First Grade

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I worry about this with my kid, who is currently in the sheltered environment of a tiny school for no more than 10 kids with Aspergers. On the other hand, the way he was handled in public school was pushing him into ODD, not improving his ability to get along with the system. I could see it happening before my eyes. At home he was not physically violent -- at school he was hitting, kicking, biting, throwing objects, etc at least once a week. I guess you just have to pick your poison from the options that you can find at the moment.


I am so with you on this one! Been there, done that, bought the t-shirt, and wore it until it was full of holes!


Great description! Since your son has a good teacher this year, and you're not in crisis mode, you're in an ok spot for now. It sounds trite to say this, but "Keep Looking". Start making a "Plan B" list of every homeschool co-op, charter school, and non-public school (aka special ed school) you come across. Somewhere in the greater Pittsburgh area there are autism support groups and homeschool groups. Look for where they talk online (yahoo groups, facebook, meetup) and ask questions about who/where the good therapists, districts, and advocates are, and for recommendations in the areas that are feasible for you to drive to. I thought I knew pretty much every option here, and just discovered a private school I'd never heard of that might be a good fit by talking to another mom about where her kid was going to school.

Yup-- comorbids developing in response to excessive stress are the other side of my fear. When you're starting to see that happen, it's definitely time to pull them out. Ye Olde Cost-Benefit Analysis again.

I'm sure you're doing the right thing, for you. I just wish-- ASD Mommy again-- that I had a concrete plan of action to do the right thing for us. I'm not wishing for a Silver Bullet Guaranteed to Work-- I hope I wouldn't trust anything offered as one after all I've been through. I just wish I had a "This is what is going on, this is what we're going to try, this is how we're going to know it is working and this is how we're going to know it's wrong. These are a couple of back-up plans if it turns out to be wrong, and this is how we're going to deal with the authoritative idiocy we're going to encounter."

I'd be happier if I could get me, the teacher, and my husband all on the same page. I've got me and the teacher...

...and trying to talk to my husband is ten times more stressful than the teacher and the kid put together. We literally can't talk about it without ending up in an argument. THIS is why parents of special-needs kids (even when it's "just" a dash of Asperger's or a "touch" of ADHD) have such a high divorce rate. It doesn't have a doggone thing to do with the kid, or the kid's behavior, or the kid taking too much time and energy away from the marriage. It's because they can't talk to each other well enough to get their heads in the same book-- let alone on the same page-- and eventually they just get sick of the conflict and sour on each other all together.

I can't do this by myself. I can't deal with this issue by myself, I can't juggle mutually exclusive ideas of what's going on and what needs to be done (at least, not when they exist under the same roof, on the same "executive board"), I can't deal with The System if I'm all on my own (or fighting The System on one hand and him on the other). Maybe a stronger, smarter, less anxious and depressed and more NT woman could do it (although the statistics don't back that statement up), but I can't.

I should just stop trying to talk to him-- insanity is doing the same thing and expecting a different result. That's not going to work, though. I guess I need to learn to smile and thank him for the empathy, and not expect a rational discussion of theory or a conversation about long-range planning. That would probably at least prevent fights.

I know he's traumatized by what happened to me. Hell, if a person wasn't traumatized by watching their anxious, depressed wife descend into medication-induced psychosis, suicidal depression, and something approaching autistic catatonia, I'd be 100% certain they were severly schizoid. But-- it happened. It's OVER. That doesn't mean that ALL help is going to do that, and it doesn't mean that "muddling through on his own" is the best solution for the boy.

In the time and place that I muddled through on my own, there were no other solutions available. But now there ARE, if we can find them-- and I KNOW that they could, had they been available, have prevented the crippling social anxiety, learned helplessness, complete and total lack of realistic self-image and/or healthy self-esteem, anxiety, and depression that have caused me SO MUCH MORE TROUBLE than the damned Asperger's itself ever could have.

