Still OK

This is what it's like to be the mom of a special-needs boy:

I park the car in the usual spot, which is about a block uphill from the school. This allows me to get out of the area easily after I walk him to The Stairs, rather than getting stuck in the carpool dropoff line. (My boy? Not so much into the dropoff line.) As I pull over, I notice a few kids--including a boy from N's class--walking down the hill from their homes.

"Do you mind if I just wait until M passes to open the car door, Mommy?" N asks.

And just like that. Heart in my throat. Why is he afraid to open the door as this boy passes? What is that little fucker doing to him? Is it physical? Or just name-calling?

We wait the 30 second until the boy and his friends are past, at which point N opens his door and hops out, all smiles. I'm less smiley.

"N," I say in a quiet, confidential voice as we begin to walk toward the school, a good 20 yards behind the child whose back is being stabbed by the arrows shooting from my eyes. "What does M do to you?"

He looks genuinely confused. "Do to me?"

"Why didn't you want to open the door when he was walking past? Is he threatening you? Making fun of you? Hurting you?"

"Uh, NO!" he said, with real vehemence. "I'm shy of him. I didn't want to have to say good morning, or walk in front of him or next to him. I like being behind better."

If he were a kid who understood sarcasm just a little better, he would instead have simply stuck his hand out and said, "HELLO? Have you MET me?"

Of course. This was about N, not M (who, isn't a little fucker, it turns out, and sorry about the arrows in your back, kiddo).

You'd think I would have known. You'd think.

So, in case you were wondering? School's going just fine. Everything is still OK. Once Mommy got her head out of her ass, that is.

The Club

I was spending the weekend with three of the world's most amazing women; Baroy was spending the weekend helping film a documentary that involves special needs kids. (More on both of those in more detail in the not-too-distant future.)

On Sunday, they were filming--among other people--N's occupational therapist (who is, if you ask me, a not-so-minor deity). Because Em has expressed interest in seeing how filmmaking works, and since I wasn't at home, he ended up taking both of them for a full day of filming.

By the end of the day, I'm told, N was done. D. O. N. E. He began to whine and suck his thumb and just generally get under everyone's feet...and skin. So, Em told me later, during the last interview of the day, pulled him onto her lap and held him tight, giving him the oh-so-calming sensory input that, really, almost all of us would do well with when things are just more overwhelming than we can handle. But, I digress.

They were, by this time, filming the family of a boy from Em's middle school who has autism; at one point, the boy was talking about going to a Galaxy soccer game, and how he felt about it. He said he felt nervous, and the interviewer asked him why. "I get nervous being around people I don't know," he admitted.

It was then, Em says, that from her lap came the barely audible sound of her brother's whisper. "Join the club," he said. "Join the club."

----
I recently pulled aside the aforementioned OT after a session in the clinic, to ask if it was unusual that N really never acknowledges his differences in any real way; doesn't seem to notice that not every child goes to RSP twice a day, has clinic and at-school OT sessions, gets pulled out for speech, gets pulled out for a little weekly psychotherapy.

"He's ten," I said, twisting my mouth a bit. "Shouldn't he recognize what's going on by now?"

"Well," she said. "by ten you might expect him to recognize his differences, maybe be concerned about them. Or, at least, you would if...you know...he didn't have a developmental delay." She emphasized the last two words, raising her eyebrows at me slightly, ever-so kindly, but meaningfully. "Which is, of course, why he's here in the first place."

I got it. I dropped it.

But now, I think, it may not be a delay. It may just be that recognition comes in many forms. It may just be that--despite the fact that he never cries about being "different," never asks about his quirks, never really talks about them as quirks--he sees himself clearly nonetheless. It may just be that he sees himself in others, that he gravitates toward 'his people,' and that he recognizes likenesses instead of differences.

It may just be that he sees himself as part of a club. Club Quirky. Club Spectrum. Club N.

He's Got Skills, All Right

There's ugly stuff going on at our tiny little synagogue. Political, maddening, saddening stuff. Where it will end, no one knows. I'm not sure there's a way back, but I'm not calling the game over quite yet. Where there's faith, there's hope. Or something like that.

But all that's too much for me right now. Too hard, and too long, and too complex, and not really all that much my story to tell. I'm pretty much peripheral to it, though it's been at the center of my thoughts for weeks now.

Which is why, instead, I want to tell you a light little shul story. One that focuses on our temple family, and not on its dysfunction. One that involved laughter to the point of tears, instead of just tears.

This weekend was the bat mitzvah of one of Em's closest friends, the daughter of one of my closest friends there. That meant that all of the key players in my part of our temple's little world were at services on Friday night. And as we are wont to do when we're all together, there was a lot of musical pews going on. Em was in the front row with her posse, all of them cheering on their friend as she led parts of the service. Baroy settled himself a few rows back. I flitted a bit--first next to Baroy, then to quickly whisper to the mother of the bat mitzvah, then to another friend who'd recently arrived. N has never sat in one place for more than 30 seconds during any service. Never. So he was doing his thing, too.

At one point, two of my mom-friends, C and F, were sitting near the back, and N plopped himself down between the two of them. C started idly rubbing his back. After a moment or two, N looked over at F and said, "This feels sooooo good. But you know what would feel better? Two hands!" And then just smiled brightly at F.

C was telling me this story later that evening, and I stopped her at this point. "So how long did it take F to start rubbing his back too?" I asked.

"Twelve milliseconds," she replied. And then started laughing, the kind of laughter that turns into painful gulps of air, tears streaming down your face.

"The thing is," she said, "at that moment, I just sort of flash forwarded about ten years..." And that was all she could get out, until she'd gained enough control to choke out, "I think it's possible that he doesn't really need those social skills therapies, you know? I think it's possible that he's going to be more than just fine."

Whose Child is This?

I was picking up N at his OT social-skills group yesterday, and he went--as he always does--to hug the various therapists who work with him there. And, as she's lately been doing, the lead OT reminded him to give "sideways hugs" rather than approach from the front and sort of bury his face into their bellies.

I've been meaning to ask about this, and since there were no other parents clamoring for attention at that very second, I brought it up.

"Hey, L," I said, "why sideways hugs?"

