Tag Archives: special education

He Belongs

Posted on by findingmykid
4

Martin asked, “Why is this school year going so much faster than last year?”

I answered, “It can seem like time goes faster when you’re having fun. Do you think you’re having more fun at school this year?”

He said, “This year is way better than last year. The kids are so much nicer, because everyone knows me better now.”

I don’t consider myself a superstitious person. Yet I hesitate to post good news on Finding My Kid. I ask myself, What if tomorrow things go bad again? If I say today that Martin is doing well, do my readers assume that will always be true? Isn’t it easier to admit when we’re going through a tough time, and thus to set a lower bar that subsequently I can exceed? Am I going to jinx his whole recovery?

Martin has a handful of friends now—friends he made himself instead of in social-skills group or otherwise organized by me. Despite April’s unsuccessful play date, I think the friend situation continues to improve. What follows is a series of texts from last week with Martin’s school behaviorist, Debbie. If you are a regular reader of this blog, you may recall that I affectionately refer to the behaviorist as Debbie Downer, because she never seems to hesitate in giving bad news, which makes these texts all the more precious:

He’s totally part of the class now. Today was another [happy] tear-filled day. I just watched him interacting with his peers and them calling his name across the room to share in a private joke or ask each other questions.

I wish this year wouldn’t end for him.

We have so many kids that we can choose from now to request to be in his class next year.

You know, you probably could invite the whole class to his birthday party if it’s not too late. If you’re concerned about a lot of rejections you wouldn’t even have to tell him that you invited everyone. You would just be happy with whoever showed up.

You guys should be very proud of your little boy.

When I pick Martin up after school now, we cross the parking lot to the sound of “’Bye, Martin! ’Bye!” The other kids are talking to him.

Last week Adrian and I attended Martin’s IEP meeting, where this progress was confirmed. The speech teacher recommended switching from a mix of one-on-one and small-group instruction to small-group only, on the grounds that Martin progresses better when he has other kids to talk to, instead of being just with a grown-up. The resource teacher said the same thing she said at our last check-in: that Martin does not need resource room. The classroom teacher echoed what Debbie had said. We all decided that Martin no longer requires a one-on-one aide. Next year, he will share the aide with another student. The idea is to pair Martin with a special-education student who needs more academic support and less social support. Martin, who apparently no longer needs much academic support, won’t have someone looking over his shoulder in the classroom but will retain the benefit of the aide in the wild west that is gym class, lunch, and playground.

Friday before last, Martin was invited to a classmate’s birthday party. (The mom had invited every boy in the class, but still, Martin was invited!) The party was at an indoor track-and-field center, and chaos reigned. (The mom had also invited every boy in the twin brother’s class, plus friends from outside school.) Martin was hardly leading the pack; sports aren’t his forte. Still, he did fine and did not freak out or melt down—even when a boy who bullied him last year but has since switched schools showed up unexpectedly. Martin kept his distance from that boy and just did his thing. At one point, I saw Martin and the birthday boy from his class walking with their arms around each other’s shoulders.

Sorry about all the italics. How can I help it?

I left Martin’s IEP meeting feeling like a million bucks. Last school year was so difficult, and I constantly questioned whether we had made a bad decision when we pulled Martin from his self-contained special-education school and placed him in our local public elementary. Here was a team of professionals agreeing that Martin, finally, is bridging the gap and becoming more like a regular kid.

The same day as the IEP meeting, I attended an allergy-awareness presentation at the school. On the way out I ran into a church acquaintance, a mom I barely know but whose kids attend both school and Kids’ Klub with Martin. She looked confused and asked me what I was doing there. I said I’d also been at the allergy-awareness presentation. She still looked confused, so I asked, “Did you know Martin goes to school here?” She replied, “No. I had no idea,” and then added, “Martin goes to this school?”

As a special-needs parent, I have a tendency to perceive slights against Martin. I could have interpreted this mom’s question as geographic, i.e., surprise because she didn’t realize we live near each other; our district has several elementary schools. But of course I didn’t interpret her question as geographic. I assumed that what she’s seen of Martin at church has convinced her that he doesn’t belong in mainstream school with her kids.

I said, “Yes, Martin goes to this school. Did you think he isn’t good enough? Why would you suggest that to me? I have news—your kids are hardly brilliant.”

