life with an ... unusual child

so our oldest, who's 4, is soon to through a big assessment to figure out, basically, what's going on with him. i don't think of it in terms of what's "wrong" with him, because he doesn't seem to me to have anything exactly wrong with him, but he is a peculiar case. he was a very premature baby -- born at 27 weeks -- which pretty much puts you at high statistical risk for everything from autism to dyslexia. and i think that what's going on with him is most likely some combination of effects of the prematurity plus just his own little character quirks -- although of course sorting and separating those things is kind of impossible.

what i should say is that he's definitely not autistic. well, i say "definitely" like i'm some expert on autism, which i'm not, but he doesn't exhibit the classic signs or symptoms. he's very emotionally attached and connected to other people, he can be very social (although he tends to hang back in a crowd, but he's very aware of what's going on with other people). he seems plenty smart to me, and he learns new things all the time. he's a whiz on my computer. the biggest most obvious thing is that he doesn't talk a whole lot -- compared to most kids his age, his vocabulary and pronunciation are pretty primitive, he still mostly expresses himself in short phrases, and most people who don't spend a lot of time with him have trouble understanding what he's saying. on the playground, other kids come up and try to start conversations with him, and he just kind of shrugs them off. he's happy to play with them, but doesn't want to talk to them. because of being so premature, he did get therapy services up to the age of 3, including speech therapy. when that ended, we figured we'd sort of see how it developed, but i think he's pretty clearly going to need more speech therapy, at the least.

the teacher in a music class he's taking (where he is sometimes engaged, sometimes not) suggested the possibility of sensory integration problems, which is sort of the latest growing field of disorder studies (on the heels of ADD/ADHD, dyslexia, aspergers, etc -- it seems to be kind of a catch-all category where a lot of kids fall who can't be easily labeled something else). we've got some books on it, and there are occasional passages that seem to fit, but it's such a broad category right now that a lot of what gets lumped into it doesn't match him at all. it's a relief in some ways, because some of the things described in the books are much more severe than anything he seems to have, so we've had a lot of "oh, at least he's not like that."

the big concern at the moment is that he's supposed to start kindergarten in the fall, and i'm really not sure he's ready. we'd really like to just hold him back a year, give him time to catch up a little and do kindergarten next year, but the new york city schools are kind of nazis about it -- you start kindergarten the year you turn 5, period. you don't actually have to go to kindergarten at all, it's not mandatory, but first grade is -- so if we don't enroll him in kindergarten this year and bring him back next year, when he'll be turning 6, they'll just automatically put him in 1st grade, and we don't seem to have a lot of recourse on this. (other, smaller school systems are more accommodating. my sister kept her son back a year in maryland and the school system didn't care at all. i'm not really sure why new york is so militant about it, except i guess when you're dealing with a million kids or whatever they have, you just hate to make exceptions for anything.)

meanwhile, we're going through this whole assessment thing, so even if he does start kindergarten this fall, by that point we'll hopefully have some better identification of his specific issues, and we'll hopefully be able to get the school to address them to some degree. this will almost certainly entail getting him "labeled" under some special education category or other, but that doesn't bother me. the only thing i'm concerned about is making sure the label, whatever it is, is right, and leads to him getting whatever attention he needs. the good thing about a special-ed label is that it triggers a whole set of federal requirements that the school system has to adhere to.

anyway, on a day to day basis he's tons of fun to be around, he has a lively mind, he's physically fine, fit and well coordinated -- he loves music and dancing, playing ball, doing puzzles, painting, wrestling with his little brother. (and did i mention the computer games?) i just hope we can steer him through the next few years ok, because it's going to be dependent on finding some teachers and other people who take the time to get a handle on him. he's definitely going to be a bit of a challenge, and i worry about him getting lost in the shuffle. but i guess that's where we come in, to make sure he doesn't.

don't really know what i expect anyone else to say about any of that, but it's sort of the central focus of our parenting these days.

jeez, i know that's a monster post, sorry. once i started writing it, it was hard to stop.

I thought a lot of parents were keeping back kids (esp. boys if I remember correctly) who are eligible for kindergarten an extra year. Like it's a trend. So, you are saying New York is not ok with that.

Oh, wait, you did say that. That sounds dumb, but Board of Ed not known for adapting to the times.

