We had a great first quarter. Movie Boy made honor roll! Three A’s, and three B’s. He also got a perfect score on his first quarter city-wide math exam. I credit a lot of this success to the fact that we removed him from PE. Without worrying about that environment, he can relax and concentrate on his studies. In the meantime, we keep him physically active and in positive social situations by involving him in football and swim team.

But, yesterday, at 3:30, I got a call from the Assistant Principal. She told me that he had been involved in an incident in the cafeteria, where he “discharged” his inhaler at two girls. I asked what prompted it — she did not know. She said an investigation would be conducted. I told her that Movie Boy does not initiate conflict. There is more to the story than just he did this in a vacuum. She didn’t know. She didn’t know much. She told me she was going to have Movie Boy write a statement, to which I replied “No, you won’t. He is not to write or sign anything without me present.” She said she would send the form home.

I called his case manager. By now, it was around 4 p.m. He was not aware of the situation. Really? I mean, this is his CASE MANAGER. The case manager’s explanation? “The APs are my bosses, I don’t tell them what to do. If they don’t want to include me in the loop, then they don’t.

Nice.

I talked to Movie Boy. And then the pieces started falling together. I sent this note to his AP in lieu of filling out the form she sent home:

Dear Ms. AP,

This is in response to the request for an Incident Report. I am submitting this e-mail in lieu of the form, as a parent’s statement. I have instructed Movie Boy is not to sign any paperwork.

I spoke with Movie Boy this evening. Movie Boy explained that he was in line in the cafeteria, behind a girl named A—- and her friend (he does not know the friend’s name). He says A—- turned and noticed that he was behind her, and threw up her hands and yelled very loudly, “Oh come on!!”, meaning that she was irritated that Movie Boy was in line next to her. She made it clear to him that she did not like him being behind her.

Movie Boy has endured bullying from A—- in the past. He responded by saying, “We are only going to be in line together for a few minutes, Can you just put up with that?” After that, Movie Boy says he is not clear about what she said, because her voice got screechy and mean. At that point, she pushed him in the stomach. The two girls were laughing at him. Movie Boy did not leave the line, because he was afraid to lose his place in line. He got his food and went to his seat, away from her, and with his friends. The girls went to their seats.

Then he was approached by Miss G, who asked to talk to him. She took his inhaler. He returned to his lunch.

There have been a series of problems with A—-. Last year, in 6th grade, A—- smacked Movie Boy in the face. Another time, in PE, she jumped on him and scratched him when he picked up her ping pong ball. I communicated my concerns about repeated bullying last year. Movie Boy also communicated his concerns about A—- to his teachers this year – he asked his 7th grade subject teachers not to seat him near A—-, because he knows she will bully him. He finds her behavior to be aggressive and unpredictable. He says she bullies him, and then runs to the teacher and tries to get him in trouble.

Movie Boy also explained to me that he is not at all sure how to handle female bullies. He did not realize until we spoke this evening that girls can also be bullies. He does not know what to do when a girl is this mean to him. He is worried that because he is bigger and a boy, people won’t believe him. He says A—- has made it clear to him that she hates him, through her continued actions and words.

In addition to Movie Boy enduring continued bullying from this student, I am also concerned that he was without his inhaler for several hours. He is in the aftermath of a bout of bronchitis, he is under doctor’s orders to use his inhaler throughout the day whenever he coughs. He is coughing a lot, so needs the inhaler on a continual basis. As you know from his IEP, he is not proficient at asking for help or requesting visits to the nurse. In fact, we documented last year that he was resistant to visiting the clinic as he found it to be an intimidating environment. In light of this, and because he suffered a blow to his stomach, I find it concerning that he was never referred to the clinic for treatment, and that I was not contacted for several hours after the incident. Regardless of what else happened, I should have been notified immediately if he is injured or if he is separated from his inhaler.

As you know, Movie Boy has autism. Many children, including Movie Boy, have difficulty in loud and busy environments such as school cafeterias, and also with negative peer interactions. Both of these deficit areas are addressed in his IEP. In this particular situation, Movie Boy did not have access to his case manager, and his case manager was not informed of this situation.