Just kidding.

I said, “Yes, Martin is in Mrs. B—’s class.”

And I thought, “That’s just where he belongs.”

Third Day, Positively Sleepy?

Posted on by findingmykid
1

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.

I’m a Wreck

Posted on by findingmykid
5

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.

Three Drugs, Maximum Dose

Posted on by findingmykid
4

I play in a softball league for local women. We have four teams, comprising mostly moms in their 30s and 40s. It’s fun.

At one practice, a few of us were discussing Martin’s move from a private self-contained, special-education setting into our local school. (I’m so anxious. I raise the topic with anyone who knows anything.) I said that my son—no one on the team knows Martin—has ADHD and language delays.

Someone asked whether we’d considered the district’s own self-contained, special-education classroom for Martin. I said that we’d observed that classroom and liked the teacher but (1) we didn’t see any advantage to moving from one self-contained setting to another, and (2) our district representative wasn’t sure Martin would fit well with the students in the self-contained classroom. I worded the second point carefully, so as not to suggest that the class was behind schedule, or that Martin was “better” than its students, in case any mom present had a child in that classroom.

And indeed, one mom did have a child in the district’s self-contained classroom. She started talking about her son. She said that they’d considered trying to switch him to general education with an aide (that’s what we’re doing for Martin) but felt that the move from a 12-student-or-fewer classroom to a 20-student-or-more classroom would be too much for him to handle.

We have the same concern for Martin, I told her. I’m wondering how this year is going to go.

“I’m sure it will be fine,” she replied. “It wouldn’t work for my son. My son’s ADD is so bad.”

I’ve seen this woman’s son. He comes to watch our practices and games. To me, he looks absolutely typical.

I said, “Academically, attention is our main concern, too. Martin has so much trouble paying attention.”

“Not like my son,” she said. “Seriously, once my son even had an autism diagnosis. Now he’s on absolutely the highest dose of every medication he takes.” She named three pharmaceuticals, none of which I recognized. “For every one, he’s got the highest dose they allow. Based on his body weight, they won’t even let him take more. That’s how much he needs, just to pay attention.”

As she spoke, I grew uncomfortable. First, the way she said “autism diagnosis” conveyed, “You can’t even believe how bad his condition is.” I abhor “autism” being used as a synonym for “territory you don’t want to be anywhere near.” Last year I helped a special-education acquaintance request a neurodevelopmental psychiatric evaluation for her son. When I asked later how it went, she (despite knowing Martin’s then-diagnosis) replied that she hadn’t completed the exam because, after only the first session, the doctor said her son didn’t have autism. “That’s really what I needed to know,” that mother told me. “I mean, thank God, at least he doesn’t have autism.”

Second, as I’ve written before, I can’t say that we will never allow Martin to use a pharmaceutical to address his poor attention span. For example, if we get to middle school and a pharmaceutical can make the difference between fully mainstream and still being pulled from the classroom, maybe we will try the pharmaceutical. (Maybe.) That being said, the thought of an eight-year-old child, like softball mom’s son, taking a variety of drugs to alter his brain chemistry turns my stomach—especially because the family doesn’t seem to be making any attempt to address overall health. Every time I see the boy, he has goldfish crackers or an ice-cream cone or an artificially flavored popsicle or even a soda pop in his hands.

Third, softball mom’s comments were tinged with—I don’t know—pride, or bragging. She sounded like we were trying to outdo each other: My son has so little attention span that he needs three drugs, maximum dose. Can you top that? I suspect that, if we ever compared our children, I could top even three drugs, maximum dose. But who on earth would want to play such a game?

Sitting quietly and typing my blog, I can expound the three reasons her comments disquieted me, and come up with the kind of helpful response I could have given, something like, “I’d really like to hear more about your experience with the self-contained classroom. Can I give you my number so maybe we could grab coffee?” or maybe even, “We’re always looking for new friends. Do you think your son would like to do a play date sometime?”

On the softball field, however, I panicked, confounded as usual, nothing productive to offer. I said only, “Wow, it sounds like you’ve really got your hands full!” and hoped she would change the subject.