"Oh," she said, "we're trying to teach him a little bit more about appropriate touches...like putting your hand on someone's upper arm to get their attention, and stuff like that."

I grimaced a little. "You think he's getting to an age where it's not appropriate for him to be hugging grown women like that?"

"Oh, no," she said, looking surprised. "It's actually more about the kids. You know how he is...he keeps hugging his friends in the middle of group, or wrestling, and we're trying to work with him on that."

You know how he is? Yes, I do. Or I thought I did. The child I know has pretty much never initiated body contact with his peers. I'm fairly certain that he's never even touched another child in his class. But at group he's hugging? So often it needs to be addressed?

I stood there and grinned...and grinned...and grinned at L, who looked confused. When I explained why to her, she smiled. "He did tell the group today that he likes coming here after school, because this is where his friends are," she said.

Can a heart swell and break simultaneously?

* * * * * * *

My friend A often joking chides me about my laser-sharp focus on N's social deficits to the exclusion of everything else. "If he was found in a heroin den," she'll say, "your response would be, 'He was sharing needles? Appropriately? With his peers? Cool!'"

I can't really deny it. He's hugging and wresting his friends and disturbing the group? Cool.

* * * * * * *

There are times, many times, when--despite my all-encompassing quest to get N diagnosed on the autism spectrum--I still feel isolated from the autism community. I read books, descriptions, and they don't fit my kid, they don't fit my experience. I'll flip from feeling like I have no right to complain, because so many have so much more to deal with than I do, to feeling like N's getting the short end of the autism stick--all deficits, no gifts. (If you missed my self-pitying rants on this subject last week on Twitter, you are lucky. I'm embarrassed for myself.)

I've been trying to find books in which he might 'see' himself--books that might explain why he struggles, and that he's not alone. He seems like he's on the cusp of understanding, but yet, he's not quite there. (Sometimes, my life is nothing but a Parenthood episode.) But I can't find the book that speaks to me, which I fear means none of them will speak to him, either.

Sometimes I even wonder if this diagnosis is right. Sometimes I feel like we're out here all alone, like there's no one who can share our experience, because our experience is that unique. Like we're going to have to figure this out on our own, without the community that supports so many. Not because they won't support us, but because we have no right to ask for it. Because we're frauds, interlopers, pretenders.

(The ASD apple doesn't fall far from the tree, if you know what I mean.)

But then, despite my doubts, and despite his lack of intellectual understanding of his challenges and what they mean, N shows me the truth. He's made a friend at school--a girl from the special day class who is mainstreamed into N's classroom for a couple of subjects. He's starting to become close with another boy who is in RSP with him. And he embraces the group of kids he spends his Monday afternoons with at the occupational therapy center. In fact, as it turns our, he embraces them literally.

He's found his comfort zone, his people, his community. And, if watching N and his friend T say goodbye to each other while I talked with L yesterday was any example, they embrace him as well.

Cool.

The Other Mother

We were at Weeyum Wise's 9th birthday party.

It had been a difficult decision as to whether to go; it was being held at the Big Gym, which has always been a rough place for N; he loves it, he hates it, he wants to be there, he can't be there. And to make it worse, there wouldn't be a single other child, aside from Weeyum, whom N would know.

Weeyum's mom--my lovely friend J--suggested that, if N or I would prefer, we could do a special day with the boys another time, instead of putting him through this sort of potentially upsetting social scene. But N had seen the invitation, and he was dead set on going. So we went.

It was--if you use a neurotypical measuring stick--a complete disaster. N refused to take his socks off, refused to even enter the room where the other kids were playing. When they left the gym and went into the party room to have pizza and cake, N grabbed the chair right next to Weeyum, but soon abandoned it to come sit on my lap, insisting on having my hands over his ears while the rest of the kids sang happy birthday, refusing to eat any ice-cream cake, refusing to be in the group photos.

During the time the kids were in the gym, N wandered around the lobby, watching the others through the large windows, eventually talking to one of the mothers, one I didn't know, hadn't met. He was flirting with her, actually, as is his wont--chattering away, asking her to play with him. I had moved into the party room to help J set out plates and such, and also (no need to pretend otherwise) because I was embarrassed by N, by the way he was acting, by the way he was standing out. I was embarrassed because of what I assumed the other mothers were thinking about him. (I'm not even going to link here. If you've been around the special needs/autism blogosphere this past week you know why that was on my mind, why I was thinking about the other mothers' judgements of my son.)

And I was even more embarrassed by myself, by my embarrassment. (What kind of mother...I berated myself. Really, the only one behaving badly here was me.)

After I while, I noticed that this same mom was still interacting with N, handling him just fine, never once looking to me for help or intervention. At one point I saw J go over to N, trying to get him to join the group, and this mom just looked at her and smiled. "He's scared to take his socks off," she said. "He's fine here."

After the gym party was over, we moved to a nearby park to open presents. Again, N refused to join in with the other children, seeking the same mom out, asking if she would play ball with him. I was talking with another parent, watching; I saw her say a few words to her older son, a boy around N's age, then open a juice box for her younger, who was probably around five. Done, she let N spirit her away to play some game of his devising, with elaborate rules only he could possibly understand. But she never seemed rattled or upset, never sought my eyes, never seemed to want or need rescuing. So I stayed where I was, and turned my attention to the other kids.

And that's when I saw him. This other mother's older son, not too far off from the group of yelling, tumbling kids, but not part of it, either. Walking in circles around a tree; talking to himself; making spaceship sounds; gesturing with his fingers; entirely in his own world; absolutely happy.

I sidled up next to J, who was setting out some snacks. "That boy, M," I said gesturing to him with my chin. "He's one of N's people, right?"

J looked confused for a second, then realized what I meant. "Yes," she said. "Yes, he is. How did you know?"

I didn't answer, just watched him, watched J watch him, watched her see what I was seeing.

"I didn't see it until just now," I admitted. "At the gym, I couldn't have picked him out at all."

"That's his safe place," J said. "He goes to classes there all the time."

I turned to look at N and the other mom, still throwing the ball back and forth. "No wonder," I said, more to myself than to J. "No wonder she's handling him so well, so easily."