Please contact me as soon as possible to discuss your strategy for protecting my child from continued aggression from this bully, proper management of his asthma care plan, and strategies to help him work on the relevant goals and objectives in his IEP to be successful in the cafeteria environment.

Thank you,

Kat

 

Movie Boy and I had our first IEP meeting of the year. Movie Boy attended because he had actually been the one who intitated the modification. He asked if it would be okay if he didn’t have to sit at the very front of the bus. I asked his Case Manager Dude and he said we would have to convene an IEP meeting. So, because he initiated this request, I wanted him to see what we do with a request such as this. We convened a format meeting, we teleconferenced his father in, we started our tape recorders, we talked, we decided to remove the restriction, and then we wrapped everything up with me taking the papers home to read through and sign later. I never sign at the table. Never. And then I explained to Movie Boy is might take a week or so for this modification take effect, because paperword has to be routed here and there and everywhere.

But I think it was probably empowering for him to see that he could be part of his own program.

We ran into a good friend this morning at Mass. Her face was red from crying. She explained that her father-in-law had died. I told her how sorry I was, and asked how her 12-year-old son was handling losing his grandfather. She said, “his faith is so much stronger than ours, and so he is handling it well. He knows his grandfather is in a better place.” I knew just what she means.

I lost my own father in 1995, and then my mother in 2002. Movie Boy never knew his grandfather (he was born two years after he died) but he had a remarkably strong relationship with my mother, his Grandma. Which was quite a tribute to her, as we lived 6000 miles away from her and most of their relationship was built on phone conversations. Which is quite a feat when you are dealing with any 5-year-old child, but an autistic, mostly non-verbal child? Remarkable. My mother would quite literally carry entire conversations as Movie Boy just listened on his end of the phone. No one else did this for him. They preferred the give and take of a usual phone conversation, they needed the feedback to feel like they were getting something out of the conversation. And, admittedly, it was hard to tell what he was getting out of the conversation because he did not provide any significant feedback. And so the few phone conversations he had with peopl would be short. But my mother had the patience of a saint with her only grandchild and forged a relationship with him on that phone line. She knew it was communication even though only one of them was talking.

About the time he turned 5, I approached our then-Parish Priest about Movie Boy’s sacraments. We are Catholic and most Catholic children start a two-year cycle of catechism in the first grade that culminates in receiving the Sacraments of Reconcilation and First Communion at the end of second grade. I wanted this for Movie Boy. The Parish Priest told me it would probably not be possible for Movie Boy to receive his sacraments, because as a child with autism he was “probably not capable of the intuitive thinkng required for understanding faith.”

I was incensed. I immediately switched parishes, where we found a much more welcoming community and inclusion.  We attended this parish while Movie Boy was in kindergarten, and then we moved to Virginia where he started catechism in first grade with his peers. I didn’t want my son in an environment that didn’t fully accept him, and we have been careful to choose where we worship.

But I worried. I worry about a lot of things with Movie Boy, and that priest’s words rang in my ears for months.

In the meantime, Ben Ten was born, and he was baptized at our new and welcoming parish, and my mother came to the ceremony. I have wonderful pictures of her with her two grandsons outside of that lovely church.

A month after she returned home, I received word that my mother was in the ICU. We flew home to be with her. After three long weeks in the ICU, my mother passed away. Movie Boy was in kindergarten. He spent these weeks knowing his grandmother was sick, stuck in the waiting room of the ICU with his 2-month-old brother and stepfather while I sat vigil with my mother. It was a sad time for everyone. I wasn’t sure if any child could understand the seriousness of what was going on. Movie Boy didn’t say much, but he really never did say much about any those days.

The night my mother passed away, after we all hugged and cried and discussed what-comes-next, my husband and my sons and I all got in the car for a long drive in the cold New Jersey night back to my mother’s home. We were all in stunned silence, even Ben Ten as a baby seemed to understand the weight of the moment and was quiet.

