After Second Week, Open House

After two weeks of school, we attended open house and visited Martin’s classroom.

Various parents knew each other already and formed their little collectives, to chit-chat about teachers and classroom behavior plans and extracurricular activities. Adrian was late (work), and I knew only one other mom, who herself was late, so effectively I knew no one. I nudged into a few groups, alternately smiled and looked concerned, then sat at Martin’s desk.

He shares a desk with a boy named Lucas, I discovered. I introduced myself to Lucas’s mother, a lovely Central American immigrant. Lucas, the told me, understands Spanish but prefers English (like Martin, these days) and talks about Martin. I suggested getting Lucas and Martin together for a play date. She agreed but warned me that Lucas has had speech and language delays, is socially immature, and has been held back a year in school. I assured her that Lucas’s immaturity would be no problem at all.

The teacher made a presentation about expectations and how she runs the classroom. (In the middle her talk, Adrian managed to show up). Then she invited the parents to explore the classroom. Adrian and I took advantage of the time to bombard the teacher with our questions. How is Martin adjusting? Is he finding other kids with whom he can eat lunch? Can he keep up?

The teacher told us that Martin had needed to do a lot of adjusting, in terms of independence. The first day he had expected someone else to unpack his backpack, and to accompany him to the bathroom, and to make sure his lunch ended up with the other lunches. He had stepped up and learned quickly. (I’ve been realizing that Martin’s old school coddled him too much.) Academically, the teacher said, Martin is “solid.” (I should hope so. He’s repeating second grade.) He is a pleasure to have in the classroom.

Are you sure? we asked. He’s not disruptive or giving you any trouble? He’s able to follow the instruction?

“He’s fine,” the teacher said.

Fine? What does that mean? Is there anything we can be doing to help? Because sometimes “fine” means everything is okay, and sometimes it means there’s trouble. If there’s any trouble, we’ll step in and—

At this point, the teacher’s expression migrated from solicitous to amused. “‘Fine’ means he’s doing fine. Really.” Then she added, “I think you two need to chill out.”

Yes, Martin’s second-grade teacher told me and Adrian that we need to chill out.

At which point we decided to back off and chill out. We wrote a note to leave in Martin’s desk. We mingled with parents. The other mom I knew had arrived by then, and she introduced me to a couple who are seeking a new psychiatrist for their daughter’s neurodevelopmental work-up. I recommended Dr. PS.

As we walked to the parking lot, I said to Adrian, “I think the only way that could have gone better would have been if she told us Martin had been elected class president.”

Martin atop the Empire State Building. Sky’s the limit.

Third Day, Positively Sleepy?

From my perspective, School Day No. 3, which was a Wednesday, commenced as inauspiciously as School Day No. 2. Martin woke himself early by coughing, then had to be dragged from bed to the breakfast table. (Not literally. Everyone be chill.) He barely ate, except what I loaded onto a spoon and lifted to his mouth. (Literally.) He was scratching his legs—bug bites, remnants of Costa Rica—so intently that I made him wear pants, though the forecast was steamy. We trudged to the bus stop where, again, he isolated himself.

If they don’t kick him out of general education based on whatever he does today, I will be satisfied with that, I told myself. It was the best I could conjure, in terms of reassurance.

Beginning at 1:08 pm, I had this text exchange with Darlene, the behaviorist:

[Darlene:He is exhausted but compliant and doing his work. Looking a little warm too. Shorts tomorrow for sure.

[Me:On it. I put the pants on him today only because he was scratching the bug bites on his legs! No behavior issues?

Nope.

He has brand-new [school name] shorts and is eager to wear them.

He started laughing at one point this a.m. and was told to stop. He didn’t. Was told to stop or he would move to yellow and he stopped immediately.

The afternoons he is tired so [Mrs. N] asked resource room teacher to pull him in morning during morning work. (This is a maintenance and review period when many ESL students get pulled.) They’re going to try to accommodate that.

He’s definitely doing a lot of writing in school. I know they already wrote up a science experiment and an “about my summer” paragraph. And today he finished a poem about himself.

Overall it sounds good, except for the laughing. On the other hand, if he stopped for yellow that’s an improvement. His old school couldn’t address that behavior well.

He’s doing great.

Thanks, Darlene.

So they did not kick him out of general education based on his Day No. 3.

I told myself to be satisfied with that.

Second Day, Not So Great. Or?

Martin’s school year started Friday before Labor Day. With the long weekend, the kids had three days off between the first and second days of school. Weird, right?

