Day one

The week didn't start off too well. Marcus had his "skill-builder" appointment in the morning but he was brought home early. A good friend gave Marcus a $50 gift card to buy "gifts". She stated so specifically. As you might have guessed, Marcus wanted to go to an all-you-can-eat buffet and eat himself silly. I told him no. After a hundred turns where he tried to get me to change my mind that ended with a loudly stated "because I said so", he left. It went downhill from there. He called and texted me obsessively with increasingly outrageous ideas of things to buy and a pronounced attitude. When the skill builder, Justin, told him to stop, he started banging on the car window as they drove. Then he repeatedly reached for the radio via the gear shift. I think he scared Justin. Having been driving while Marcus was in a major tantrum before, I don't blame him. Safety gets precarious to say the least. Anyway, they came home early and Marcus stomped around calling Justin all kinds of names. He picked up a table knife. I took the knife and sent him upstairs and politely asked Justin to leave after hearing his version of the story. Needless to say, he won't be back this week. So much for the building of skills.

Holiday Arc over

We made it through another holiday arc. That's what I call the time between Marcus's birthday in September and Christmas. He goes up and up until Christmas then evens back out. I won't say he goes back down because there is no down:). Eric came again for dinner Christmas eve and for presents on Christmas day. Even he couldn't believe what it's like to be around Marcus. I'm so used to it (sort of) that I no longer see how intense he is. What Eric doesn't see is that he's intense too and that he also never stops talking. Between the two of them it's amazing I can think at all.

Dinner went well and everyone loved their gifts. I gave Marcus a lego Hogwarts, much to my husband's dismay. In the past, Legos end up everywhere. But Marcus had said he would put it together if there was a pattern and darned if he didn't put up the whole thing in one day. It's actually pretty cool.

I am now facing a week of just Marcus and me until Morris gets home. Pray for me.

Mooning

Marcus mooned a bank of windows into another high school classroom last week. While you might laugh, schools take this sort of thing really seriously. It moves quickly from funny to sexualized behavior, quicker than you might think. This is especially true for Marcus given his reputation now as a dangerous kid. Luckily, all that happened was I got calls from the teacher and the principal. Well, not all that happened. I did a fair amount of yelling and he was teased pretty hard the next day. Not sure whether he connected the two things - mooning and teasing - but he didn't get violent in response. He managed to handle a couple of things without getting violent in response. All good things for sure.

I hate to say it, but Marcus is dangerous; it's not that the school has just labeled him that way. I do think that they jumped to conclusions and he will be labeled the bad kid for the rest of his time there, but they didn't do so without reason. He has done over $2000 in property damage and he did hurt people that first week. I think his unpredictability and uncontrollability drive them crazy. Schools like it when their behavior plans work and those plans just don't work for Marcus. They never have. They (schools not the people at Halpern) don't seem to have much to draw on besides behavior plans.

Cool news

I'm scared to say it's a trend, but Marcus has had a string of amazing days. He had a really bad day last week when he broke a $1000 window at school and got put on a restitution plan. Not only does he have to give over his Christmas money, he has to work off the debt. All totaled, he has done over $2000 in property damage since the beginning of school. But this wasn't the point of today's post...

Since our school meeting and a very stern (maybe angry) talking to by both my husband and I, Marcus has done a few amazing things. First day afterwards, he cleaned up the kitchen without being asked! He even took the trash out. He had several good days at school in a row, even one where the one-to-one aide used the word amazing. He's been polite and respectful. He's still relentless, but it feels more like a typical 14 year old kind of thing. He's even been working on math at home in a curriculum book he asked for. Can I get an amen!

Exhaling cautiously.

Day Three of Thanksgiving break

On day three of Thanksgiving break and my husband gave me one. He's working today, but took pity on me and came home for a few hours so I could take some time at one of my coffee shop hideaways. My plan is to work on my book, but I needed to vent a bit about Marcus.

You'd have to be in my house to know how much energy it takes to use a calm voice after days with Marcus. For one, he never stops talking. Mix in some annoying tics along with the chalkboard grating phrase "Hey mom" that is always followed by "I've got a question" and you can get the idea. I know that most parents, mothers in particular, know how annoying it can be when your child calls "mom" out over and over again. Now ramp that up times three and you'll know how Marcus is. It's to the point this break that I literally cringe when he says it. It's all I can do to answer in a low, calm voice. To be honest, I am not that successful as the day wears on.