Light snow flurries began to land on the windshield. For a moment, I considered pointing them out to my Hawaii-born Movie Boy. But I just did not have the strength at that moment to break the silence. So I watched quietly as the flurries covered the windshield and then were wiped away.

And then Movie Boy spoke up.

“Grandma is in Heaven. She sent the snow to let us know.”

In that moment I knew that priest was so wrong. I also knew that my mother was in a better place. Movie Boy’s faith was so strong, he knew better than all of us what was going on, with or without the words to tell us.

I called it. We need to convene an IEP meeting to change accommodations for the bus. Case Manager Dude called me yesterday to set up the time. We talked about it and agreed that we would remove the verbiage from the IEP that restricts him to the front of the bus. We also talked about changing another accommodation. Because of all the trouble he had in transitioning from one class to the other last year (and by trouble I mean other kids bothering — which either meant they were mean or he was misinterpreting) — we added an “escort” to his transitions. Case Manager Dude would like to change the term “escort” to “shadow”, because they both imply different proximities. An escort needs to be at Movie Boy’s elbow, a shadow can tag along behind at a distance of about 20 feet. We want the latter, but have the former written into the IEP.

I am in agreement with both these changes, so hopefully the meeting will go quickly. I let Case Manager Dude know that while I agree with both changes, my standard operating procedure at all IEP meetings is:

1) Always tape record the meeting.

2) Never sign anything at the table.

I am glad we are meeting on such a mundane issue for this first meeting. I will get to feel out the other side of the table and see how they are and what their approach is.

I am also including Movie Boy in this meeting. He initiated the requests for these modifications by asking me to change them. That sort of communication is huge and I want to reinforce that, by showing him that in response to his request we (parents, teacher) are convening a meeting and making it happen. We might not always act positively on his requests, but at least we will take the time to sit and discuss the possibility. It is important for him to see that.

Also, I find that when Movie Boy is in the room with us, everyone minds their manners a little better. The stakes are higher, it would seem, if you lose your cool in front of a student.

The problem with IEPs can be that because they are paperwork in a big bureaucracy, they tend to move slowly into place. Several times over the years, Movie Boy’s accommodations have kicked in after he actually needed, and even when they were now inappropriate.

This week’s example is the bus accommodations. Movie Boy had a rough time on the bus last year. A bunch of mouthy 8th graders made his experience grueling. We had problems. When he offloaded, he was in a sea of 1200 kids funneling into the doors. So, we added accommodations so that he would be able to disembark earlier than the other kids (the band kids also get off early, since they are carrying bulky instrument cases that need to be dropped in the band room before homeroom.) We also asked that he have the front seat saved for him, so he could be close to the bus driver so she could keep an extra eye on him.

Well, this year things are different. His friends Matthew and Jamie Lee are now in 6th grade and ride the bus with him. The mouthy 8th graders, much to Karma’s delight, are now the young’uns on the high school bus. 

Overall, things have been good on the bus. He’s comfortable, he’s happy.

So, yesterday, out of the blue, one of the administrators from the front office met the bus and told the bus driver that Movie Boy MUST sit in the front seat. And MUST leave the bus early.

This, of course, was done in front of the other kids. Without much explanation. Leaving Movie Boy to feel like he was in trouble.

I wrote to his case manager and asked if we could ease up on these restrictions, as the accommodations are meant to be supportive of his success and not punative.

I spoke with the bus driver this morning, who is in agreement that things are good as they are and these accommodations at this time are not needed.

But, as you know, if the IEP says these are necessary then they will be implemented. I may actually have to have an IEP meeting to make this change.

Last night I attended a leader training session for scouting. There were three of us — the trainer, myself, and another new leader.

I was tired after a long day of work, and my stomach was bothering me, and I really just wanted to check this off my list of things to do and then go home.  But as always happens, at the end, the obligatory small talk ensued.

The other leader started talking about how she and her husband became the primary caretakers for his two children from his first marriage. And she mentioned that the son had sleep problems because his mother never kept the kid on a schedule. On principle, I cringe whenever the new wife puts down the old wife. Especially when the new wife has been doing the work for 6 months or so, and not the lifetime of the child.