Labor Day weekend, Martin’s cousin Mandy was staying with us, because her school didn’t pick up until the following Wednesday. Martin and Mandy had an exhausting visit. Friday afternoon they attended a birthday party at one of those “inflatable party zones”—basically, a warehouse filled with bouncy houses. Friday, Saturday, and Sunday nights Martin and Mandy built blanket forts in our family room and insisted on sleeping in them (which meant not sleeping much). Saturday afternoon and Sunday afternoon we had guests. Although it was cool and rainy, Mandy dragged Martin into our swimming pool. Repeatedly. Monday my father and I took the kids to an indoor fun park with trampolines and climbing equipment, and then Adrian took everyone out to lunch. In trying to accommodate both kids, I let Martin have more sweets than usual: juices, fruits, homemade cake and ice cream.

More or less, it was the last great party of the summer.

When Tuesday rolled around, we received the bill for all that fun. I could barely rouse Martin, he was crabby at breakfast, and he refused even to say hi to the other kids at the bus stop. He ended up isolating himself: sitting alone on a rock, running back and forth, checking out. (Mandy, meanwhile, stood next to me and chatted amicably with the other moms.)

When the bus came, Martin clung to me and said, “Mommy! Mommy!” but then boarded without additional delay.

I escorted my father and niece to Port Authority to catch their bus, and then I returned to my home office, because I hadn’t worked all weekend and had to play catch-up. I was glad to have work to keep me occupied; I couldn’t shake the feeling that Martin would have a tough day, being as tired as he was and also thrown into such a new situation.

I arrived at the bus stop early and waited ten minutes before any other parents showed up. When the bus came, Martin disembarked with the other kids and hugged me. He seemed okay. We walked the five minutes home, where I eagerly pulled his binder to check for any notes from his aide.

I found a note. It said: “Martin had a good day.”

I’m a Wreck

Get used to this: I’m going to post about Martin’s newest adventure, general education. I’m going to post and post and post and post about Martin in general education.

At age two, Martin received center-based Early Intervention services in a six-child, seven-adult setting, that is, one-on-one.

Ages three and four, Martin attended pre-school in a self-contained special-education setting, where he was deemed too unfocused for a 12-child, two-adult classroom. He was placed instead in an eight-child, five-adult classroom, i.e., eight kids, one teacher, two assistant teachers, and two aides.

Martin attended kindergarten, first, and second grade in a self-contained special-education setting, in a classroom with 10-to-12 children and four adults, i.e., two teachers and two assistant teachers.

Two weeks ago Martin started second grade (again; he’s repeating) in our local public school, mainstream classroom, with an aide. That means 21 kids and two adults, i.e., a teacher and a teacher’s assistant, who is designated to assist Martin as needed.

This is a remarkable leap for Martin. For the first time, he will attend school with typically developing peers, and he will have to manage with far less classroom support. He will walk with me to the bus stop—in a 2016 suburb, I’ve learned, an eight-year-old does not navigate two blocks to the bus stop alone—and ride a regular school bus: no more short-bus pick-up and delivery directly to our door. He will eat lunch in a big cafeteria. He will be cast out upon the playground without any planned “social awareness activity.”

He may learn that not every child in his class is his friend.

He may get hurt.

The first morning unfurled with great fanfare. Martin chose to wear a t-shirt bearing his new school’s name. Adrian stayed home from work. He and my mother-in-law (still visiting) and I accompanied Martin to the bus stop, where we found five other families, some we knew and some we didn’t. All the other moms and dads had come to the bus stop, along with an uncle and a couple nannies, so we made quite a crowd. Martin greeted the twins from across the street but otherwise kept to himself. When a parent suggested a first-day photo, all the kids lined up and smiled, and Martin lined up and smiled with them. He even posed and managed to smile toward the cameras. When the bus came, he hugged me and Adrian and his grandmother good-bye—this was appropriate; all the kids were giving hugs—and boarded the bus without hesitation. The assembled adults remained, waving as the bus headed schoolwards. Adrian and I stood in the crowd, waving.

My mother-in-law and I had tickets to the U.S. Open that day. We went, only for a couple hours. I was a wreck, checking my phone constantly. I don’t know what I expected. Maybe a message that Martin was having a meltdown? Maybe a call from the school administrators to inform me, in hushed and apologetic tones, that they’d made a mistake, and Martin wasn’t the right fit for general education?

Our district offers us the services of a behaviorist, Darlene, who has worked with Martin weekly (or so) for more than two years. God bless Darlene. Knowing I would be nervous, she decided to visit Martin’s school that first day and observe him. Early afternoon, she sent me these text messages:

Doing great. When I walked in kids were sitting on carpet. It took me a few minutes to find him. He blended right in. Aide was sitting on the other side of the cluster from him. Teacher said he needs a lot of structure but responds well to it. Said she noticed that he thinks his thoughts out loud but we can work on that. He is participating in discussions and is doing well.

