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.