I'm no autism expert, either. But, from some limited experience (see below), I know that autism is just one of a series of conditions loosely called Pervasive Developmental Disorder. And some of the "classic signs or symptoms" of autism (e.g., lack of intuition about other people; complete social isolation; rigid, repetitive behaviors) are very far from what you'll find with some people who have other PDD conditions.

My daughter's 6-year old cousin was diagnosed as PDD-NOS (Pervasive Developmental Disorder -- Not Otherwise Specified), with some signs of high-functioning autism. She has been slower to develop language and writing skills (but she now speaks pretty well and is beginning to write), she sometimes has a faraway look and seems to get lost for a moment, and -- once in a while -- when she was younger and we told her she couldn't have something she wanted, she would "shut down" (lie face down on the floor, arms at her sides, and not move for minutes). But, OTOH, she is friendly and talkative, likes to be held, and interacts easily with kids and adults. If you weren't around her much, it would be easy to not know she has PDD-NOS, at all.

Some of what you are describing with you son sounds like it could be some form of high-functioning PDD (but (a) again, I'm no expert, but I've done a bunch of reading about the condition because of my niece, and (b) like sensory integration problems, PDD is a broad catch-all category). PDD can be pretty mild, thankfully. It might be something to look for/ask about in connection with these assessments.

Sorry for the long-winded post. Good luck with this, BTW.

xposts Thanks for this, Tipsy; it's really interesting to hear parents' worries/concerns et al. expressed so calmly and eloquently. He sounds like a great kid! How is he on the perception side of things? Does he seem to understand things well, it's just that he can't express himself to an equivalent level?

It must be difficult to have to put your trust in the massive nyc board of ed, but it sounds like you guys are doing everything you can to make sure he gets the right kind of attention.

tipsy, obv. I can't speak to what's specifically going on with your son. A lot of what you're describing sounds pretty...normal to me? Like, lots of kids don't want to talk to other kids at the playground, they just want to do their own thing. The short communications...does he ever speak in longer phrases, or is it maybe that he just doesn't usually feel like saying much? Also, is this your oldest kid? I gather that kid #2 can get used to hanging back when kid #1 is gregarious.

It sounds like you basically conclude something like normality at the end of your first paragraph. I had related worries about our son, now six, who started kindergarden last summer. He's done great, and has really come out of his shell. I was pretty worried, esp. since we'll be moving to France this summer and enrolling the kids in public school. But I'm more confident now that he'll be fine.

Being labeled or having your kid labeled seems... I'm not sure whether I want it. Elisabeth is definitely not on the same level as Ophelia (who was in the range of "normal", she's outside the range of several things. She's still not walking properly even though at her age 99 procent do walk. She also has "issues" with eating. Even at her age, you can tell she's not at the same level as other kids. My employee's kid is one month older and is in the right age group. Elisabeth is still in the younger group. I'm not comparing Elisabeth with yours, but I can sort of empathize. It's difficult and usually I turn on my denial mode because 1 I realize I have little to complain about since she's healthy and happy and 2 whenever I talk about with, say, my mom, she gets SUPER DUPER "she's alright!" Uh, no, she's not. I'm not complaining but to say she's a fast learner (at this stage) is ridiculous. She's not. I mean, for chrissakes, my mom used to say I was late and I walked at 12 months (which is perfectly normal). Elisabeth still doesn't walk and she's almost 17 months. We sense it's not a physical thing, just behavioral. I'm cool with that. My doctor recommended therapy (if I wanted) but I decided not to. Fuck it, she'll walk eventually. :-) (Yes, I know I'm contradictory: on the one hand I adhere to the stages but then in the end I ignore'em.)

Also, friend of ours, a psychologist, had friends who have a kid with ADD. He had so many problems in school until ultimately they basically said it was better to attend another school. They did. Didn't say he had ADD and in turn they never mentioned anything. Goes to show that labels sometimes provoke things/responses/whatever.

Ophelia was also very reticent (?) at the start of kindergarten (and before in the creche she was also a bit of a loner, tennis class was a complete disaster, she would just sit at the side sucking her thumb). Now she's super social and has lots of friends. It used to worry my husband endlessly. I didn't care as I was very much like Ophelia.