Recess he tends to like the swing. I spoke to Mrs. I [the aide assigned to Martin] and we gave him some small tasks. (Find someone from class, go say hi, go down slide, etc.) Then he could come back and swing. Will explain more later what I’m thinking of how to structure re essential while teaching social skills. Heading to another school! All good though!!

I responded, “Thank you!! This is awesome!”

My mother-in-law and I were home from the U.S. Open in time to join Adrian at the bus stop, along with my father and my niece, who arrived that afternoon for a visit. Martin alit the bus all smiles. With prompting, he told us about his new classroom and teacher and friends.

Day One was in the books.

I was optimistic. Still, as I told my friend Stacey, if this general-education placement doesn’t work out, that won’t mean we’ve failed. It will mean only that we moved too fast.

He Doesn’t Seem to Know

Back to the topic of school.

We’ve been hoping to transfer Martin from his self-contained special-education school to a general-education classroom with an aide. Our local zoned school, at Martin’s grade level, had 26-to-28 kids per class, which is too many, so we looked at private schools. We found two church schools we thought would be good fits. Each school asked Martin to visit, for an entire day, without an aide. Each visit, Martin was at his worst; fighting his Lyme disease has been a rough ride. Combine “Martin is having a bad day” with “Martin is making a full-day visit to a general-ed classroom with no assistance.” The result was no private school placement for Martin.

At the same time, Adrian and I became increasingly convinced that the time has come for Martin to leave his current placement. Martin has started copying undesirable behaviors that he witnesses at school, like whining. Four other boys are leaving the class, including Martin’s two closest social peers. Martin has started self-advocating, telling us that he’d also like to go to a new school. He says he has too many teachers and that he’d like to be in a bigger class, and that he wishes he could go to a school close to home like his friends from play group do. Finally, Martin is finishing second grade, so these decisions concern possible third-grade placement. We’ve been told, by multiple sources, that the distance between second-grade curriculum and third-grade curriculum is the biggest jump in elementary school. Academics (except for reading comprehension and drawing inferences) are Martin’s strong point. Adrian and I worry that the longer we leave Martin in a slower-paced, modified learning environment, the less possible an eventual move to general education will become.

Just when it seemed that leaving Martin in his current school would be our only acceptable, available choice, two late entries arose. First, our district passed a new budget, part of which added additional sections to our zoned school. The class sizes dropped from 26-to-28 kids to 21 or 22 kids. Second, our local Catholic elementary school, which works closely with our district, invited Martin to visit—for a few hours, with an aide—and he happened to be doing well that day. Then the district offered Martin an IEP for general education, with a full-time, one-on-one teaching assistant, plus a consultant special-education teacher, plus resource room, plus regular visits from a behaviorist to the classroom, plus continued speech therapy and, if we wanted more services, occupational therapy, physical therapy, and counseling (services he has in his current placement). This panoply of benefits would be available to us at either our zoned school or the Catholic school.

The decision to pull Martin from his current placement was almost clear. Almost. We still faced this hesitation: Whatever our concerns with academics or behaviors, Martin is safe where he is now. His class is small, structured, and constantly supervised. He faces no playground bullying. He does not stand out because of his differences. His self-esteem is high, his confidence intact. The headmaster of one of the church schools that turned us down earlier this year is a former special-education administrator. Immediately after Martin’s full-day visit there, the headmaster kindly spent 20 minutes on the phone with me and Adrian. He enumerated the reasons why they wouldn’t accept Martin (including, apparently, the 11 times Martin stopped between the gymnasium and the classroom, because he wanted to examine a vase, to look at a photo of last year’s graduates, and so forth). The headmaster also said, in Martin’s favor, “I have to tell you that he made himself right at home. This is quite extraordinary—Martin doesn’t seem to perceive that he has any challenges at all.”

I’d like to keep it that way: that Martin doesn’t perceive that he has challenges. With continued hard work and a little luck, we just might be able to lose the ADHD diagnosis before Martin wonders too much about being different. If we toss him into a classroom of typically developing kids, how much of Martin’s own perception of himself will evolve?

Well, we’re about to find out. Last week, Adrian and I accepted the district’s proposed IEP, placing Martin into general education with an aide, in our zoned school, with one change in plans: At our request, Martin will repeat second grade. He’s changing schools, so the other kids won’t realize that he’s repeating. I hope that repeating second grade will give Martin a chance to adjust to the faster pace of general education before he is called upon to master new material.

Martin’s going to spread his wings. Here’s hoping he can fly.

IMG_3295

Martin, in orange, with friends.