For ahen these situations arise, I’ve got to find some middle path that is neither my opening monologue to the biomed revolution nor a throw-away comment to move the conversation along. Regardung my veganism, I’m able to thread the needle; I respond honestly but non-graphically to any questions (no one wants to hear about factory farming at the dinner table) without pushing an agenda. What is the biomed equivalent? How do I gently suggest that a non-pharmaceutical option is available, without affronting or appearing judgmental?

Suggestions welcome.

He Doesn’t Seem to Know

Posted on by findingmykid
16

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.

The Bigger Perspective

Posted on by findingmykid
2

Martin’s school is a self-contained special-education setting for children with speech and language disorders, including autism. The teachers possess patience and experience in equal measure, the administration is supportive, and I feel fortunate that has been placed there since kindergarten.

Yesterday, when I arrived to pick Martin up for personal training, I ran into the mother of Brian, another boy in Martin’s class. I’ll call the mother Chrissy. This is the third year Brian and Martin have been in the same class, so I know Chrissy well enough. Chrissy was picking up Brian, and as usual, she had her younger son, Aaron, with her. Aaron attends a special-needs preschool in the City, and I know that the family has been looking for a kindergarten spot for him, so I asked how the process is going.

“Good,” Chrissy replied. “I think we are actually going to be able to get a spot for him here.”

“Here? That’s terrific,” I said. “Both boys in the same school—they’ll be able to see each other, act like brothers. You must be happy!”

“Yeah. I’m happy.”

Chrissy didn’t sound happy.

“Not a great thing?” I asked, tentatively.

“I mean—both my kids are going to be here.”

Ah, yes. Of course. Both her kids will be in the superior self-contained special-education setting for children with speech and language disorders, including autism.

Because both her kids have autism.

Because we are losing a generation of boys, and a lot of girls, no one is doing anything about the crisis.

Disappointment

Posted on by findingmykid
5

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.

Last

Posted on by findingmykid
1

Martin attends our church’s Tuesday after-school program for kindergarten-through-fifth graders. Because the program is volunteer-run, and because I want Martin to participate as fully as possible, I send an aide with him. The aide, Janine, is a special-education professional whose assignment is to ensure that Martin is included, to help Martin with any projects or activities that might otherwise overwhelm him, and to back off whenever Martin is able to handle the situation unassisted. I would accompany Martin myself, except that my presence is nothing but a distraction. When Mommy is in the room, I’m afraid, Martin has eyes for nothing else. Besides, who wants to play with the kid whose mother is hovering behind?

I can’t say that Martin loves going to the Tuesday program. He tries to get out of it whenever possible. (“I’m so tired!” “I don’t feel well!” “Oh, I just want to do my homework.”) Compare that with Sunday mornings, when Martin eagerly accompanies me to church and participates in children’s Sunday school. I don’t know what accounts for the contrasting attitudes. It could be that Tuesday afternoons he is exhausted from school and wants time alone, or that the Sunday school teacher (Sundays he has no aide) lets him get away with only minimal participation. It could be that he doesn’t like having an aide, although he’s never asked to attend Tuesday alone, only to skip the event altogether.

I wrote that verbose introduction to establish that although I am not present at the Tuesday after-school program, I know a lot (through Janine) about what happens there. (Perhaps I got distracted from that point.) Often Janine’s report is super: Martin was asked to light the candles and did so without help; Martin sang along in choir practice; Martin played tag properly in gym; Martin raised his hand and answered questions after storytime. Some weeks Janine’s report is tougher to swallow, such as the two occasions on which no one wanted to hold Martin’s hand during the prayer circle. (He was in the grip of allergies and probably using his hand as a tissue.)

This Tuesday, Janine said that the gym teacher, who usually has the kids count off or otherwise randomly divides them for sports and games, decided to appoint two team captains and let them pick teams. Remember those days from grade-school gym class? Two kids stand up front, pointing to the best athletes first. The chosen teammates join their captains, relieved. I remember well. I was usually the first girl chosen, and I liked that. I also understood why the teachers stopped the process when half or two-thirds of the kids had been picked, and just split the left-overs between the teams. This Tuesday, at the church, the gym teacher didn’t do that. He let the picking go on and on, right down to the very last kid, on and on until only one kid was un-picked, until there was only one kid standing alone, unwanted by either team.