* * * * * * *

It's Autism Awareness Day today.

This last week has been one very long spate of awareness. In addition to the party, there was the Mother-Son Olympics at N's school, where he participated in most of the events, including the 'ski jump' (a leap onto a gym mat after running along a picnic-table bench). He went far on the jump, earning our team a bunch of points, and our teammates cheered him, loudly, when he landed. At which point he looked up, startled, burst into tears, shrieked loudly, and ran behind me to put his head under my coat. (That's him, after he'd recovered himself, in the photo up top.)

And then there was the Passover seder at our house on Monday, where N greeted my friend and work colleague, K--with whom he is unabashedly in love--by telling her "your hair looks weird" and refusing to offer any more of a greeting, then proceeded to completely lose his ability to deal, shrieking and wailing, when his friend C erased something he'd drawn on the whiteboard in our kitchen.

Oh yeah. I'm aware.

I'm aware of the ways in which N's place on the autism spectrum marks him as different, and the challenges that brings. I'm aware--once I've had a few days to regroup, at least--that there are and always will be good days and bad, and that that's par for the course with any kid. I'm aware that my son is special, but also that he's no more or less special than his sister. That he has special needs, needs special handling, but that the needing and the needing to be handled are themselves no different than with any child. It's just a little more challenging to meet those needs, is all. And sometimes it feels more fraught.

I'm also aware that N's interactions with the world mean that people will judge him for his differences. Sometimes, they will no doubt judge him harshly; this is, after all, a kid whose autism doesn't really look like autism, but often like shyness, rudeness, brattiness. He doesn't flap or toe-walk. His speech isn't obviously scripted or repetitive. His gross motor skills are fine--in some areas, they're even remarkable. Even parents who know what autism looks like might not always recognize N. (Though this weekend? You couldn't miss him.)

But I'm also aware that sometimes these people are not judging harshly. As I learned from the other mother at Weeyum's party, sometimes they understand, even if it doesn't seem like they possibly could. It may be because someone they love is "one of N's people," or it may be because they have a good and open heart.

Or it may just be because they are aware.

Bittersweet

I owe you all a couple of long posts, and certainly an explanation (not that there's much of one) for my long absence. But for right now, I just want to tell one quick story, without the pressure of having to write about all that has and has not been going on here. OK by you? Just for now?

Em's all-star soccer team was playing today; the team is actually not especially impressive, but Em's having a good time because she's on the team with one of her best friends, J. At today's game was J's aunt and her two cousins. N started playing with the older of the two boys, D, during half-time, and spend the entire second half of the game wandering around the woods behind the field, going off to the nearby playground, kicking a ball against the fence.

At one point, as they headed off to get some water at the water fountain, I saw D put his arm around N's waist, and my heart melted more than a little bit. (Psst. There's a little bit of a twist to this story, one that explains its title, and that last sentence? Was your foreshadowing/clue.)

As we left the park at the end of the game (they lost, 3-2, but that's two more goals than they've scored in almost every game they've played so far, so we were all in a good mood), N asked D if he wanted to play out in the street after they'd both had lunch. D's mom confirmed that they would be at J's house and would love to get together with N later on, and we parted company.

We were walking to the car when N, ebullient, said, "I have a new friend, Mommy. I'm good at making new friends, am I?"

I smiled at him and said, "Of course you are, sweetie."

But it was a bit of a sad smile. Because D? Celebrated his 3rd birthday just a few days ago. And N? Celebrated his 9th last week.

And if anything encapsulates the quirkiness that is my son, it's those two numbers--and N's complete lack of awareness of them.

When My Heart Is Coming Out

N's OT-based social-skills classes have been renewed for another six months. Despite my fears that this would be a fight, it was actually a complete non-event. I'd like to think it was based on the fact that it's obvious to everyone that this is good for him. but it may also be based on the fact that I passive-aggressively sent my request for a June reassessment meeting to the head of special ed for the district, noting that I couldn't find the email address for our case worker (or whatever he's called) on the district website. (Which I couldn't...but all I had to do was email our speech therapist, and she'd have sent it to me.) And maybe that email had some very carefully worded sentences that made it clear that it would be in everyone's best interests to just give me what I wanted so I'd not take up scads of their time trying to press my case at such a busy point in the year.

A victory. There have been a lot of them, lately. (Dinorama, anyone?) But then there are the side-steps, and the step-backs, and the I-have-no-idea-what-to-call-thems.

While the kids were in religious school on Sunday, I went for a walk with a friend, and she was rhapsodizing about how far N's come in the last few months. But then there was a field trip to a local kosher frozen yogurt shop after school was over (an annual treat for the kids...and yes, our religious school is small enough to fit in a yogurt shop, with room left over for other patrons to move around), and it was just too much chaos for N. Suddenly, he was refusing to talk to his friend from his class, who was trying everything he could think of to engage N. N, trying to get away, crawled under my friend's chair. This is not, to put it mildly, typical eight-year-old behavior.

"I think we need to consider these advances of his on a sliding scale," I noted dryly, as he squeaked and barked and refused to use any kind of intelligible language.

And yet...about ten minutes later, when the other kids had moved away and left him to his own devices, he came out from under the chair and asked me if he could "run a little bit outside." I told him he could run back and forth in front of the shop, which he did, the other kids watching him a bit bemusedly. Still, it was exactly what he needed to regulate himself, because when he came back inside, he was a changed boy. Walked right over to his friend and started a conversation, asked him if he wanted to go outside and sit with the big kids. As if he hadn't just acted like a feral kitten for 15 minutes.

There are other things, too. I get notes from the OTs each week, and they make a point of noting that often N needs special accommodations in order to participate in certain activities, things that are too 'scary' for him, like the indoor, low-to-the-ground, zip line. What does it mean for your chances on the playground when the demands of occupational therapy are too much for you? And these notes also say things like, "N was able to elaborate on topics today, yet was perseverative at times." What does it mean for your ability to keep up socially when you're the one who's noticeably perseverative in a room full of kids with autism diagnoses? These things, they worry me.

