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. 

More changes

I'm cautiously hopeful about some upcoming changes for Marcus and our family. As you can read in another blog of mine, my university will be running a local high school and I am working on placing Marcus there. I know it will be an amazing place and Marcus deserves amazing.

We went on a tour this past week so Marcus could get a sense of the place. We picked a day when there would be few students present due to Regents testing. The principal arranged for the district's director of special education to join us so he could help us get what we need to support this huge transition. One thing that happened really struck me. I'm not sure whether it's sad or moving or what I felt, but here's what happened.

The principal opened a typical classroom door so we could see what they look like. Marcus walked in, paused and said, "Oh, so this is what a classroom looks like."  I gasped and all the adults looked at each other. The last time he was in a general ed classroom was in kindergarten and all he remembers about that year was being in a closet with a para. While on one hand it's a sad statement, it also gives me some hope about the possibilities of re-integration.

I also realized I might be the person the most worried. How will Marcus handle so many kids? We are planning on starting him in smaller classrooms but there will still be the hallway and the cafeteria. A key support will be having my husband as the official 1:1 aide. The director of special ed agreed it would be good and is going to help us get that set up. I realize having the "dad" there has its own challenges, but keeping Marcus from exploding overrides those for me. We have two goals: keeping Marcus out of jail and getting him a high school diploma. I can't see meeting the first goal if Morris isn't there, at least at the beginning.

What were we thinking?!

It took me this long to give you updates on our home schooling decision. Sorry, but a lot has been going on. See my Life, Literacy, and Laughter blog to know what I have been doing at work.

Marcus moved home at the beginning of September. We had the CSE meeting that established his placement as "home instruction". We were assured that he could be on home instruction and get his diploma. We have two goals: keep Marcus out of jail and high school graduation with a Regents diploma. I know he may not go to college, but I want him to have choice. The NYS "local" diploma doesn't give the choice of college as an option because it isn't a diploma - only a certificate of completion. Our plan was that my husband Morris would do the additional three and a half hours a day of instruction (in addition to the two hours he would get from the district) to meet NYS requirements. We enlisted the help of a friend who is a certified teacher to help Morris since he is not a trained teacher. All was going well for a bit.

But, the honeymoon ended and we started seeing more aggressive behaviors from Marcus. And, the district started saying that he couldn't graduate from home instruction because it is a temporary thing. The good part is that Marcus has totally engaged with his tutor and has learned more content in these few months than he has in years. He got Bs on his last report card!

Unfortunately, the teaching proved too much for Morris. I didn't realize how embedded in the teacher mindset I am as a teacher educator and underestimated what he needed to do to figure it out. I pummeled him with materials thinking he would do what a teacher does - look at it all, find themes, develop projects and lessons, etc. Well, I learned that not everyone thinks that way. I even tried giving him an EngageNY module. I hate the modules because they are scripted, but that they are scripted might be useful to him. Not so much. He let me know that it wasn't going to work out. I was disappointed for sure, but understood.

We have a CSE meeting January 8th to figure out a new plan. My proposal will be to have Marcus go to East High School (now that my university will be running it) for a modified day and have Morris be the official one-to-one aide. I have gotten approval from the principal and the EPO Superintendent (see by other blog for explanation of this) of this plan. Now I just have to get CSE approval. No way I will let them set Marcus up for jail again!

It has been very difficult to have Marcus home full time and to have Morris only working a few hours a week at NEAD. Remember they both have Tourette Syndrome. Their relationship is getting better, close even, but there are flare ups when Marcus does his thing. We've had two violent episodes with some property destruction and some stealing of money and food. Marcus has a food obsession I don't understand. He has never been food deprived, but he obsesses about eating and will eat everything in one day. We now have a locked cabinet for food.

Between Hillside and the school district, there has been a steady stream of people in our house, something that is difficult for us since we tend to hole up and isolate. We have the tutor every morning, a family therapist weekly, a skill builder weekly, a social worker weekly, a parent volunteer weekly, and a services coordinator. And Marcus sees a therapist, also weekly. All of this is incredibly helpful, but it's quite a lot of coordination. Morris is handling this for which I am very grateful.

That's it for now. I'll let you know what happens at the CSE meeting this week.