I’m sure you know who that kid was. Take any group of typically developing grade schoolers, mix in one kid with autism, and see who gets picked last.

Martin did not show any overt reaction, Janine reports, but it is always hard to tell what he’s internalizing.

I hate when things like this happen. I hate the insensitivity of an adult who would let that happen. (Next Tuesday I will show up at the church a few minutes before the program begins and explain to the gym teacher, in kind and polite words, the effect of his decision on my son.) I hate wondering how much Martin’s self-esteem suffers from his difference, and the irony that our efforts have improved his awareness enough to know that he’s being left out, but not enough to know how to fit in. I hate wondering whether Martin will ever be fully included.

I also hate dealing with these questions at this time, because Adrian and I are facing a difficult decision. Since kindergarten (he’s in second grade now), Martin has attended a wonderful self-contained special-education school. His class has twelve students, each with autism or some other type of disorder that affects the ability to communicate. The pupils are bright, and they soldier on under the “common core” standards now stamped onto our public schools as widely as vaccination requirements. Adrian and I have realized, however, that Martin is perhaps not being challenged academically; his homework packet takes him no more than ten minutes to complete, and about eight of those minutes are dedicated to arguing with me over whether he can illustrate the homework because he’s bored. Adrian and I have wanted to believe that, even if Martin isn’t challenged academically, at least he has social role models; half the kids in his class have language challenges but no particular social impairments. On the other hand, over the past year, Martin has made enough progress, socially, that he is nearing the level of those social-top-tier classmates. So now what? What is the next level that Martin can reach, if he remains in his self-contained special-education school?

For that reason, we are considering attempting to find a private school, with small general-education classes, that would be willing to let Martin come to school with an aide, at least for the first year or two. Martin might not be ready, yet, to make the jump to general education. Moreover, it would be a one-way street; if we pull Martin from his current school, we will likely lose his placement there, and have no option to re-enroll him. On the other hand, we know that elementary curriculum (public school, or private) becomes advances rapidly in third grade, requiring more drawing conclusions and making inferences. If there is a “best” time to more Martin out of special education, we may be approaching it.

Then I remember what I hate. Even if Martin isn’t challenged in his current environment, at least he’s safe. At least he’s neither bullied nor left standing, alone, when the teams are picked. At least his self-esteem—maybe his most fragile attribute—is padded and protected.

To leap, or to stay safe? Even on that everyday question, autism leaves its mark.

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Whatever Gets You Through the Night

Posted on by findingmykid
1

I have coined a new syndrome: My Kid Is in Special Education But It’s Not the Same Way Your Kid Is in Special Education and Mine Isn’t Staying in Special Education So Why Bother Being Friends Syndrome, or MKISEBINSWYKISEAMISSESWBBF Syndrome. I know that’s a cumbersome, but I really think it could catch on.

I encountered MKISEBINSWYKISEAMISSESWBBF Syndrome four years ago, on Martin’s first day in a preschool for children with special needs. Half a dozen parents and caregivers were in the waiting area before school ended. Some seemed to know each other already. I saw a woman alone, as I was alone, so I introduced myself and said it was my son’s first day at the school.

The woman checked me out sideways, without facing me. She wore gigantic diamond-stud earrings, and honestly, her hair looked much better than mine. She was picking up her daughter, she said. Also first day here.

Did they live near the school? I asked. Was it a long trip like we had, coming from another borough?

The woman didn’t answer that question. Instead, maybe thinking that I wanted to follow up personally, instead of just make small-talk, she said that her daughter had spent the previous year in regular private preschool, and that really everything had been fine there and her daughter had no trouble socially or academically, and had many friends, and was now going to this school temporarily to help with some mild dyspraxia, and as she and her husband expected their daughter to return, by next year at the latest, to her regular private school, they were planning to keep her friends and social peers in that school, not this one.

Oh. Okay.

Yesterday, at Martin’s last day of gymnastics, MKISEBINSWYKISEAMISSESWBBF Syndrome struck again. Martin is one of the few kids who doesn’t participate in the JCC’s afterschool-busing program, because that program is offered only to the school district immediately surrounding the facility. He’s jealous of the kids who come directly from elementary school to the JCC by bus, with no mommies or daddies. This week he asked to bring his backpack to gymnastics class and put it with the other kids’ backpacks, I guess so he would look more like them.