Also, his language is still awkward at times. Just seconds ago, I heard him tell his dad, "Pick up me." When he dropped something earlier and was whining that he couldn't clean it up by himself, he told me, "I need help by you." Again, he's eight. He's been eight since January. But, on the plus side, we're closer and closer to getting what he means, more and more of the time. And his linguistic quirkiness isn't always such a bad thing. Sometimes, it seems like a gift. Sometimes, the best times, it is pure poetry. Again, from his OT session notes: "When defining love, N reported that it's 'when my heart is coming out.'"

I may worry and fret over him, and maybe at times I seem overly negative and focused on the deficits, but that's here, when I'm writing, when I'm thinking, when I'm...yes...perseverating. But mostly, when I'm with him, my heart, too, is coming out. All the way out.

During/After

During my meeting with N's teacher today, she told me about how pleased she was with his advances since he's begun the OT social skills group. She mentioned, as an example, about how when one of the boys in the class was giving N a hard time the other day, instead of putting his hands over his face, shouting "No, no, no, no, no," crying, and/or essentially shutting down completely, he instead wrote a note to the teacher to say, "I am mad at K. I don't like what he did." And, later, she said she heard him tell K, "I don't think I want to play with you any more today," instead of just hiding himself away from everyone on the playground during recess.

During my meeting with N's teacher today, we agreed that this was huge, and wonderful, and a perfect example of why he needs this group so much, and how much good it will do him to stay in it.

After my meeting with N's teacher today, all I could think was, "What the...??? What did K do to him? Are kids already picking on him? Why doesn't he tell me about this sort of thing? I'm gonna kill the little fucker who picked on him..."

During my meeting with N's teacher today, we talked about how hard it is to pin down a diagnosis, a label, even a good idea of what his learning differences ARE so that they can be addressed. I was asking her for guidance. I wanted her to tell me, from what she's seen, which avenue I should be pursuing when it comes to further evaluations for N. She agrees that it's likely his speech therapist will dismiss him soon, probably at the next yearly IEP, next January, and that we need to come up with something else that will qualify him for special ed, and she's not quite sure what that is. But she did tell me that she'd recently spoken about N with the school's principal, and that there may be a way in through an ILP, Individualized Learning Program, if he does as poorly on the statewide testing as we assume he will. Apparently, an ILP flags a kid as 'at risk' of being 'left behind,' and normally would prompt an IEP. Of course, since N already HAS an IEP, it might instead prompt a reevaluation of that IEP, since the low test scores would indicate that the IEP is not optimally effective quite yet.

(Clear as mud?)

During my meeting with N's teacher today, I was feeling optimistic about that idea, hoping that it might provide a way in to a more appropriate special ed placement than having him in speech therapy as a way to get him occupational therapy.

After my meeting with N's teacher today, I again began to think, "What the...??? Why have I never heard of an ILP before? How does it work with an IEP? Will it help me at all? Have any of my special ed Twitter posse a clue about all this?" (The answer to that last one: No. Which makes me suspicious. And there's almost nothing I can find about it on Google, either. Which makes me even MORE suspicious. Though I have no idea what I'm suspicious OF.)

During my meeting with N's teacher today, when--as I mentioned above--we were discussing the difficulty in pinning down just what we're dealing with with N, I told the teacher how I've always thought it would be so much easier to advocate for him if I could just know what the root of the problem is. Is it anxiety? ADHD? A learning difference that causes anxiety and/or ADHD? She agreed with me, but couldn't shed any further light on it. "In my 16 years of teaching," she said, "I've not come across a child exactly like him. I can see pieces of him in other students who had easily definable problems, but not enough to say that any one of those things is IT."

During my meeting with N's teacher today, I felt an absurd swelling of pride when I heard that. I think we all like to think that our child is special, unique, one-of-a-kind.

After my meeting with N's teacher today, every time I thought of that same statement, I wanted to cry. One-of-a-kind began to feel like needle-in-a-haystack. Unique began to feel like unknowable. The emphasis on special began to give way to an emphasis on needs...needs I don't know how to fill.

During my meeting with N's teacher today, I felt hopeful. If nothing else, he has some pretty amazing people on his side, as evidenced by how much this teacher cares about him.

After my meeting with N's teacher today, I'm finding that hope a lot harder to sustain. I just don't know if having amazing people on his side will be enough, if none of them have any answers.

IEP: The Long, Medium, and Short of It

The really long: Is too long to get into. I started, and then I gave up. There's too much background needed. If you don't really know what N's deal is, feel free to browse through some of the N-related categories (cleverly titled things like "N" and "IEP" and "school" because creativity is my middle name). But, really, it can be summed up like this: He's this awesome little boy who is, by turns, incredibly smart and funny and flirty and wonderful and then cripplingly anxious and shy and unsure and incapable of showing anyone what he knows and can do. And it's hard to know which child you're going to be dealing with on a given day...or in a given hour.

The still pretty long: This may just be the first time that I ever went into a meeting about my son--and there have been many of them over the past four years--where I learned something new about him, heard things that surprised me. Some of them were good, awesome even, like that he's finally agreeing to read to his teacher, and on the occasions where she has his cooperation, she's been able to ascertain for herself (if not via testing), that he is at LEAST on grade level with his reading. I knew he could read just fine, but I had no idea he'd broken through his inability to show it in school. And while I knew he was not a troublemaker in school, I had no idea that he is one of the kids the teacher can count on to do what he is told. He needs an inordinate amount of hand-holding, which was the key to a lot of the accommodations and other discussions we had, but he isn't mouthy, or nasty, and he never ever ever gets in any of his peers' faces. (The flip side of this being, of course, that he pretty much never ever ever interacts with his peers. Which is a big problem. But that's not news.)

Of course, there were some less happy surprises. If the lack of peer interaction isn't news, the level of continued deficit wasn't clear to me. See, last year, he had basically ZERO in-class interaction with other kids, at pretty much any time of the day. This year, people had been making a huge point of telling me how much better things were with him during recess, and he was telling me about things kids said to him in class, etc. Which I took to mean it was OK to stand down on the social stuff, but which really meant that he'd gone from zero to five, not zero to 100. I also heard about how, when stressed out by some new task or something he can't handle in the classroom, he's started reverting in his speech...not to baby talk, per se, but to very basic language, which is worse, because I don't think he knows he's doing it. (The example the teacher gave was of him coming to her with a project he was simply lost on, and saying, "No do." And when she pushed him, he finally said, "I do one part, then not do rest, OK?" Which is...disturbing.)