It was worse yesterday for the actual Thanksgiving dinner. For one, the ritual of Thanksgiving is deeply important to Marcus. Things have to happen in just the right way or he gets upset. I narrowly missed a tantrum because I didn't have him take out the giblets. The day went fairly well aside from the hundreds of "hey moms" until Eric (my oldest son) came by with his dog Apollo. I was ready for the two of them, but not for my husband not being there. Morris got a call for an emergency at work and had to go. He ended up missing dinner. It's not like I couldn't deal with the two of them; it's that Morris mediates Marcus a bit and can help with Eric. See, Eric talks all the time too. He doesn't have Tourette, he's just a talker. Luckily, he came somewhat prepared to handle Marcus so the two of them talked at each other for the first hour or so. At least until Eric ran out of patience. Then the bickering started. I summoned the calm voice from somewhere deep and made it through dinner without losing my temper and yelling. Not too bad for an old lady. Marcus can usually handle most any situation for about 2 hours. At just about the two hours mark the cursing started and it was time for Eric to go.

I'll enjoy these few hours with no "hey moms" and replenish my ears for the next round. Thanks honey:)

Conundrum 2

I've been hesitant to post the past few weeks because I started to feel like I was only posting negative things. The bad news is that a bunch of stuff has happened and that it is mostly rough stuff. Our downstairs bathroom door is off its hinges, for example, due to Marcus flinging it open past the hinge capacity. At 6'2" he doesn't know his own strength. It was an "accident". He's had some rough days at school, but he did finally agree to work with the new one-to-one. Not sure what they meant by rough days, but one report was that, while he worked well with the new one-to-one, he didn't spend much time in the classroom. Not sure I'd call that a rough day. I think it's unrealistic to expect him to do both things well at the early stage of a big transition. And for Marcus, all transitions are big.

I had another "bad mom" day the day Marcus had off school for Veteran's Day. By early afternoon, I was totally fed up with him. He literally exhausted me with talk. I think in his mind, he was "having a conversation".  He and I clearly differ in how we define conversation. What I experience is a non-stop, stream of consciousness monologue where my only turn is to say "yes" or "hmmm". The speed with which he changes topics is dizzying.  I even tried to go out together after feeling guilty that I don't take him out much. By the time we got back from a park hike with the dog, I thought I would lose my mind with impatience. It might not sound bad to you reading this because it's very hard to explain in writing what it is like to spend time with Marcus. Trust me that it's exhausting and patience trying. I did my best to be patient and responsive but I fear that I ended up being short and shut down.

We are full on into the "holiday arc" wherein Marcus gets increasingly anxious from Halloween to Christmas. Anna will be coming home for Thanksgiving next week which has him pacing and obsessive already. He'll be a tidal wave of excitement by the time she walks in the door. I'll be surprised if she remains standing.

Another hospital trip

We had another mental health arrest yesterday, followed by hours in the emergency psych department waiting for them to do nothing. Here's what happened as I have pieced it together. Marcus's former therapist has been working as his one-to-one aide while they hire and train a new one. This is an amazing service Joe is doing for Marcus given he's a social worker. Unfortunately, any replacement to Joe will not be Joe and the person they have hired has become a target for Marcus. He doesn't like him (read - he's not Joe). Marcus has known Joe for many years and feels safe with him. The new person is new and doesn't know Marcus and what he needs to feel safe.

Yesterday, Marcus started off the day agitated. I think it was because it was Halloween and he wanted to go trick or treating to get candy. But he focused his agitation on the new one-to-one and became increasingly threatening. Remember that at 14, Marcus is 6'2" and, given they don't know him well at the new school, this size can be scary. There was a "sub" counselor who hadn't worked with Marcus before although she had met him. At some point, Marcus broke a CD cover into shards and pointed them at himself and others while threatening to cut out kidneys. This became "homicidal behavior" and thus warranted the police call. I knew he was just talk and asked that they let me come get him, but it became an unstoppable policy and we ended up in the emergency psych ward. Of course, Marcus was completely calm and the ED docs did nothing. Eight hours wasted. We made it home in time for Halloween although I did not allow him to go trick or treating. I did say he could hand out candy in his costume. He got all set up on the porch, ready to scare kids as they came up. Not a single person came to our house. I couldn't believe it. It was heartbreaking to see him on the porch like that.