I almost spoke up and said, “Hey, we use melatonin to help the kids sleep” but I was keeping quiet to wind the evening down. It was a good thing, since she then launched into a litany of all the things the mother had done wrong, including “doping” the son with ADHD medication and “those sleeping pills — Melatonin”!! They had to actually go through a “detox process” to get these medications of his system! He was a zombie when they got him!

I don’t know what ADHD medication the kid was on, but the kind Movie Boy takes (Vyvanse) is out of his system within 24 hours. It does not stay in his system, although I know there are some that do. ADHD medication helps many, many children and I’m really over the whole zombie hysteria.

As for Melatonin? This is a natural substance already found in your body. It is not a medication but a supplement. It does not require detoxification. For us, it was recommended by our Pediatrician and has had positive effects and no notable negative effects. For the record we get this highly controlled addictive substance at Trader Joe’s. In a chewable mint tablet. Very careful regulation on this concerning medication, don’t you think?

Now, she is entitled to her opinions, really. But I always wonder about people like this who will launch into their litanies when they are completely unaware of the people they are talking to. For instance, my kid is on ADHD medication and melatonin.

My neighbor has a similar tale. He “took custody” of his daughter after he found out that the ex-wife had gotten the daughter an IEP. He transferred her to our neighborhood high school where the first thing he proudly did was close out that IEP.

Seriously? In my experience, you don’t get an IEP just because you say “please”. You get one after a long and grueling assessment problem that not only identified an issue, but identifies it as being significant enough to meet the guidelines. It is not a gimme. To arbitrarily dismiss this just because you want you ex-wife to be “wrong” is just bad parenting.

Okay, and now I’m off my rant

The day-to-day logistics of Movie Boy’s day kick his ass.

So far this year (and it has only been a week) he has an A in two classes. Which is very hopeful. But he lost a check for $8 that was supposed to be turned into his Tech Ed teacher (later found after an e-mail from me to the case manager), and didn’t bring the payment in for school pictures (I had made an online payment and put the code in the appropriate place, but Movie Boy said, “But there was no money in the envelope so I didn’t turn it in.”)

This is after much coaching and post-its attached to everything in his binder. It is the beginning of the school year and transitions are hard for him, so I do expect that things will get a little better as he gets accustomed to his new environment. I hope.

The other issue is that there are no clocks in the 7th grade hallway. Or, rather, there are no working clocks. Due to some software malfunction, they are all off. And Movie Boy has no real inner clock. He marks his day by watching the clock. He has a lot of anxiety when he doesn’t know what time it is. Way too much gray area in not knowing where he is in his day.

All the A’s in the world will not help you if you can’t get through the mundane tasks of living. He asked me if I was mad at him about the pictures. Of course not, I told him. I didn’t tell him how much this worries me.

I have sent four short e-mails to his case manager this year so far. All related to this type of stuff. Asking him to support Movie Boy in being more successful in these tasks.

Movie Boy’s first assignment in English turned out to be an assignment for ME. The kids were told that a parent needed to write a “one million words or less” paper about their child. I do a lot of writing about Movie Boy on this blog, but usually about his autism. So this was something new and interesting. After getting over my trepidation about having a 7th grade English teacher read my paper and analzye my grammar, I sat down and wrote this…

My son Movie Boy was born in 1997 in Honolulu, Hawaii. We were living in Hawaii because Movie Boy’ father was stationed on a fast attack submarine in Pearl Harbor. For the first 6-1/2 years of his life, Movie Boy lived on the very small Island of Oahu. He wore shorts and flip-flops every day, even to school. In Hawaii, you wear flip-flops to school so you can kick them off easily before you go in the classroom. No one wears shoes in the classroom. They put them in a pile at the door. In Hawaii, Movie Boy didn’t own a coat, but he had many bathing suits and we spent a lot of time at the beach. At the beach, he watched the surfers, the boogie boarders, and the eel fisherman. He ate the local foods like mochi, teriyaki chicken and rice, spam musubi, manapua, malasadas, lumpia, and poi.