Not making sense at all. Hmm

yeah, it's very hard to know. what's "normal," what's just a kid's personality, what they'll develop or catch up on their own. some of the things in zoller's makeup look familiar to me, and i can remember being the same way -- his social diffidence, for sure. i was a slow talker too, though nothing like him. he's also stubborn and greatly prefers learning things on his own to being taught them, both of which can make it hard to know when he doesn't understand something and when he's just choosing to ignore it.

a high-functioning PDD-NOS diagnosis is maybe possible, i don't know. his delays aren't really what i'd call "pervasive," but it sounds like it's a pretty broad category. and the whole labeling thing, i think the most important thing is how parents handle it. i had a good friend when i was a kid who was found to have a learning disability -- he was academically slow, basically -- and his mother used to go on and on about it, to the extent that she almost talked about him like he was retarded or something, which was really just coming out of her own neuroses i think. (he went on to do fine in high school.) julie and i said from the beginning with zoller that we'd try to be as attuned as possible to anything he needed, but we didn't want to fall into always blaming everything on him being premature (much less encourage him to do that). in general, even super-preemie kids like him mostly do fine in the long run, but they often have some bumps along the way. so we're just trying to figure out how to negotiate them. my biggest fear is him ending up in a classroom with teachers who don't "get" him, don't know how to engage him, and so forth. but i guess that's always a concern for any kid, whatever their quirks. partly i'm just sort of freaked out about the whole sending-him-to-school thing.

(and thanks for the thoughts, everybody.)

preemies usually have to catch up the first six years, no?

shit gotta run
ophelia decided to have a cryfest

you hear 5 or 6 as a rule of thumb, but i think it really varies with the kid -- how premature they were, what health complications there were along the way, etc. which, fortunately, he's had almost no obvious complications at all, apart from the 3 months he spent in intensive care before coming home. but it is a major risk factor for pretty much every learning disability under the sun, so we're trying to be as on top of things as possible -- not expect there to be problems, but not deny them if/as they manifest themselves.

so, we've had some tests and evaluations. still waiting to hear back on the more comprehensive one. the speech/language one estimated his language skills at about a 2-year-old level, which would be a 2-year delay. that's somewhat skewed by him essentially refusing to cooperate at all during the evaluation session, which he apparently spent most of saying he wanted to go home. but it's probably in the ballpark, at least in his daily use of language (not to mention his all-over-the-map enunciation). i expect something similar, a one- to two-year delay, in the broader skills tests.

all of which will mean probably a rigorous schedule of assorted forms of therapy, which will be good, assuming we can get it all arranged and approved. (doing any of this, at least in nyc, is a complicated, bureaucratic and molasses-slow process.) more recently, we've had some serious issues at home with his sort of unbelievable stubbornness. in certain realms -- eating, for example, or, tonight, taking medicine (antibiotics for a small bout of tonsilitis) -- he is willing to absolutely go to the mat in opposition. no threat of or actual punishment is any deterrent, he just doesn't care. to get him to take a simple dose of antibiotics i literally had to bearhug him and restrain his arms and legs while my wife put the syringe in his mouth. and even at that he spit the first dose back at us. it was a real wild-man-of-borneo routine. but then 10 minutes later he's happily playing with his brother, and when he accompanied me to the grocery store tonight he was as agreeable as he could be. his stubbornness seems part and parcel to us of his developmental issues, because part of his deal has always seemed to be a basic resistance to doing things other people wanted him to. (his original occupational therapist, who was with him for his first 3 years and had a lot of affection for him, flagged his stubbornness as a likely stumbling block for any future teachers.)

it can all be exasperating, and lately i've found myself really yelling at him in frustration sometimes -- which makes me feel terrible and just makes him more resistant. so i've resolved not to do that any more, even if it means giving both of us a timeout. and by no means is it the dominant experience of living with him every day. just this afternoon i found him playing with a digital clock, making the numbers go up and counting each one as they went. i reminded him of the words for "forty" and "fifty," which he tends to forget. i've also started teaching him to spell some words on the computer keyboard. so it's not that he can't learn things, or won't learn them. but he's pretty insistent on learning them his own way, which makes the prospect of school continue to worry me. but hopefully that's what these evaluations (and more to come, no doubt) will help steer him and us through. it's kind of frustrating entrusting that kind of thing to people who don't know him at all and are just taking a snapshot of his skills based on some formula -- reading the reports, there's always this sense of "well, yes, but he's also this and this and this..." -- but i guess if we don't really understand him we can't expect anyone else to either.