We met this morning with the "team" and it seemed like we were going to start right where we left off: he hates the new aide and wants him gone. Apparently Marcus's strategy was to act out horribly enough for the school to fire the new aide. We assured him that he would be the one gone, not the aide. I was just about to lose hope when Marcus blinked - he would agree to work with the new person if he could have a soda at the end of every day (he really is a young 14!). Wow a space for compromise. Then he was able to talk about how much Joe gets him and how he doesn't want him to leave. It was really sweet. Of course, the road will still be rough but there was a small space there. We'll have to see what happens when the new one-to-one comes back from his few days of training.

Conundrum

I spent the week trying to figure out whether or not I should take Marcus to a new colleague's house warming party. Here's the conundrum: Marcus is difficult to take anywhere, especially a place where there are desserts. But, he likes to go out and he should be able to do so. I feel like a horrible mother that I don't take him out places because it's so much hard work. I just wanted to go to the party and relax a bit. I went back and forth with yes he can go and no he can't. By the time Saturday came, I had decided I would take him. Morris works on Saturdays so my choice was to leave him home alone or take him. I just felt too guilty leaving him at home while I was at a party. Truth is though that I didn't want to take him. How terrible is that!? And selfish. Mothers are supposed to be selfless, right?

Morris ended up coming home for a few hours so I went to the party alone, promising to bring Marcus home a plate. I knew he really only wanted to go for the food and that he would be bouncing all over the place. I was glad I didn't take him in the end. There were two kids who came later and they sat nicely drawing while their parents enjoyed the party. NO WAY Marcus would have done that. To be honest, I was worried about being embarrassed. God that feels awful to write. Plus, I worry that people who know about Marcus's issues are afraid when he's around. That feels bad to write too.

Bad mother syndrome sucks.

A string of good days

Marcus has had a string of "good" days since we made the changes. Of course, he is still himself which means he still needs to get his tics out and pace, but he's been proud of himself. I'm proud of him too.

Traveling back a bit in school history ... seems like a good time to tell the kindergarten story. Marcus went to the Rochester City School District's School #1 for kindergarten. I spent a good deal of time that summer meeting with teachers to prepare them. I gave them the "Teaching the Tiger" book, handed out the NY State curriculum for people with Tourette, and told stories about what had happened and what could happen. Since Marcus has to do things that are forbidden, I told them that, for example, he would pull the fire alarm. They would need to be extra careful in hallways. Putting covers on the alarms would be a good idea. He is really fast, I told them. They never believe the mom. Maybe they think we are exaggerating or that we don't know the things they know, but they didn't really hear me. So, Marcus pulled the fire alarm during the first week. They suspended him.

I was back at the school meeting with them to remind them that I had told them he would pull the fire alarm. Make sure his one-to-one aide held his hand in the hallway. They didn't hear me ... he pulled the fire alarm again. They suspended him. When he came back other things started. He tore paper, he smeared soap in the bathroom, he ran off at recess, he cursed, he made weird noises, he had tantrums and hit other kids - all behaviors related to his Tourette. They called me everyday telling me to come get him.

Next I tried having the clinical psychologist from the Movement Disorder Clinic meet with them. She came every month to talk about Marcus and to give ideas for helping him at school. He pulled the fire alarm. They suspended him. Parents wrote a letter to the principal to have him removed from the school. That one hurt.

We tried every which way to get them to comply with his IEP, to have the one-to-one do the job, and to include him in the classroom. Their response was to move him into a closet. They pushed back the junk, put in a small desk with a toy and left him there with a paraprofessional. I can't even tell you how angry I was that they would so blatantly violate the law. I was at CSE so many times that year I finally ran out of a meeting in tears.

Needless to say, I got a lawyer. Meetings were different, but nothing changed at the school. They wanted him out and they made sure that would happen. He went to a BOCES school after that until fourth grade when he went to Crestwood. That school kicked him out too.