In Hawaii, when he was younger, he had blonde hair like me, but as he got older it gradually darkened. Now his hair is brown like his father’s. His eyes are blue just like mine. He is very tall, and is growing taller every day.

Around the time he turned 4, Movie Boy got a stepfather. His stepfather was a Marine, and so we moved to the Marine Corps Base in Kaneohe, Hawaii. Movie Boy liked living on base, and he liked the school he went to on base, where he went to kindergarten.

About this time, Movie Boy kept asking for a little brother. Every day, he asked me for a little brother. And then one day, I told him that we were going to have a baby, and that he would be a boy. Movie Boy was thrilled. He helped get ready for the baby.

It is one thing to have a brother, but it is another altogether to have a baby in the house. Babies are loud, and don’t smile much, and wake everyone up in the middle of the night. But Movie Boy took all of this in stride, because he knew when Ben Ten was older, he would be a good little brother. Except one time, when it was very early in the morning and Ben Ten was crying and crying like babies do. Movie Boy finally had enough. From his bed in his room, he yelled down the hallway, “THE KID IS MAKING ME NUTS!” His stepfather and I broke out laughing. The baby stopped crying. Everyone went back to sleep.

Eventually, we moved to the Marine Corps Base in Quantico, Virginia. Movie Boy went to 1st and 2nd grade in Quantico, and then we moved here. We plan to stay here for a long time.

These days, Ben Ten is 7 and Movie Boy is 12. They get along a lot better, and Movie Boy helps a lot with taking care of his little brother. And if you knew Ben Ten, you would understand what a big job that is! Movie Boy helps me catch Ben Ten and get him in the bath tub. When we are at the beach, he makes sure Ben Ten doesn’t go out too far. Movie Boy is a very strong swimmer and a good boogie-boarder, but Ben Ten is still small and needs help. One time, Ben Ten got knocked down and dragged by a wave and Movie Boy jumped in and saved him. He puts Ben Ten on his boogie board and helps him catch waves. Ben Ten is a typical younger brother. He wants to hang out in Movie Boy’ room all the time, play Movie Boy’ PlayStation 3, and hang out with Movie Boy’ friends. Movie Boy is a good big brother to him, but it isn’t easy. When Movie Boy complains about his younger brother, I say, “but you asked for him!”

I can always count on Movie Boy to help out around the house. He cuts the grass every week and does his own laundry. He takes care of his dog, Buddy. Buddy is a 2-year-old Golden Retriever/German Shepherd mix. Movie Boy keeps him fed and makes sure his water bowl is full. He also has to keep the yard cleaned up, which is not a fun part of having a dog but worth the effort. The only thing Movie Boy does not seem to know how to do is use a hamper. We have talked about hampers a lot, but he just can’t seem to master this skill. He gets close, but his dirty clothes just lay on the floor all around the hamper.

Movie Boy likes movies. He especially likes the Transformer movies. And he loves going to see movies in IMAX. He can tell you when most movies are going to open in the theaters. He also likes video games and computers. Movie Boy plays football. He is on the Panthers this year, and his first game in on Saturday. He plays nose tackle. He also is in Boy Scouts and is an Altar Server at church.

On special occasions I like to make Movie Boy’ favorite meal – shrimp scampi. He also loves anything minty, like mint Oreos, Thin Mints, or mint chocolate chip ice cream.

Movie Boy has also traveled quite a bit. He has been to a lot places, like Lake Tahoe, Nevada, Disney World in Florida, Guam, Okinawa, Los Angeles, San Francisco, New York City, Connecticut, and Pennsylvania. But his favorite place to go is Great Wolf Lodge.

Now you know a lot about my son Movie Boy. He is a great kid and a good son. He makes me proud every day.

I asked Movie Boy’s team to meet with us prior to the school year starting. So far, I’m impressed with his Case Manager, Mr. Flynn. Mr. Flynn has actually read his IEP and can converse intelligently on the subject matter in it. Always a good sign. He was impressed that Movie Boy had such good grades and was a conscientious student. The purpose of my meeting was not only to give the teachers a face to Movie Boy’s name, and a more realistic view of me from the caricature I’m sure they have heard about in the teacher work room, but also to talk about safety. I started the meeting by saying, “In 6th grade, I was asked on three occassions to pick Movie Boy up from school due to injuries sustatined at the hands of his peers that required immediate medical attention. I would appreciate your help in seeing that Movie Boy develops the skills he needs to be safe in this environment.”