“What district do you live in?” the assistant instructor asked when I explained why Martin had his backpack. We had arrived five minutes early, so we had time to chat. I told her our school district and that, right now, Martin has an out-of-district placement and attends a private school in another town. In another year or two, he might transition back to the district school, either to a self-contained special-education classroom or to a mainstream classroom with an aide.

“We’re in that district, too,” the assistant instructor replied. “Actually, my son, Andrew, is just changing schools. He went to first grade at D elementary school, but for next year they’ve just placed him into the self-contained second-grade class at G elementary school.”

This was quite a coincidence. Our district had been trying to convince us to place Martin next year into the self-contained second-grade class at G school—Adrian and I disagreed with the recommendation, thinking it is too early to pull Martin from his very successful current placement—but the district officials had abruptly stopped pushing us a couple weeks earlier, when the last spot in the G school class had been taken. Now I realized that the student who had filled that last spot was this assistant instructor’s son, Andrew.

I like the assistant instructor a lot, and she seems to have a good connection with Martin, knowing when to give him those bits of extra help that make possible his participation in a non-adapted class. I said, “Martin has friends in the self-contained class the year below him and the year ahead of him, and his mainstream friends attend S school and M school. I would love for him to know another student in the self-contained class for his year, so that he’ll have a friend if he moves into that class in third or fourth grade. Do you think Andrew would like to do a play date sometime?”

“Sure,” the assistant instructor said. “I mean, I guess. Actually, Andrew’s trouble is really just remembering what he’s been taught. Just an academic issue. He’s probably not going to be in the self-contained class for more than a year.”

Memory problems. Remembering what he’s been taught. Not like your kid. Not all that autism stuff.

I didn’t bother to get her number for a possible play date, and she didn’t ask for mine.

This post must sound like I’m judgmental toward those moms who suffer from MKISEBINSWYKISEAMISSESWBBF Syndrome. I’m not. Looking at the big picture, isn’t my approach to Martin’s autism a lot like MKISEBINSWYKISEAMISSESWBBF Syndrome? Even if I don’t say it to other parents, I’m constantly thinking, sure, Martin has autism now, but he won’t have it forever. Soon he’ll look more typical. Soon we won’t be in this spot.

And even if I couldn’t relate MKISEBINSWYKISEAMISSESWBBF Syndrome to my own actions, still I wouldn’t judge. As I recently wrote on a friend’s Facebook page, isn’t survival just the art of balancing what’s healthy against whatever gets you through the night? If another mom needs to think her kid isn’t the same kind of special-ed student as my kid, I’m willing to let that be her reality. Whatever gets her through this night.

More Civility

Posted on by findingmykid
1

Last year I took Martin to a friend’s sixth-birthday party. I talked to the birthday boy’s mom in advance and knew they were serving pizza. For Martin I brought homemade GFCFSF pizza and cookies.

I thought Martin would be happy with those choices. With the pizza, he was. I heated it in the hostess’s oven and served it on a party plate, just like the other kids’ pizza. Unfortunately, the situation went south when cake time rolled around. Martin didn’t want just any treat. He wanted the cake. And when he didn’t get cake, he went into meltdown mode.

I might give in to something like a non-organic apple. But I don’t concede gluten-, dairy-, and sugar-laden cake. I picked up my screaming kid and moved to another room, where I held Martin on my lap and tried to calm him with promises of a special cupcake when we got home. (I would gladly have stopped at blessed Babycakes, which sells cupcakes that are free from gluten, dairy, corn, soy, and refined sugar.)

Martin was having none of my peacemaking. He cried and wheezed, inconsolable. At this point, another mother, whom I never had met, entered the room and asked, “What’s the problem?”

“My son is upset because it isn’t a cake he can eat,” I replied.

The stranger came closer and said, directly into my ear, “Just tell him you’re taking his piece home for him to eat there. By the time you get home, he’ll forget about it.”

I had a child on my lap near hyperventilation. This was not the time to explain that I don’t follow lie-now-and-hope-he-forgets approach to parenting. So I replied, “I wish I could, but he remembers everything.”

This woman was not to be deterred, neither by my blow-off attempt nor by Martin’s tears. “What is he, gluten-free?” she asked. “Why don’t you give him some of the ice cream?”