(my dad, btw, has reminded me that i was an extremely stubborn child myself, prone to all kinds of fits. i do remember one episode of a nursery school teacher chasing me around and around the school while i was screaming and crying. that was a primary reason i was homeschooled for the first few years, they were afraid of what i'd do in a classroom setting. so i don't know. i hate to theorize about a stubbornness gene, but maybe there's a contributing factor there that's playing into his other things. i mean, maybe what manifests as "stubbornness" is a set of neurological things that has some genetic component.)

follow-up: we got the full evaluation today. the finding was "moderate mental retardation with pervasive developmental delays." i had thought it was possible the R-word would show up. it's a little shocking to see, i guess, but it's probably a fair assessment of his current level for his age. it doesn't freak me out as much as it could because i'm not actually that worried about his intellectual capabilities. i live with him every day, i see lots of intelligence and curiosity, and he learns new things all the time. but it takes particular forms, and it will definitely take a lot of work by us and teachers and whoever else to develop it. they also suggested some autistic tendencies, especially in some of his social unresponsiveness, but not enough to label him. mostly they recommended more evaluations, by the school system in particular, and probably intensive special-ed attention and therapy.

no idea what it all means in terms of his long-term prospects. we're sort of just at the beginning of figuring out how to handle him from here. but the thing i told my wife is we just have to remember that he is who he is, we know him better than anyone else, and any label he gets is just going to be an approximate placing on a spectrum. the danger i think is thinking of him as being some label, instead of the label being an attempt to identify things he needs and help him along.

(also the report gave us high marks for a lively and supportive home environment, which was sort of a relief. it's kind of stressful to have someone come and observe you like that. and they said he was "cute" and "adorable." so, that's something...)

thanks for sharing all this, i know it must be scary but you seem to have the right attitude. best of luck with getting your son the help he needs

i was just typing something, and i erased it b/c i'm very far from being a parent and don't know what i'm talking about. but velko's post is kind of what i wanted to say. and, it would've been nice to have a parent so attuned to my special needs.

good luck with this tipsy

i dont know much about the nyc school system but hopefully you guys will be able to find him some knowledgeable, caring and attentive teachers - there are lots of those tho thankfully

thanks. the nyc schools are daunting from a bureaucratic standpoint, but i think having this evaluation will help get things started in terms of services and resources and all. it's all a little weird to think about, but i think we've sort of accepted over the past year or so that he's an odd kid and we're not going to have a normal experience with him. (it'll be interesting to see how things are different with his little brother.) and i'm trying to resist getting caught up in worrying or wondering too much about how he'll be in 5 years or 10 years or whatever. he's lots of fun to be around (except when he's not, of course), so we just need to enjoy that and take it a step at a time.

u know, i was a pretty precocious, if gay, little kid, and now i'm a mess. so wtf knows, right? 1 step at a time, i guess.

(i know, really sage advice i'm shelling out here)

small update: we finally met with official school system people the other day. they were much nicer and less bureaucratic than i expected. from reading his report, they were ready to recommend placement in a self-contained special ed classroom. but we think he'll do better in a regular room with some extra help, and after meeting him they agreed. (he did a good job of demonstrating his counting and alphabet skills.) also, after we'd only been in the room about 5 minutes, one of the two women (a psychologist) just dismissed the "mental retardation" label; she said he clearly wasn't. she averred that he's somewhere on what they call "the spectrum," which ranges from autism to aspergers to sensory processing issues to we-don't-know-what-he-is. anyway, they're going to recommend a mainstream classroom placement with intensive speech therapy, and then we'll see what happens i guess. for now they're just labeling him speech impaired, which is sort of the mildest label they can put on him that will still guarantee services and extra attention. but they also told us to get a developmental pediatrician to really work up a fuller assessment of him. the psychologist said "i feel like we're missing pieces of the puzzle" in terms of understanding him, and i just sort of laughed and said yeah we feel the same way. so we're pursuing that.

but it was heartening to find helpful and sympathetic people in the middle of a vast educational institution like nyc schools. makes me feel better about my city taxes.