Now, see? I start writing them medium, and it turns into the medium-long, and soon it'll be the ridiculously long, and none of this is relevant to the basic outcome here. So, let me put on the reigns for a second and get down to the nitty gritty.

The medium: At last year's IEP, N qualified for special ed due to speech delays. They gave him 60 minutes of speech a week--30 minutes of group to work on pragmatics and social skills and such, and 30 minutes individual to work on more of the specifics. For the IEP-savvy, he had three goals, all of which he did well on, but only one of which he's officially met.

They also gave him 60 minutes of Occupational Therapy PER MONTH, 30 minutes in the classroom every other week. In OT, he had one very broad goal. I wasn't happy with that, but we were lucky he was getting any OT at all, since without an autism-spectrum or some other 'qualifying' diagnosis, it's hard to get into special ed. And it's been OK, because his speech therapist has pretty much understood from the outset that the social stuff and the speech are connected, so that their individual time together has often included a walk around campus where she's worked on having him greet adults and other children, down to rehearsing appropriate responses with him, etc. (Her comment to me at some point today: "And lately, he sometimes even does what I've asked him to do, rather than crawl under the table when someone new approaches!" Oy.) So things were being addressed to some degree, if not directly, at least in some way.

And while the amount of OT he was getting was pretty minor, I wasn't all that impressed with what his then-therapist was doing with him anyway, so...you know. My concern was that, over the year, the academics were becoming a bigger and bigger issue, and I didn't know how to get them to attack that, because nobody seemed to understand it.

Fast forward to this year. His teacher is simply wonderful. Last year's teacher was great, but this woman is superlative. He has a new OT, with whom I hadn't been happy...until I met her today and realized that, even if she's been too busy to touch base with me with any frequency, she has it going ON. She gets him. She has ideas about what's going on with him to the degree that, as I alluded to above, I actually learned something new about him. She was talking about issues that I had never really considered myself...in other words, I hadn't LED her to any conclusions; she'd come on them on her own. A true first. And even better, she thinks he would benefit from MORE: more help, more time, more focus on what's really wrong here, more effort to make sure that this is what's indeed wrong.

The kinda short: When I walked into the IEP today, I was prepared for them to try to argue me into agreeing to take him out of special ed entirely and just work with the classroom accommodations we have, and considering the week I've had so far (it simply CAN'T only be Wednesday!) I was going to hurt someone if they even tried. (More likely, I'd have just started crying. Which would have been worse, in my eyes.) So I was revved up, wound up, tense as tense can be.

And it was obvious. I ran into the speech therapist on the way in and asked about whether another therapist I'd hoped would attend would be there. She said no, and when she saw me take a deep breath, said, "TC, trust me on this. We have a plan here, and it's one I think you're going to be very happy with."

She's right. By the end, I was ready to kiss all of them. Maybe even on the mouth.

They *are* cutting his speech--but they're cutting it BACK, not OUT--from an hour to a half hour once a week to continue work on "social pragmatics" in a group setting only, which is fine by me. Because here's the good stuff: They are increasing his OT from 60 minutes a MONTH to what will turn out to be 75 minutes a WEEK, by placing him in a socials skills group at a child-development facility near where I work. FINALLY. A social skills group. That's what I and many others have been saying he needed--but which we couldn't afford--since he was 4.

Of course, there's always a downside. But if there has to be one, I think this one's pretty minor: The district special ed guy was apparently annoyed by the request for him to go into the clinic every week--since that will cost them more and hey, did you hear? There's a recession going on and money is tight. So he insisted that the off-campus OT service be revisited in six months (early July) rather than the usual year from now. Which is fine by me; or, at least, I'll take it. Because I know these people will make the case for him if they think he needs to keep on keeping on in the social skills group.

Oh, and did I say? The OT thinks there's a very strong case to be made that the issues that are behind the social stuff--which she says involve praxis/motor planning and ideation and lots of other jargon that even went over my head but which, when explained, made sense--will address the classroom and academic issues. If she's right, I WILL kiss her. On the mouth for sure.

The very short: Yay! Now all I need is to keep my job, so we can stay in this school district. Because otherwise it would just be too...too. I don't even want to think about it.

Breaking News, Via Text Message

Baroy: They just had to pick partners in golf. N grabbed a kid and told him they were partners.

Me: Get OUT of here!

Baroy: The kid's name is C.

Me: How old is he?

Baroy: About the same age. N just got 10 points, as did C, then walked over to C, slapped his hand and said, "Way to go, Dude!"

Me: That is not my son! Where did my son go?

Baroy: C and N just won the little contest. Coach is impressed by the way he hits out of the sand.

Me: Whoever this pod N is, make sure you bring him home, not the old one.

Baroy: He's also volunteering to do things.

Baroy again: I could probably leave and he wouldn't even notice.

You know, there's progress, and then there's not even fathomable behavior. Not running behind Baroy or the coach's legs when another child asked to team up with him would have been progress. Going up to one of the bigger kids, one of the 13 or 14 year old kids and asking to be their partner would have been big progress. But this? Taking the initative with a PEER? Seriously? I don't get it. Where does this stuff COME from? And how can I make sure it sticks around?

I always thought golf would be good for him, but I never thought it would do THIS. I am literally sitting here with tears in my eyes as each text message comes in.

That kid. That incredible kid. He really CAN do anything.

Push or No?

I'm looking for advice here. But first, a little bit of background: I've talked so much about N's social issues--and about how much better things have been of late--that it's hard to find one post that summarizes them. Suffice it to say, he has social issues. He's had them for a long time. Also suffice it to say that those social issues are becoming squished into a smaller and smaller area of his life...an area with an epicenter that sits squarely over his school. Put more bluntly: He has many social problems at school, not so many outside of it.

More background: His birthday, last year, was an unqualified disaster...if only from my point of view...and it's taken me almost a full year to shake off the feelings it engendered in me.