All the teachers were very good about this request, and a productive discussion ensued.

I’m cautiously hopeful.

On another note, how many times a day must Movie Boy hear negative things about the team he is assigned to? Because I have very little presence at his school and already this week I have heard negative stuff TWICE. Once from a parent, who whined that her child had been assigned to the “ghetto” hallway. The other time was during the open house, when a student asked their parent, “isn’t this the stupid hallway?”.

Honestly.

Movie Boy has played football on the city league for the past three years. He started off barely understanding the game, and has improved his skills so that now he is playing first string defense.

He has a great team this year with great coaches. Honestly, if his teachers would employ some of the coaches teaching methods in the classroom, Movie Boy would probably do better in school. If they want a kid to “hear” them, they put their hands on his shoulders and talk to his face. If they want everyone in a crowd to get the message, they talk loudly, clearly, and in short, specific sentences. If they want to correct something, they have the kid repeat until they get it right, and then offer lots of positive enforcement.

Unfortunately, there is a weight limit in the city league, and so as a 98th percentile kid, he just barely made the weight this year. He is 5′4″ and weighed in at 145.0, which JUST made the 145 weight limit. Since he’s getting taller by the second, he’s going to size out of this league long before he ages out of it.

The other option for playing football is to play with the school team. We had heard this was fairly competitive, so we didn’t even try this option last year. We don’t see him leaving his current team to play for the middle school team, but we decided we’d give the tryout process a try. Not so that he could make the team, which we knew was a long shot, but because we want him to understand the process so that next year if this is his only option, he has an understanding of what it takes to make the team.

So on Monday, we went out to the middle school. Movie Boy and about 75 other boys were going for 35 places on the team. And while my boy is one of the biggest in the weight-restricted city league, he was a pretty average sized player in the sea of potential middle school players. One eighth grader there had to be 6′ tall, with size 14 shoes.

And a lot of them really, really wanted a place on that team.

Movie Boy held his own. In laps, he finished in the middle of the pack. He dutifully performed all the drills. He was neither an obvious cut nor an obvious stand out.

And there were a lot of stand outs.

So this morning, we called to see if he made the first cut. And he didn’t. And I have to admit that I was a little sad, because, I think, it is just natural for you to want your kids to succeed at whatever they do. And I have that little voice in my head that says he was never going to make the team no matter how well he did, because the PE staff know he has a disability. And that’s the tough thing with a kid like Movie Boy, not knowing if he’s been discriminated against or if he just didn’t make the cut. I watched the tryouts and I’m pretty sure that there were just 35 kids out there who were better than him, but the little voice is still there.

I think also, in an process such as this, he is competing not in an accommodated environment but on the same playing field (no pun intended) as his peers. I think it is a testament to his accommodations and education thus far that he did as well as he did. When he was 3, we went out for soccer and he spent the whole time alternating between wandering around the field and stimming on his water bottle. If you had asked me then if I thought he would ever play football, much less try out for a competitive team, I probably would have cried.

Deep down, I think I would have loved to see him make the first cut because it would have been tangible evidence that he could hold his own with his neurotypical peers. Which is not fair of me. Loading so much on a simple middle school sport tryout. I don’t know. And hanging in for the tryouts and doing his best — that is an accomplishment for any kid.  I am trying to think of this in terms of how I would feel if Ben Ten had been cut — Ben Ten being my neurotypical child — and not overload this event with too much scrambled baggage. Just take it for what it is — an experience in  a long string of experiences.

In the meantime, Movie Boy is just fine with being cut. His friend Paul, who also tried out, was also cut. He didn’t really want to go back without his friend. He is happy on his city league team. He knew we were doing tryouts for the experience and not for a spot on the team. He would rather go to the beach today than show up for another day of tryouts. And so that is what we are doing.