This sounds a lot like the diagnosis my best friend received for her son. They've been going through all of the therapy for a couple of months now. Someone from Autism Australia came to assess him again just the other day and was so impressed with his progress she said that although he'll still have some learning difficulties it looks like he'll soon be at a point where you cant tell he is autistic at all. He has pretty much gone from not talking at all and only looking at people out of the corner of his eye to chatting and engaging really well in the space of 6 weeks or so. So, yeah, hit the therapy with gusto and you may just see a major change really soon. Good luck!

interesting go-around this week with the schools people. we got a form letter saying he'd been assigned to a school two miles away, probably a 30-35 trek by subway and foot -- when we knew the speech and counseling services he's supposed to get are readily available at our zoned school, which is two blocks away. my wife spent a morning on the phone, calling, cajoling, crying, yelling and finally worked out that they had completely screwed up our address. (they also claimed to have sent us the letter in june, even tho the envelope was clearly postmarked july 28. as if the fact that they probably initially sent it to the wrong address should somehow count against us.) it was especially frustrating because my wife had been calling regularly since june to try to nail down his school assignment, and of course had gotten no response at all.

anyway. after talking to the enrollment bureaucrat, and then the principal of the local school, and getting them to talk to each other, we got him enrolled in the neighborhood school. and to be fair, the bureaucrat and the principal were both basically friendly and helpful once everything got explained. but it was a good first lesson in being willing to just charge straight into the school thicket and not take no for an answer (which, fortunately, my wife is good at -- she strikes the right balance of determination and damsel-in-distress).

in the meantime we've had further assessments from a pediatric neurologist and an occupational therapist, who further refined the diagnosis. the neurologist said she really didn't see him as being on the autistic spectrum at all because he was too responsive and has too good a sense of humor. but she did flag probable sensory and attention issues (which are likely connected), along with a fair amount of stubbornness that she said was going to be his biggest challenge in the classroom. which we already know. the occupational therapist said he's basically fine as far as motor skills and everything go, but she also noted the attention and focus issues. so we're going to take all those reports into school with us and talk with the teachers and just basically hope they'll be able to make some sense of it and of him.

can't believe school starts in a month. it's sort of terrifying to think of sending him there, and i know the first week or so will be rough. but i think overall it'll be a good thing for him. i hope.

dude - enormous cuddlestein mountain vibes going out for you! what an awesome and thoughtful dad you are.

so, kid starts school in the morning. this will be interesting. we've been over to the building a few times in the last week, so he's seen it, and he's excited about going. the key thing in his mind is that he's going to meet new friends. when i took him over to see where his classroom was, he looked around the mostly empty halls and said, "where's friends?" we delivered a big folder of his various evaluations and his educational plan (4 sessions a week of speech therapy plus some extra one-on-one attention). but boy i really have no idea how he's going to react to all this. i think it'll be good once he gets acclimated, or at least i want to believe it. i feel like he's both ready, in terms of really wanting and needing the kind of socialization and academic attention, and completely unprepared, in terms of not being able to really process everything he'll be expected to. i hope the benefits will outweigh the stress and confusion. if they don't, i guess that'll become clear soon enough.

let us know how it goes

well, it's been pretty good so far. as far as i can tell. his teachers seem like they're figuring him out -- e.g., the one who's the special-ed specialist realized that he listens to and understands her better if she doesn't try to make eye contact with him. and he seems to be learning things -- he's writing his name now, barely legibly, but with greater facility than before. and i've asked him about the letter sounds they're working on ("t" and "b" the first week) and he responded readily. so he's clearly paying attention in the classroom. plus i think he's winning over the teachers, which is important. one of them said he sat in her lap the other day for a long time. he's pretty affectionate, and i think that'll help him. for better or worse, i think teachers (or anyone) are more willing to put extra effort in for a kid who gives things back in terms of affection, smiles, etc.

of course, today he's home sick with his first school-borne cold. the first of many, i'm sure...

update:

a good development today. after having our first official teacher conference earlier this week, the school has agreed to move him to the pre-kindergarten class. he's really been mostly enjoying kindergarten, and his teachers have been great about finding ways to work with him, but there's no question he struggles with some basic comprehension and attention issues. (everybody keeps coming back to "sensory issues" as sort of his catch-all, although it's easier to say that than to say what it means really or figure out how to address it.) but anyway, we made clear that we want him to have as much time as he needs to grow into all this, and we said our preference would have been to keep him in pre-school this year and start kindergarten next. so when my wife took him in today, the teacher said they'd talked to the pre-k teacher (who's right down the hall) and they could take him. which is great. i think by the end of the year he'll be much more ready for kindergarten than he was in september. i have to say that overall we're really impressed with the responsiveness and just general care the teachers and principals have shown. they've already done a lot for us, it's a very friendly school.

In Ophelia's class there's a girl who has autism. I have read that autistic kids are advised to attend regular school. (Probably not extremely autistic...) Her dad often talks to the teacher and they get updates. I think it's great, truth be told.

TM, I am happy to hear your kid's doing well. Please keep us updated. :-)