Two days in

This is the second day Marcus has been back to school after his suspension. What a journey. We finally had the superintendent's hearing on Monday morning, followed by the CSE. It was Marcus's first time at a CSE meeting and I was pretty impressed with how he handled it. He was able to apologize to the two women he had hurt during his meltdown. I felt like they were looking at me like "there's the mom of this kid." What I mean is that I felt like I had done something wrong to have a kid who would hit them. It was hard to "read" their faces; I had the distinct feeling that, while they accepted his apology, they didn't particularly like it.

I think we came up with a good plan for him to get back to school. I was pleased that the school seemed committed to setting things up for maximum success this time. We all had to take a step back and realize that we underestimated how difficult it would be for Marcus to transition to high school. The new plan has him in a self-contained classroom (exclusion in exclusion) instead of traveling between classes. There is an empty classroom next to this one that they set up for Marcus as a space to chill, calm down, and get some sensory stuff. The goal is to have him spend more and more time in his actual classroom but starting with having him be at school without incident. So far we have one day down. They also shortened his day temporarily so that he arrives after the bus hubbub and leaves before it starts.

A very cool thing is that his former clinician volunteered to come work as his one-to-one aide. How much does that say about how lovable Marcus is?! I am so grateful to Joe for doing this. It really gives Marcus a fighting chance to be successful.

Cautiously exhaling...

Still on hold

We are still waiting to hear anything from the school district about the superintendent's hearing. It's now 6 days. By law, they are supposed to have the hearing and a CSE meeting within 5 days. Nobody really cares about the law around children with disabilities. There appear to be no consequences. Except on families, of course.

Morris and I are playing tag with staying home with Marcus while trying to work. He has the day off today so I had time for a meeting, a blood test, and now I'm at a coffee shop working on my book (and writing this:)). I suppose I'm "lucky" that my job has flexibility around time. That means I am the person who stays with him while Morris works, missing meetings and any other office based activities. His schedule is tighter. Oh, and in its wisdom, the school scheduled a meeting with me tomorrow morning that I can't take Marcus to. Huh?! Here is a kid who can't come to school due to emotional upheaval and I'm supposed to leave him alone while I come to talk about how they are not ready to take him back!

I've had several phone calls with them. "You know it's not our fault the one-to-one aide quit" "But we do want Marcus back" "We are not ready" I'm completely fed up. I've called the district office everyday to ask about the hearing - no response at all. In the meantime, Marcus is not in school and, in effect, being denied an education required by law. Oh, but it's no one's fault.

From bad to worse

Yesterday, Marcus's high school called the police for a mental health arrest. I got the call after he was on his way to the hospital. Halpern claims they can't manage him. I have no idea what they expect me to do now.

Marcus has really been struggling at the school. Lot's of bullying and he reacts with aggression. I'm not sure what the trigger was yesterday, but evidently he physically attacked five people, two of whom had to seek medical attention. He was out of control. It embarrasses me (maybe shames me) to write this about my son. But my purpose in this blog is to tell the truth so that other families with children like Marcus don't feel alone. And I hope that these stories about school will give educators some insight into their own practices.

Let's remember, however, that the one-to-one aide quit before the first day so the school was out of compliance and, more importantly, Marcus did not have what he needed to be successful. Plus, we learned at the hospital that Marcus had been hiding his medication and not taking it. That one's on us. Halpern staff has only known him for five days so they don't know the real Marcus - the sweet, funny, imaginative young man. Now they only see a criminal; surprising given these are trained professionals in a school for children whose least restrictive environment is day treatment.

Now we are in a holding pattern while we wait for a superintendent's hearing to determine his fate. By law this is supposed to happen within five days but no one seems to follow the law. I feel confident in saying that Halpern doesn't want him. No matter that they are required by law to provide an education for my son and are the only ones around who are trained to do so. It seems very apparent now that Marcus needs the intense support of residential placement again. He would go to day treatment (school) there. Hopefully the CSE will approve that. Otherwise I have no idea what will happen.

