Graduation photo

My favorite picture from graduation. Marcus is standing next to East's Superintendent, Dr. Shaun Nelms. You should know that Dr. Nelms is 6'3". Yes, that means Marcus is taller! He is up to 7'2"!!!

High School Graduation

I am still a bit shocked that this day has finally come. If you've been following this blog, you know what a long, difficult battle it has been to keep Marcus in school and out of jail. Today he finished summer school and is officially graduating from high school. I can't believe it. I feel happy and proud and, frankly, exhausted. I keep finding myself exhaling big breaths.

Thanks are in order.

Thank you to all the teachers and administrators, from pre-school to high school, who worked hard to love and support Marcus through good days and bad. Trust me, I know well how difficult this can be sometimes. You saw what I see - a smart, charming, funny, sensitive, and caring young man who struggled mightily with things beyond his control. School is a difficult place for those who are not deemed "normal", but you adapted creatively and helped him succeed in spite of a system designed to push him out.

I specifically want to thank the teachers, administrators, SSOs, secretaries, counsellors, social workers, and custodians at East High School for welcoming Marcus into his first general education placement since kindergarten. I mention all these people because Marcus interacted with all of them - daily. Yes, that means he wasn't always in class where he was supposed to be. He made regular rounds of the school to chat and find snacks. You were always there with a smile and reminders to go back to class. This time at East was, by far, the best experience Marcus had in a school. We had two goals coming to East - graduation and no jail. You helped us accomplish this. There are not enough words to thank you.

Most of all, I want to thank my husband Morris Smith. He stopped working so he could support Marcus to graduation. It takes a special strength to commit this much and I want everyone to know how much I respect and love you.

Going to spend some time celebrating this amazing accomplishment before thinking about what's next. I will post pictures of the graduation ceremony when it happens.

So close ... yet so far

I can't believe the whole school year has gone by since I last posted. There is no way to capture the ups and downs of this year in one post, but I'll try to give some you some idea.

Our two goals for this year were graduation and no jail. Given there are only a few days left in the school year, I think it's safe to say we accomplished one - no jail. Graduation is a much more complicated issue.

Marcus has all five Regents tests needed to get a diploma in New York State; no small accomplishment indeed. His schedule is such that all he has to do is pass his classes and he will have the 22 credits needed to graduate. He's simply not going to pass in time for a June graduation. With summer school, he may be able to graduate in August. So close, yet so far.

I have come to accept that he doesn't really want to graduate. It's not that he doesn't want the diploma. It's that he is so happy at East that he doesn't want to leave. As I mentioned in earlier posts, this is his first general education placement since kindergarten. Socially and emotionally, he has thrived. People like him, adults and kids alike. He has wonderful relationships with some of his teachers and other adults in the building (never mind that he knows them so well because he leaves class and wanders around the building chatting with them). He is developing some peer relationships - also a first. Everyone knows who he is because he is 7"2"! Kids are still stopping me to ask, "Are you that tall boy's mom?" I am very proud to say, "Yes, yes, I am!"

It breaks my heart to see that he doesn't want to leave East, but I understand. Talking to him about there being many future spaces where he will have friends hasn't made him kick in and do his work. His teachers have bent over backwards to offer him multiple ways to be successful. He just doesn't do the work. He is completely capable of doing it, he just doesn't.

He has definitely had behavioral issues. Our safety plan is that before he gets too agitated, he goes home; this has worked so that no horrible violent explosions have happened at school (at least from my perspective). He has thrown things, broken an exit sign, torn things off walls, and even spit on/toward people but this is nothing like what he's done before. He still does the thing where he sneaks up behind someone and scares them. He has also been a little "stalky" with two teachers he really liked. One asked for him to be removed from her room.

The main issue I've struggled with is that people don't believe me when I say Marcus can't help doing these things. They think I make it up, that I spoil him, and that I let him get away with everything. Even my husband is there right now. Staff have told him that Marcus never gets any consequences (they think he needs punishments like suspensions) because people are "afraid of your wife." This pisses me off to no end. It means they have not listened to me at all and they are not seeing my son, only a perceived power I am supposed to possess given my role as UR person in the EPO (see my other blog to find out what this is).

I finally hit the roof on this issue when Marcus ended up in the locked psych ward last week because he wanted to kill himself. Making it up am I?! He spun out around another episode where he threw something at a peer he's been struggling with for a while. He doesn't want to do these things, he knows it's wrong, he can't stop himself, he feels like it will never get better ... "I'd rather die."  I sent a few rounds of terse emails and, once again, attached the literature on Tourette's. I even highlighted in yellow the sections describing what researchers call "rages." The text describes Marcus to the letter. People responded warmly to my stress; we'll have to see whether they got the point.