Her voice was loud so I could hear her over the racket, and her tone was sharp so I would know that she didn’t approve of a gluten-free diet.

“It’s harder than that,” I said, trying to sound sheepish so she would leave and let me return my attention to Martin. “He doesn’t eat gluten or dairy or refined sugar.”

I didn’t bother adding soy, corn, starches, most carbohydrates and fruits, non-organic or processed foods, or preservatives to the list of what Martin doesn’t eat. No matter. Apparently gluten, dairy, and refined sugar were enough to earn this stranger’s condemnation. She said, “Oh my God.” Then she rolled her eyes, turned her back to me, and walked away.

So I got what I wanted: She left us alone, letting me return to comforting Martin.

The rudeness I could have done without. Also, the particular phrase she chose, which is offensive to me.

Most of the children attending the birthday party had special needs. Later, after Martin calmed down, I saw this woman with her son. He wore ankle braces and hearing aids, and he engaged in atypical behaviors. Our conversation had been special-needs-parent-to-special-needs-parent, but it sure didn’t feel that way.

What went wrong at the birthday party? First, it was a terrible time to discuss anything. Martin was in full meltdown mode. The stranger could have said, “You have the most intriguing eyes I’ve ever seen, and I would kill for a figure like yours,” and still I probably would have tried to blow her off. Second, she was plainly unwilling to think outside her own box. Really, I don’t even think she wanted to help. She wanted to judge.

Let’s compare to a conversation in which I found myself a few weeks later. This one happened after a meeting of our district’s special-education PTA, when parents were hanging around to mingle. I ended up talking with a woman who introduced herself as the mother of an 11-year-old with Asperger’s. When she asked about Martin, I said that he has made enough progress that I’m not sure whether to say “autism,” “high-functioning autism,” “Asperger’s,” or something else. She asked about what therapies have helped the most. I replied that we do biomedical and homeopathic interventions, and that those, combined with a restricted diet, seem to have made the difference.

We talked some about Martin’s diet. Then the mother said, “I think a lot of so-called autism remedies are snake oil, people trading on hope and desperation.”

I replied that she has a point. Even after years on the biomedical path, I find it hard to distinguish between legitimate interventions and unsupported promises. I try not to let it get me down. I hire and rely on experienced doctors, and I do as much research as I can manage.

The mother asked, “Do you do the dangerous stuff, like chelation?”

I replied that we haven’t chelated yet but plan to; that from what I know, chelation is safe if done properly; and that, in terms of which interventions have relieved autistic symptoms, chelation rates highest in parental reports.

She said, “I hear what you’re saying. But people who say you can treat autism are the same people who say vaccines cause autism. Do you believe that?”

I replied that I think the strict cause-effect narrative has undermined legitimate debate about vaccines. Everyone knows that vaccines are dangerous for a child with a compromised immune system—that’s why parents are told not to bring a child for shots when she has, for example, a cold or an infection, and why a child undergoing chemotherapy cannot be vaccinated. Autism, I said, is the symptoms of an underlying immune disorder, often with a genetic component. The immune disorder may exist before the symptoms manifest. If a child is asymptomatic, his parents and doctors may not recognize the immuno-problems, and they may therefore go ahead and vaccinate. The vaccine, in turn, causes the already compromised immune system to go haywire, and then the symptoms manifest. In such a scenario, the vaccine didn’t “cause” the autism, but it did exacerbate the pre-existing immune disorder and cause the symptoms (i.e., the autism) to appear.

The Asperger’s mother listened to my entire monologue. When I finished, she boosted my ego a little by saying, “You know, you’re the first person who’s ever told me about a link between autism and vaccines without sounding insane.”

We talked for 20 or 30 minutes, this mother and I. Don’t worry! It wasn’t all me rambling on. She knew tons about navigating the special-education system, and I grilled her for tips. We ended up exchanging numbers and thanking each other for the shared insight.

Did I convince this mother to begin biomed with her 11-year-old? Probably not. Did we have a positive interaction? Definitely. Unlike at the birthday party, the special-education PTA event was the right time to discuss helping our children, and the mother I met was curious and open-minded.

Civility is out there.

Even if it doesn’t always seem that way.