Marcus is home and terrified about what might happen. He wants to apologize to the people he hurt. He wants to go back to school. He is completely freaked about juvenile hall or jail. Someone thought it would be smart to scare him straight. Geez, thanks for nothing. What he did is serious and it was assault, and he cannot do it again, but come on. He might be 6'2 and soon to be 14 (this Friday!), but he's very young emotionally and this sort of thing doesn't help. Not sure what will though.

First week of high school

I needed a day to recover from Marcus's first week of high school. He started at Halpern Education Center on Wednesday, September 7. The first day went okay. He had trouble sneezing on people. Needless to say they didn't like it and it engendered grossed out kids. Then someone called him the "f" word (read a derogatory term for gay men). He hit the kid on the back of the head with a notebook. I got a call from the school, but they ended up leaving a message. I wasn't able to find out what happened to the kid who called him the name. I find that usually nothing happens to them.

Day two was a disaster. I was there in the morning for an intake meeting with the psychiatrist. Typical stuff. I saw Marcus and he seemed fine. Well... got a call just before I was walking in to teach my Thursday night class. I heard screaming in the background. Their story was that Marcus had run out of the building, tried to get back in by trying to smash a window. Other kids started to get upset. Some kids tried to attack him, he tried to attack them. He threw chairs and went after staff. He says someone said, "don't sit in that chair or you'll turn into a zombie" (talking about a chair Marcus had sneezed on). He lost it. He ran outside. He rationalized trying to break the window by saying they wouldn't let him back in the building otherwise.

Morris had to go pick him up because they refused to put him on the bus and he had to take him into school the next morning for a meeting. Oh, did I mention the one-to-one aide that Marcus is supposed to have according to his IEP quit the day before school so he didn't have one?! They were real sorry. Now I know it wasn't their fault, but they were still out of compliance and my son was taking the consequences. He had a one-to-one for a reason, clearly. I know Marcus can't behave like this and that we have to figure out a way to deal, but they have to follow the law too. And they have to deal with the teasing and name calling. He's been called the "f" word and the "n" word more times than I can count and so far, the name caller has had no consequences. Marcus feels like no one listens to him. I'd run out of the building too.

Day three went well thank goodness. Here's hoping to put together a string of these.

Trail of destruction

I haven't posted for a few days. There are a couple of reasons. One is that I was surprised no one offered any comments to my last post. I was genuinely desperate for help. Two, I'm struggling. In the past week Marcus has escalated his "accidents". My back door screen is missing, we needed a new fish tank because he cracked the old one by putting a plate down too hard next to it, and his glass iMac computer screen was shattered when he lost control of a big stick he was spinning around in his room. His response was that "it still works!" So not the point. Then his OCD kicked in and he HAD to systematically remove all the glass no matter what I said. He had a full blown tantrum and destroyed his room over I don't even remember what. I know there are other things that I am not even remembering now.

I'm starting to have that numb feeling again. A friend of mine told me today that he thinks Marcus needs to go into a group home. I don't know how I feel about this. I'm surprised that I didn't immediately say or even think "no". Then I'm seized by guilt. What kind of mother am I to even think about placing him in a group home? I'm supposed to be able to do this. But I remember realizing that Marcus needed more support than I knew how to give when we placed him in residential. Are we back there again?

Just as I hit the question mark, Marcus burst into my office making me shriek in surprise. It's midnight and he was supposed to be asleep 2 hours ago. "Just to let you know, the glass in my lamp broke". What? Evidently he was reaching for a mint and caught the cord. Another "accident". I yelled at him.  I'm so tired of yelling at him.

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.

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.

The dread meeting with teachers

Today's story is about the day the pre-school teachers called me in for a meeting to talk about what was "wrong" with Marcus. It's a story I tell my pre-service teachers as an example of what never to do! I know the teachers and pre-school staff were well intentioned, but it counts as one of the most hurtful school experiences I’ve had with Marcus.

He was attending a Head Start pre-school, after just having left a school where the teacher hit him (but that’s another episode). The director was a friend of mine who had developed an innovative early childhood science program that Marcus really liked. We had been struggling with some of his behavior and since we did not have his diagnosis yet, it was a quandary as to why he was behaving this way. He was aggressive to other kids, often refused to participate in activities, and was doing a kind of walk-drop to the floor thing. He would also drop and pick up an object repeatedly. On the positive side, he was the king of the dress up area. His imagination is extraordinary and the scenes he would set up kept kids playing for a long time. He was bossy, though, and sometimes his aggression would scare people off.