So, on to the advice-needing. In order to avoid last year's birthday mistake, I resolved to begin planning (and inviting) EARLY this year. And so, today, I started talking party-planning with N. We came up with the idea of having a golf party here--OK, so it's actually an idea my friend Deb had a year ago, but I remembered it and brought it up and N thought it was great, so I'm taking credit--for which we will set up a little miniature golf course in the backyard, and I'll give all the kids plastic putters and golf balls as their goodie bag gifts, and they can play with/beat each other over the heads with them while they're at the party. Fun for all! And N is already planning the 'golf cake' I'm going to make for him...with PINK grass. (Since he was three or four, this kid has had it in his head that the only yummy cake icing is pink cake icing...and he's insisted I use it on every cake I make for him.)

Then we sat down to make up an invite list. First up, of course, was WeeyumWise, the Best Friend Since the Beginning of Time. Then, in quick succession, the names of all the kids in The Gang. And six kids from our block, five of whom are significantly older than N. Then silence. And so I prompt: What about your friends from Hebrew school? His face lights up. "I forgot! We have to invite Zach! And Lex!" Great. And who should we invite from school? My pen is poised to write, until he says: "Nobody. I don't want to invite nobody from school."

He won't budge. "I just don't want to," he says in reply to my repeated entreaties, to my suggestions of individual kids he seems to like. "Nope, not him. Not her either." Finally, I ask: Do you feel like you don't have any friends at school? He nods, then shakes his head a little and names a couple of kids who are his friends. But then adds, "But I don't want to invite them to my party. I just want these people on the list already."

And so my question: Do I overrule? Do I assume he won't remember this conversation a month from now, and send out invitations to his classmates anyway? Do I keep pushing him on a regular basis to rethink this decision? Or do I simply respect his opinion, and invite the 16 kids he DID put on his list, and leave it at that? Because that's a lot of kids, right? Even if about half of them are really Em's friends?

I know this is mostly about me. It's about me wanting him to have lots of friends, and thinking that his not wanting to have anyone from his class at his party means he's an outcast there. As if inviting them would change that if it were true. As if attending a birthday party is a sign of true friendship. I'm just being stupid. That list has seven or eight little boys and girls who N really enjoys spending time with. They are his friends. They are his real friends. That's good. That's a victory.

Truth is, when I got over feeling the gut-punch of hearing those words come from my sweet little boy as he sat on my lap planning his party...when I got over that, I had to admit that choosing not to invite the kids from his class--the kids he chooses not to play with on a daily basis in the school yard--was a pretty mature thing to do. It felt like something he meant, that he was sure about. It didn't feel like it was coming out of thin air, or out of some external pressure he was picking up on, like so much of what he says and does. And I guess I should respect that. Because he is asking me to. Because he is telling me what he wants.

Right? Wrong?

Peers

After the sleepover on Saturday night, I drove the kids to religious school in the morning. Zach and N took a few books about firefighters and fire engines into the car with them, and Zach read them to N.

Moment one: Zach is about six months younger than N, but is reading at a level WAY above most 6-year-olds. To wit, he read sentences that said, "The fire engine speeds through the intersection," and "The firefighters prepare their equipment," without hesitation. N, listening, suddenly says to me, "Mama, Zach is a much better reader than me."

"Yes, he is, sweetie," I replied, still driving. "But soon, with some practice, you'll be able to read those words, too."

"Oh, I know," he replied, and he and Zach bent their heads together to continue the story. "I was just telling you."

Moment two: N points to a picture in the book. "That firefire is climbing a HUGE ladder!"

"It's a fireFIGHTER," Zach replies, emphasizing the t sound in the second half of the word.

"I said firefire," N says, slightly irritated.

I intervene. "Zach, sometimes N has a little trouble with some words, but he was trying to say firefighter."

For several minutes after, N keeps trying the word out, trying to get that pesky T to stay where it's supposed to. It was clearly hard work.

Me, I was sitting there thinking simply, "That's one of the first times ever that someone his own age has corrected his speech," and trying to figure out if that was a good thing, or a bad thing, or...

Moment three: I'll tell you what was an unqualified first and a Very Good Thing, though. Later on Sunday, after I'd driven both boys back to our house (where Zach's mom and dad and a couple of other families from temple joined us for a late lunch and birthday celebration for one of the other kids), N and Zach were on the front porch, and N saw his friend B from across the street and called to him to come over. And then N, Zach, and B went into our backyard and played together for a while--three first-grade boys, connected through N. N, with two different friends, having fun. Thank you, god.

-------
We finally got the assessment plan from the school district on Friday, and as I suspected, it had only speech and OT listed. I'm on a deadline right now (which is why I'm blogging, of course), but as soon as that's done, later today, I'm going to sit down and write a draft letter in response to the plan. My basic idea is that it will say that I do indeed want these assessments to be done and that I give my permission for them, but that I also believe a social/emotional assessment is essential to the process, and to N's success in school. I will then likely add that by diagnosing and suggesting medication for my son in the team meeting last week--before ever meeting him--the school psychologist has removed himself as the person who should be allowed to do that assessment. I will then ask the district to recommend who *they would like to pay* to do such an assessment, since the school psychologist's suggestion in the meeting that I should have him assessed myself (since, you know, I have private insurance) was equally inappropriate.

I am so over these people, I can not even begin to tell you. But I do hope to begin to tell THEM.

Clutching

Em still likes for me to lay down with her at night as she falls asleep. Because N likes this, too, I alternate nights with them. Tonight was Em's night. As she started to drift off, I felt her hand search around under the covers for mine, and then, when she found it, she wrapped her big-girl fingers around my pointer finger and my heart positively splintered with happiness as I was lurched suddenly backwards ten years to when she was a newborn and would hold onto my finger as she breastfed, as she screamed, as she drifted off to sleep, as she began to explore the world.

-------
Today was part one of N's IEP process--the part wherein we discussed what kinds of evaluations need to be done before we can begin to discuss what services he needs in the classroom.

Bottom line: I'm not sure it went well. Actually, I'm half certain that I got fucked. But I don't know for sure, because I was alone, and I can only take so many notes while trying to watch out for the multitude of barriers--however camouflaged--being thrown up in my path with every word I said. (I had to go alone. There was no one other than Baroy available to watch N while we met--at 2:15 in the afternoon, there aren't a lot of babysitters available, and unfortunately, since one of the main points was his SOCIAL ISSUES, I didn't really have the option of sending him home with a friend, you know?)