Again and again I have to fight for him. Why don't people believe mothers? I can't say often enough that I am not making this stuff up. Do they think I don't get how hard it is to work with Marcus? I live with him for God's sake!!! I get mad at him all the time, believe me. He steals and eats all my food all the time, will take money from my wallet if I forget to lock it up, makes ungodly noises ALL THE TIME. I get it. But being mad, taking stuff away, or any other traditional punishment does not stop him from doing any of this. It is not willful defiance. It's neurological.

I just wish I knew how to help him stop doing what he doesn't want to do. If I had that answer ...

Ending on a positive, here he is at his senior Prom :) What a handsome young man!

New school year adjustments

We are three weeks into Marcus's year at the new East. The first week was the honeymoon where things went well. These last two weeks have been more difficult. He's not the only student adjusting to everything being different, but of course, he's my child. Teachers and staff are trying to figure him out. The school responded well to my letter (see previous post) by making sure teachers had all the Tourette's literature I sent. The support model continues to need tweaking, but is generally working well.

One of the new administrators with whom I am developing a nice relationship shared this article on her Facebook page. While Marcus doesn't have autism, the things the mother expressed are very much what we deal with. People who don't have children like Marcus or my friend's daughter simply do not understand what we deal with everyday. Like the women who wrote the article, I have been at the park when Marcus dashed off to push a child over. I have had to pull over on the highway because of a violent tantrum. I have had those looks from other parents when Marcus has exploded in public. My husband and I stopped taking him out and we isolate in our house, even now. Bringing people to our house is scary. People don't know.

As these new teachers come to learn all of Marcus's behaviors, they barely get a glimpse into what it's like to parent him. I feel a little embarrassed to be honest. I wonder whether they have compassion for me or whether they think it's my fault. I want to say "welcome to my world" but then I have shut off that world to "outsiders"; it's a conundrum.

We are all meeting next week - 10 teachers plus admin folks - to talk about what has been happening and brainstorm next steps. I have mixed feelings. On one hand, I greatly appreciate how much everyone is there with full hearts to help Marcus be successful. On the other hand, here we go again. Another group of people who will peer into our family and see how difficult it is. I'm not one for all this intimate exposure. I suppose that is silly given I am writing this blog where I reveal all this stuff for anyone. There's the rub. Gotta be all in for your child.

First day of school

Here is an email I just wrote to Marcus's school. They are transitioning to a full inclusion model, which I totally support, but have a ton of questions about for my child. I was up all night worrying...

I am writing as a mom today. As the first day of school approaches, I am up at night wondering about my son’s transition to general ed. As you know, I fully believe in inclusion, but am really struggling to understand the support model. I’ve listened carefully to explanations, but still don’t fully understand what it means for Marcus specifically. I have a ton of questions that I’ll just list in sort of a stream of consciousness way, so please bear with me.

What does support actually mean? I know there will be “more support”, even more than before. But I don’t know what “support" means. I have a sense of what it means for academic support, but what about behavioral? How will each of his 10 teachers learn about Tourette Syndrome and all its complexities? Will they know that Marcus has to pace, needs frequent breaks? Will they all read his IEP? People with Tourette’s have what the literature calls “rages” and Marcus does have these. We do everything possible to avoid them. How will teachers learn this? If he crosses that line, people get hurt and property gets damaged, which has led to him getting arrested. Our clear goals (there are only two right now), and why my husband stopped working so he can be in the school while we transition from residential placement, are no arrests and a high school diploma. How are we going to reach those goals in a support model? 

Last year, we had regular meetings with his teachers where we taught about Tourette’s. The vocal and motor tics, movement, disinhibition, impulsivity, rages, touching, etc. Marcus has severe Tourette’s which means he has all of these things, including the corollary diagnoses of ADHD and OCD. People unfamiliar with Tourette’s always think he is doing these on purpose, then punish him. Punishment doesn’t work. Teachers showed his classmates a video I gave (the school psychologist has it now) to peers so they knew about his involuntary noises and movements. The film, “I have Tourette’s but Tourette’s doesn’t have me”, shows kids talking to kids about Tourette’s. Marcus was actually in it. It’s an HBO production. Pacing can be an issue for teachers, but Marcus MUST pace; it’s a release of tension where he can also tic. The code of conduct rules would make this a problem. How will the support model assure us that Marcus will not be punished for pacing and that teachers will know this? We also work very hard to avoid rages and their triggers. This means that Marcus sometimes just goes home if he is overwhelmed. It was part of his safety plan, yet it was still counted as an unexcused absence. We had to try several times to get these unexcused absences removed because leaving is part of his safety plan. How will we make sure this continues to happen? What about if he touches someone (a tic), or makes weird noises (also a tic). See the attached NYSED document for a list of tics (table 1, p. 4), all of which Marcus has done at some point. I couldn’t see how these behaviors will be accounted for in the new code of conduct. 