Disappointment

I’d like to write a bit on the topic of disappointment, because disappointment is affecting me this week.

To be honest, disappointment is always affecting me, to some degree. When we started recovering Martin, more than five years ago(!), I thought we’d be done by kindergarten. The mother who launched our biomed journey put that notion into my head, I suppose, because she’d recovered her own son in less than three years. Martin is in second grade now, and if you read this blog, you know that he’s not recovered yet. That disappointments me, chronically.

The fact that the pace of Martin’s recovery disappointments me—that compounds the issue, because I feel disappointed in myself. Think about the son I have today: conversant, joking, getting-healthy, almost-non-stimming, diagnosed ADHD/language delay. Compare him with the constantly stimming, perseveration-stuck, limited-speech son I used to have, diagnosed ASD. What kind of person am I, to let disappointment enter my thoughts?

dis•ap•point

v.tr.

1. To fail to satisfy the hope, desire, or expectation of.

2. To frustrate or thwart.

v. intr.

                To cause disappointment.

We are hoping to transfer Martin from his self-contained special-education school to a general-education classroom with an aide. The neurodevelopmental psychiatrist (mainstream) says that Martin is ready. The behaviorist says that Martin could make the leap. Martin’s Sunday-school teacher, who has charge of him along with a dozen typically developing kids one morning per week (and who herself has a son fully recovered from autism), has advocated for general education. Adrian and I, when we see Martin at his best, know that he has outgrown his special-education placement and needs the challenge of general education.

Our zoned elementary school, at Martin’s grade level, has 26-to-28 pupils per class. Even with an aide, that’s too many. Instead, we’ve been combing the local private schools, which average 12-to-15 pupils per class. I’ve met with the admissions directors of more than half a dozen private schools, explaining that we want to transition our son, and that he would likely need assistance, including a classroom aide, for another year or two. One school told me to get lost: They had no provisions to help a child transition to general education, and were not interested in stretching their parameters. Several schools said they had a resource room and/or a special-education teacher on staff and could offer accommodations but would not consider a classroom aide. Two schools, both church-affiliated, said that if Martin was otherwise a good fit, they would consider allowing a classroom aide. One of those two schools currently has two students with classroom aides, and its headmaster is a former special-education teacher. That school soon became my, and Adrian’s, top choice for Martin. When the school agreed to have Martin visit for a day, last week, we were hopeful.

As I wrote above, when we see Martin at his best, Adrian and I know that he has outgrown his special-education placement and needs the challenge of general education. Regrettably, Martin is not always at his best, and for the past month or so, he’s been sensory-seeking, with a diminished attention span. (A limited attention span—an infinitesimal attention span—remains Martin’s greatest challenge. Diminish that? Argh. Martin? Martin? Hello, Martin?) When he visited our top-choice private school last week, Martin was not at his best.

The school promptly turned us down.

What a disappointment.

Disappointment, because although the other church-affiliated school remains in play, our plan to move Martin to general education may be delayed another year. Disappointment, because the school we thought would want our son rejected him. Disappointment, because biomedical recovery is still a fringe movement, so I cannot tell the school, “Two steps forward and one step back. It gets worse before it gets better. The antimicrobials he’s taking for Lyme disease have kicked up a lot. Wait a month or two. He will be a whole different kid.”

The sting of rejection is still fresh, and today Martin’s annual review arrived from his current school. If you have a child with an IEP, you know that annual reviews, and progress reports, and IEP’s themselves, are not drafted to highlight a child’s strengths. They are drafted to justify maintaining services. Martin’s annual review is no exception. He has trouble sitting in his chair properly. He sometimes calls out inappropriately during lessons. (Detoxing. Ever hear of detoxing?) He reacts poorly when he doesn’t earn all his behavior-management tokens. He can’t focus. He needs prompting. He is making progress, but he isn’t ready to leave his supportive setting.

When I was a child, my family had a Magnavox Odyssey2 video game console. (Showing my age with that admission.) I remember a game that scrambled words. I just searched online but found no record of this game. (If you, dear reader, happen to be an Odyssey2 whiz, or just skilled at finding ancient relics online, please email me at FindingMyKid@yahoo.com, or comment on this post, with some evidence that this word game existed.) I loved the Odyssey2 word game. I challenged myself to find words too long to fit on the screen.

I remember distinctly: The longest word my pre-teen mind could conjure was DISAPPOINTMENTS.

Fifteen letters, DISAPPOINTMENTS. Many months passed before I found a better word than DISAPPOINTMENTS.

Today, here, now, I challenge myself to find a better word than “disappointment.”

I challenge myself to find a better emotion than disappointment.

IMG_2084

Martin, next to a good friend of mine, checks out the Long Island Sound.