I'll see tomorrow, when I'm supposed to get the written assessment plan, but I think the only assessments will be for OT and speech...with the latter being given quite reluctantly, to be honest, after the speech therapist talked about having 'chatted informally' with him and seeing issues, but nothing that would likely qualify him for services. That tune changed a bit when I announced (thank GOD things worked out this way...literally two hours before the meeting) that I had made an appointment with one of the top private SLPs in the area for a private assessment in mid-November. There was a bit of frowning around the room after that, and a relatively ham-handed attempt by the school psychologist to totally undermine me. [Him: Do you maybe want to put that assessment off until after you see what our testing has to say? Me (in my head): Why? So you can deny services and then force me to wait another six months or a year before you have to consider the assessment I get? Me (out loud): Oh, she's so booked up, I'm not giving up this appointment! We'll just see if anything she has to say adds to the mix. Can't hurt, right? Him: (Forced laugh.) Speech therapist: Well, then, I'll just make sure to cover everything that might be addressed by your evaluation! It'll save us all time. (What she was planning to cover if I *didn't* have such an eval planned is anyone's guess.)]

[An aside: $400 for a speech assessment, of which POSSIBLY half will be covered by insurance. Or maybe none. Would it be too obvious a pun to say that I'm speechless?]

It's funny, because on one level it SEEMED like it was a very positive meeting, and that everyone in the room was concerned about him and agreed that there were issues. But then there were all these red flag moments. Most red flaggish was the psychologist's immediate determination--without ever setting eyes on my kid--that he has social anxiety disorder and needs medication. "You have private insurance?" he kept asking me, over and over. "Because social anxiety falls under a MEDICAL issue, not an academic one..." He did mention once or twice ways in which he could help me navigate that part of the issue once/if N is 'in the special ed system,' which sounded like he thought he'd qualify SOMEWHERE. But he also said things that he clearly thought were going to be reassuring but were actually just obnoxious and condescending, such as, "We'll definitely be keeping an eye on N over the next couple of years to see how he's progressing." [Um, DAMNED STRAIGHT you will be. Because I'm going to be on your asses from here on out.] To me, statements like that are echoes of the preschool assessment, and are saying nothing more than, "We're going to deny you services again, but don't worry...We'll keep an eye on him, and when things are really messed up, THEN we'll step in. It may be too late by then, but we'll be there for ya!"

In the end, when I asked the psychologist point-blank if he was going to actually assess my kid he said no. "Again, these are really medical issues, which you need to address outside the district. You said you have private insurance?" In retrospect, I know that that's bullshit, and I'm thinking that what I might do is to sign the assessment plan (after all, I do want the OT and speech assessments, and I want them done NOW) but attach a note that says that I believe that the lack of social/emotional assessment will be detrimental to my child's overall progress and that not considering those issues will be setting him up for academic failure. (I have a huge book on special-ed law that a special-ed maven/friend of mine from the school loaned me, and it will only take a short while for me to be able to cite chapter and verse from it with regards to their responsibilities in this arena. We'll see how I feel when I get the official version of the plan from the school.)

There was also a lot of commenting about how smart N is. Which, again...Sounds nice until you remember that these people tend to base--or try to base--their decisions on academics. And if he's doing OK in class...then what's the big worry? Luckily, his teacher was fairly vocal on the ways in which his emotional issues (she called them self-esteem problems, which breaks my heart, but again...I'm not going to complain about the verbiage. I just want results) are affecting him in the classroom. So you'd think that's good, but...I don't see where this assessment is going to deal with that. Unless the district OT program is a good, broad one that goes well beyond working with him to cut a straight line and draw a recognizable human figure. Which, if you know school districts, is so unlikely as to be freaking hilarious to even consider.

Like I said, I got a feeling that everyone (except maybe the psychologist) thinks there are problems, and thinks he needs help. I got this feeling especially from the speech therapist, who I just...I don't know. She seems really smart, and she seems to get what I'm talking about--she was the one who had referred him to the preschool assessment team back in 1995 because she thought he needed to be evaluated for an ASD (autism spectrum disorder). But at the same time, she seems desperate to NOT be the one to help me. So she did a lot of telling me how she didn't think he was going to qualify for speech, but at the same time kept making clucking noises about how he seems to have sensory integration issues ("Make sure he gets an OT assessment," she kept saying to the special ed teacher who was leading the meeting) and how the fine motor delays he seems to have ("See why he needs that OT assessment?" she said again) fall into the same sort of category with the sensory issues, and how that could affect speech...BUT that she thinks his articulation falls within reasonable levels. Which...she might as well have just said, "Look, I think he needs help, but I'm swamped as the only speech therapist for like three or four area schools, and I'm doing whatever I can to avoid having new kids assigned to me unless they're mute." At least then I would have known where I stood, right?

My favorite moment (and by favorite I mean the moment I most felt like hurting someone but was glad I held off when I watched their faces as I spoke) was when the special ed teacher, noting my not-so-positive response to the idea of getting N into the care of psychiatrist for social anxiety, said to me, "I know how you feel about medicating a child; many of us would feel the same way. But, really, if you think about it, if he had diabetes..."

I didn't even let her get CLOSE to finishing that sentence before I cut her off. Now, mind you, I was smiling through this whole meeting, from start to finish--friendly and eager to please and almost physically incapable of being truly contentious, even knowing that what I really want is for them to fear me. (Shit, I actually volunteered to edit the school's reapplication for California Distinguished School status--I worked on the original, successful app four years ago--while we were waiting for the speech therapist and N's teacher to arrive. Eager to be liked, much?) So what I said probably didn't sound as harsh in person as it does here. Or maybe it does. "Listen," I said. "I've written about mental health...I've written a *book* on mental health, on bipolar disorder, and I USED that EXACT example. I WROTE that exact example. I get it. But I'm not putting my kid on drugs until I'm absolutely certain that I've exhausted all the other avenues--and until I'm certain that that's the problem. And I'm not certain of either." And I smiled sweetly. And she shut up.