I’ve attached literature I always give to teachers and support people so they can know about Tourette’s, including the official NYSED training manual. Please note the stressors on page 6 - most of which are happening in the next few months. I have a book called “Teaching the Tiger” that I believe was ordered for the building last year. If we can’t find it, I’m happy to lend my copy again. Kathy Giordano, the person who wrote most of this work for TSA, is in Rochester at the Advocacy Center. She has come to our schools before to teach people. The Tourette Syndrome Association is a huge resource and it has a lot of resources for teachers. Here is their website: http://www.tsa-usa.org 

Sorry to be a worry-wart, but you can’t know how terrifying it is for me to see Marcus in handcuffs. As a mother of a young black man in today’s lethal environment, I can’t express how dealings with police frighten me. 

I’m happy to meet to talk if that is a better way to help me understand how this will all work.

Thanks,

Joanne

Never expected this

As you know, Marcus started at East High School about 2 months ago. It is his first experience in a general education setting since kindergarten. I was full of fear about what might happen based on the past 12 years in self-contained settings. I know the research on inclusion shows conclusively that students with disabilities thrive in general education settings, but I wasn't sure about Marcus since our local district simply doesn't follow the law and gets away with it. Plus, when he ended up in a closet with an aide at the end of kindergarten, I was determined he would not be hurt like that again. We had two goals: no jail and a high school diploma.

I did not imagine that things would be as amazingly welcoming as they have been. He has, for the first time, been able to develop friendships, feel welcome and valued, and even have girls flirt with him! We have lots of support in place, for sure. My husband stopped working so he could spend full time supporting Marcus. He is in the building all day and is available in case anything happens. He has an amazing one-to-one aide who is skilled as a teaching assistant. We started with only a few periods, then built up to a full day as he adjusted. Going from home instruction to a full, comprehensive urban high school with 1800 students was quite a jump. But it went so much better than I worried about that I can't even describe how good it feels.

The very best part, something I never imagined was possible, was him joining the unified basketball team. Marcus is now 7 feet tall and growing. He has never played basketball before. But, unified sports is amazingly inclusive and a wonderful way to learn a sport. The coach taught him as he played in real games against other teams in our county. Just being 7 feet tall made a difference, but Marcus learned really quickly. He understood where he was supposed to be on the court, ran up and down the court with his team, and helped players up if they fell. The first time he made a basket, I thought my husband and I would pass out from excitement. It was the most fun we had had since Marcus was a baby before his diagnosis. I still don't have words for how wonderful this has been. Seeing Marcus experience team sports (the team gathering for chants, supporting each other on the court, high fives...) was something I never knew could be so wonderful. The varsity coach came to his first game to see how he did. He definitely has his eye on Marcus for his team.

I write this today so that other parents who have children like Marcus can see that there is hope. Even writing about having hope scares me a bit (I have to admit I am still waiting for the other shoe to drop), but hope is creeping in. I fear I had lost hope. Seeing some glimmer is transformative and soul-healing. Never give up!

Here's a picture of his first game. I couldn't be more proud.

Best. Day. Ever.

Today was the best day ever. Okay...maybe for the past fifteen years since Marcus's diagnosis. After six months of home instruction, he started at East High school; his first experience in general education since kindergarten. This is the end of his first three weeks. In spite of a few ripples, he has thrived. The little things were important: opening his locker on the first try, having kids run up to him to fawn over how tall he is (he's now 7 feet), girls flirting, and basketball coaches drooling. After waiting for a few days to get his now size 18 shoes delivered from online, he had his first practice yesterday. 

That leads us to today. East played Edison at Edison. He road the bus with the team wearing his cool new East uniform. When he came onto the court, I couldn't breath. They did some warm ups and got ready to play. Marcus went in after about 5 minutes. I immediately took out my camera and took pictures, quickly posting them to Facebook, Twitter, and put a short video on Vine. There he was playing on a team after only one practice.  He knew where to be on the court, watched the ball, and learned the clock. He blocked a shot. When he took his own first shot, I thought my heart would stop. No score, but that didn't stop him from trying another time. He helped two guys up who were knocked down. He did the team "go East" chant after a time out, and slapped hands with the opposing team at the end. And we won!

I never dreamed I would ever tell a story like this about Marcus. Things have been hard for so long that I think I stopped dreaming. Morris and I sat in the stands hooting and hollering at every play. We were so happy. Again, not something we have been in a long time. I have never been prouder. Marcus reminded me that I love basketball. 

This was the best day ever and we've got to savor the good ones. I shall savor this one a long time.