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.

Huge decision

After a lot of thought, we have decided to home school Marcus. This past year in residential has been very difficult. He was arrested four times in Spring semester alone. It became clear staff didn't like him. I'm not saying Marcus was innocent, he did terrible things. But jail was an inappropriate response. I will follow up with more detail later; I just wanted to give a quick update since it's been such a long time since I posted. Now you see why. 

Frustrations

Settling back into school and the cottage after the California trip has been touchy for Marcus. He's had a few incidents at school, including one where he threw a piece of plexiglass that cut a staff member. The good news is that they didn't call police and the man was not badly hurt, but the bad news is that wasn't the only incident.

After the great time on the trip, I am really frustrated with Marcus. He can clearly manage his behavior when he wants to, even when the stress is high. So to have so many incidents once we got back is difficult. There was even one incident where he broke a peer's glasses and kicked another peer an hour and a half after the re-entry meeting from a previous incident!! I'm at a loss.

The only thing he could identify as a possible source of his anxiety is the possibility of discharge and return to Halpern - both things he wants. Halpern has still not agreed to take him back mind you. They did agree to come to observe him and to talk to Hillside staff about how they have been working with him. That's good news, but does cause stress. Still, he doesn't seem to get that he can't jeopardize other people's safety no matter what stress he's under.

I'm concerned that he's not ready to transition back to Halpern. If a simple observation causes this much stress and acting out, how much would the actual change generate? I definitely feel pressure from Hillside about discharge though. I know they are under pressure from OMH, so it's not personal, but will be something I'll have to deal with. Part of me wants Marcus just to stay at Trahey (Hillside) for the rest of high school. They work well with him (reading to younger kids, for example), have a great school manager, and his one-to-one is awesome. If change would cause such havoc (and potential real damage), why push it? I am not interested in OMH's interest in saving money. My concern is the well-being of my son.

Going well

Just a quick update to let you know that Marcus is doing really well on the trip to California. The plane flight was uneventful. There was boredom for sure, but no worrisome behavior. Time with family has been great. He's still too loud and can get antsy and paces, but all has gone really well. He's been charming with my mother, helping her get around. He's like a different kid. So far so good. We have another two days and then we're back on the plane home. Keep your fingers crossed that the rest of the trip goes as well as it has so far.

Merry Christmas to all.

Three months in

Well, we are three months into the six months Marcus has been on the ACD. Mostly, he has avoided violence. He's had the few incidents I have already written about but no police. I'm hoping that this hard work with get noticed by Halpern, his home high school. So far, they are reticent to take him back. Maybe reticent is too light a word - they are not willing to take him back at this point. Although, I haven't heard lately whether his mostly positive behavior has changed their minds. I plan on contacting them myself after the holiday break to begin a conversation about his return.

Another piece of good news is that his usual one-to-one aide is back working with him. I'm so glad. She really cares about Marcus and knows his sweet side. Marcus says she's more distant than before though. I told him that's understandable given how he has treated her. Hopefully, he will earn back her trust.

... Just a brief update.