But it was a small victory in a day of what felt like much larger...non victories? I don't know. I think that's the worst part of this process. Being new to it all, I don't know where the traps are. I don't know what victory looks like. I don't know what failure looks like. I don't know what I did or did not achieve today, and I don't know how what I did or did not do, said or did not say, is going to affect what happens in two months from now, when we have our actual IEP meeting. I've gotten tons of fabulous advice about dealing with special ed, much of it from people reading this blog, but almost none of it was able to help me make heads or tails of the subtle undercurrents of what was going on in that room today between the five of them and the one of me--the only one focused solely on the needs of the little boy watching Spongebob and waiting for Mommy to come home and help him do his homework on odd and even numbers and quiz him for his spelling test on Friday.

Burst bubble

[N, putting, at the gorgeous-beyond-belief children's golf academy where he takes lessons]

I was doing my Thursday-in-the-first-grade-classroom activity--distributing the week's marked-up work into folders for each individual child--when I noticed that almost all of N's work from class, especially anything involving language arts, had a "with help" written on it. I decided it was probably time to ask the teacher for a sit-down, just to check in on how N is really doing. I've been buoyed by watching him really 'get stuff' when he does his homework, and by watching what seem to be his blossoming social skills in a variety of different social situations, like his golf class and at Hebrew school, etc., but I still wanted to check in to make sure this wasn't a real issue, and to maybe ask the teacher about how she thinks his speech is.

By the time I was done with my 'job', the class was outside having recess. As I approached, N came over from the bench where he was still working on his snack. All the other kids were on the playground. Suddenly, his teacher appeared:

"Mrs. Confused! Thanks for all your help today. I do have a favor to ask of you, though...N, would you please go clean up your snack so I can talk to Mommy?"

Uh-oh. "Yes?"

"Um, could you maybe work with N on getting him to join the other children to play during recess? This is my first time on yard duty this year, and I hadn't realized, but he doesn't play with the other kids. And when I ask him to go play, he sometimes refuses. I can insist he go out there, and I do, but then he just stands on the sidelines as a bystander, sucking his thumb, and..."

I hold up my hand. "Funny you should bring this up. I was coming out here to ask if we could set up a time..."

"...for a conference? Oh, good. I was hoping we would get to talk before the end of the first marking period."

"Yes. I was wanting to talk to you about his classwork, but also to get your input on some other things. For instance, I'm planning to take him to get a speech..."

"Oh, I've already asked several times for the speech therapist to do an assessment on him, and she says he's already on her list, but she hasn't gotten to him yet."

This was followed by a not-worth-recording conversation about how to make that happen more quickly, and another on how she (teacher) should not for a second think that I (mother) am not aware of any of these issues, etc. And then I left. And even though I was the one who was going out there to talk to HER...I felt totally deflated. I guess I was hoping that we would just talk about how he's having trouble following directions, but otherwise he's just fine! Totally normally! All the kids love him! Nothing to see here, you over-involved, worry-wart mom!

But, instead, I got: He has really obvious social issues. I got: I told the speech therapist I thought it was important for him to get help RIGHT AWAY! I got: I'm so glad you want to talk about this because I think it's important to work on these issues RIGHT AWAY! Time's a'wastin'! This kid isn't going to get any better just because you wish it away, you know! (OK. Maybe that last one wasn't so much verbatim, but it was clearly her point.)

What it really comes down to is that instead of, "Yeah, I see what you're saying, and you're right, but I hadn't really been thinking about it much because it's just not that big of a deal," I got, "I've clearly been thinking about this a lot, and acting on it, too, and I just wasn't sure yet how and when to bring it up to you, but it's big and it's obvious, and he may be looking better to you these days, but to me, meeting him for the first time, I see deficits, and they're glaring, and you really do need to do deal with them." And that's depressing.

I've been down this road a minimum of 76 times before, of course. Most of you have read it; most of you are doubtless tired of reading it and having it go nowhere. You know those times...where I get all het up to do xyz to help N, where I recognize that there's a problem, but then I start to see progress and start to wonder if I'm overreacting, only to have The World slap me in the face and say, "No! You're not overreacting! Progress does not mean over and done with. How many times do I have to tell you? GET HIM HELP." You'd think that by now...

Once the letter to the school district--the one I just finished writing--is received, they have two weeks to do the assessment. But (I know, I know) that likely won't be enough, so I'll get an outside SLP appointment set up, too. I was hoping to wait until after the likely-to-be-combined hernia-and-testicle surgery to do it, but that may not work out, since he still needs to be seen by a general surgeon before we can even schedule that. And that may take more time than, it turns out, I should let slip past. Already, it's been nearly 7 years...or, to be fair to myself, between 4 and 5 years since I first noticed a problem. Perhaps it's time to stop waiting for 'the right time.'

---
BTW, on a completely unrelated note, today is Baroy's birthday. 52. He's so OLD! But I love him anyway. Happy birthday, hubby mine.

Shove

N gets out of school 20 minutes before Em does, so we wait on the playground and he hangs around with his first-grade friends and the other first-, second-, and third-graders who have fourth-, fifth-, and sixth-grade siblings. (The middle of that sentence--"and he hangs around with his first-grade friends"--is a freaking miracle, by the way, and don't think I'm not well aware of it. I thank God, the universe, and whoever else might be responsible for it on a daily basis, don't think I don't.)

As I stood talking to another first-grade mom today, N suddenly came over, crying, and hid behind my back. "He called me 'weirdo'," he said, pointing to a third-grader standing across from us. I looked where he was pointing, and the little boy immediately began sputtering apologies--"I didn't mean it! We were just fooling around! He was bothering me!"--in that way busted little kids always do.

I pulled N around so I could look at him and said, "You're not a weirdo, and you know it. You can tell that boy it's not nice to call names, or you can just ignore him, but go and play with your friends."

N nodded, then walked right up to the boy...and shoved him. Not hard. Just one good, solid shove.

I gaped for a full minute, then began the official dressing-down-and-punishing routine, which included going over the little shit...um, I mean, the boy he'd pushed...and apologizing to him.

But, really? In my heart? I wished he'd kicked him, too.