are true treasures.

The Medication Decision

Having spent a good portion of my life as one of those organic hippy types in LA, putting my young son on powerful medications was a very difficult decision. I was so torn. Finally, I asked my friend Gerald Coles what he thought. He told me that what mattered was the quality of Marcus's life. Was his disability negatively impacting his quality of life? If so, then medication may help. That answered my question. The quality of his life was definitely impacted negatively. By kindergarten, he was being suspended from school (totally illegally by the way), bullied, and, in the end, isolated from his peers in a converted closet with a paraprofessional. This process will be another episode, but suffice it to say now that he was being damaged.

We started with clonidine as  a way to deal with tics. But, tics are the least of his problems. It's the OCD that most affects his life. The first anti-anxiety med worked for a while but then increased his aggression. That was a big mistake because aggression was already a huge deal. The day the museum called the police and paramedics because he lost it (huge tantrum that included destroying the manager's office and peeing on his chair) was the last day he was on that med. He's been on increasingly higher doses of Zoloft since.

Unfortunately, things got much worse as he got older until our amazing Tourette's doctor, Jonathan Mink (a hero), was stumped. The story of how we ended up in the child psych ward at Johns Hopkins will be another entry, but we left there a month later with Marcus on the some of the scariest and most powerful medications yet. He now takes clonidine, Zoloft, Haldol, and lithium. No drugs for ADHD since he's the same "bounce off the wall" kid on or off Ritalin.

All this to say the medication decision is difficult and ongoing. As he grows (at thirteen he is six feet, 225) and develops, dosages change. Behavior and emotion change as well. Some medications stop working or work badly and need to be changed.

Change. That one word pretty much covers life with Marcus. Plus change, good or bad, is bad to Marcus. Yet change in inevitable. You get the idea.