So the day in question, I was called to school for a “meeting” about Marcus. I walked into the classroom to what felt like a dozen adults arranged in a semi-circle on one side of the room facing an empty chair on the other side. That one was for me. I felt like I was in a spy movie and this was my interrogation room. I sat down. I remember my friend saying something like, “there is something wrong with Marcus”. My heart sank. They proceeded to list all the issues and the things they thought were wrong. Evidently they had “tested” him and they believed he had a pragmatic language disorder. What?! Had they spoken to him? They went on to say that they were concerned for his safety since he developed the walk-drop to the floor thing. Maybe he had epilepsy? What?! My mind was reeling and my anger rose. I don’t remember now what I said in response but I do remember crying. I know they loved Marcus and were only trying to help but that didn't stop me from feeling horrible.

I left really upset. Was there something wrong with Marcus? Why was he doing these things? I immediately set about getting an appointment with a child neurologist and searching the web for information about epilepsy. I read over the symptoms and some made sense but I still wasn’t seeing Marcus. I don’t remember how I found the Tourette’s page but there it was. Tic disorder…motor and vocal tics…hitting, jumping, tearing paper, snorting…there he was.

Finally telling the story

This blog is a long time in coming. I have a thirteen year old son with severe Tourette Syndrome, OCD, and ADHD. Turns out my husband has the same thing. Life has been an adventure since we learned this diagnosis when Marcus was 4. I want to tell the story from the start while also describing the current goings on in our everyday life. Everyday there is something. Usually something big. I have a book in here somewhere, but in the meantime I want to tell the story in segments that get at the history and the present of life with my beloved child Marcus.

I want you to know first off that Marcus is amazing. He is smarter than hell, funny, and sweet of heart. You can't help but like him. Good thing because life with Marcus is work. And this is an understatement. If you are a parent of a child like this, you know exactly what I mean. No one else quite gets it.

So here is the first story, what we call the "hole boom" story in our house. It happened one day when Marcus was about 18 months old, before the diagnosis:

I don’t get sick often and usually when I do, like most mothers, I work through it. This time though, I was down for the count. I had a 102 degree fever and all I wanted to do was go to sleep. I took a Tylenol and went to bed. It was a blessing that I slept solidly because when I woke up and heard what happened, I was terrified.

Marcus was downstairs with Morris, Eric, and Anna when I went to bed. He was only 18 months old so we had the living/dining room area “baby proofed”, or so we thought. He ended up breaking all the safety stuff, but that’s not the story I am telling now. A confluence of events happened: Anna went upstairs to her room and Morris went to take a shower, leaving Eric and Marcus in the living room. Eric had to go to the bathroom and went into the downstairs half bath. He might have been there for one minute. In that time, Marcus went over to the cast iron grate in the dining room, picked it up and jumped in, falling eight feet to the basement floor wedging himself between the freezer and the wall. Eric heard terrifying screaming and ran to the basement. He couldn’t do anything. In the meantime, Morris was out of the shower and upon hearing the screaming, he went downstairs. He met a crying Eric coming up from the basement saying, “Marcus is dying!” Morris found Marcus behind the freezer. Marcus stopped crying and thrust his arm out asking to get out. The miracle was that he was unharmed. There was a small tear in his shirt having grazed the huge upward facing spikes on the back of the freezer. Later he developed a bruise on his buttock where he must have bounced off the floor.

When I woke up and heard the story, I panicked. Oh my god! He could have died in a hundred different ways. What if he fell headfirst? What if he had gotten impaled on the freezer? I ran through a myriad of scenarios and cried. It was a miracle he wasn’t hurt. We had no idea at the time what was in store for us.

A few weeks later I was talking to my friend and mentor, Elinor Ochs, about a few things and related the story to her. Because she is a language researcher, I wanted to tell her that Marcus’s first two word sentence was “hole boom.” She responded, “Oh a narrative!” When I told her his first three word sentence was “hole danger boom”, she replied that he had a moral stance. If you are not a language researcher, this might not seem funny, but it made me laugh, settling my constant worry about what might have happened.