So I want that prevention for my kid-- and that makes me paranoid, reactionary, hypervigilant, and a whole bunch of other stuff???? So I see a little boy who's every bit as inept as his mother was, only instead of being already quiet and withdrawn and pathologically compliant he's still outgoing and wanting to try things and determined to tell people what he thinks. I'm psycho for wanting him to not become withdrawn?? I'm psycho for seeing that NOT being withdrawn and NOT having a diagnosis is going to get him labelled "Just Bad" until he believes it and turns into a little thug around the time that the adolescent testosterone surge hits in 3 to 6 years????

He's worried that we'll get handed Risperdal and an IEP for the self-contained classroom. I get that. How can he be so blind as to see that, if we don't have this situation well in hand by the time we hit adolescence, middle school, and all the crap that goes with it, that's probably exactly where we're going to end up-- only by then, it will be the RIGHT course of action instead of the WRONG one.

We can, I have very reasonable hope, prevent that-- if we start doing something in the near future. If we, and the school, and maybe an intelligent therapist or two are all working together, out of the same playbook, on roughly the same page. The problem is that, in a good situation anyway, THAT IS THE DEFINITION OF INTERVENTION AND AN IEP. And there is NO WAY to get that without a diagnosis. And there is NO WAY to get there without braving the damn mental health system. I don't like it, but that's the way it is.

My common sense is telling me that, other than getting overrun by my anxiety and my tendency to want to hide like a frightened prey species, I am doing this right.

The teacher-- the very good, very eduated, very acquainted with her own ASD relative teacher who I feel 100% comfortable talking to at this point-- is telling me that I am doing this right.

My friends-- who actually have pretty good judgment-- are telling me I am doing this right. One of them is the most sensible and pragmatic person I know. Another one, for all she's a bit of a twit about her personal life, has six months of training as a 1:1 special needs aide and has, in a little less than a year, worked her way up to being the most-requested substitute aide in her school district. We have hours-long conversations about this, on a monthly basis, and I know she's smart, because she's one of the few people I have met with the brains to listen to me and take my experiences into consideration.

My experience with you folks here on WP is telling me I am, other than getting scared and being too hard on the kid trying to turn him into The Terrifed Unobtrusive Aspie I Was, doing this right.

Why is it so hard to get my wonderful, loving, involved, intelligent, sensible, highly educated, empathic, socially skillful husband to LISTEN TO WHAT I AM SAYING???? I'm not saying I have to get my way. If I wanted my way, I would jump in with both feet, go over his head, and do what I think is right. I have a long history of doing exactly that when I think I'm right enough and know what I'm doing enough that I need to just have my way, period end of story.
'
Why is it that, when he wants me to do something or see something or think about something, I'm perfectly smart and perfectly sane and perfectly capable...

...but when I need him to do something or see something or think about something, suddenly I'm a ret*d crazy woman, bordering on Munchausen by Proxy, who is trying to throw the kitchen sink at the situation simply because I don't already know exactly where to look, exactly who to ask, and exactly what to do, whose perceptions and opinions should be disregarded because she had a serious mental breakdown a few years ago?????

GAH!! !! !

Ergh. Another long, semi-coherent monologue. I don't blame him for not wanting to listen...

...but then, if I try to talk to him in short, concise bullet points, he yells that he needs more information.

Sorry for screeching at length.

I just feel like I'm living in The Yellow Wallpaper. http://en.wikipedia.org/wiki/The_Yellow_Wallpaper <---- Linky, for those of you who wonder what I mean and never felt any temptation to major in English.

Again-- because I remember feeling this way when my own situation started going from bad to worse. Only this time it's not MY LIFE at stake. It's MY KID.

BuyerBeware,

It sounds like your husband may be more flexible if he is willing to talk about K12. It sounds like as an engineer he might have a touch of undiagnosed AS too, and sometimes that leads to rigidity and failure to see what is going on. The fact that he accepts logic is a plus. Maybe you are right about just changing tactics. Maybe instead of directly saying x,y------------------>z, give him the info (x,y) and see if he will take the leap to z on his own and then feel like he owns it. It is tough. I am sorry.


I am not happy with how things are b/c I know we are in vacuum and that it does not easily lead to functionality. I don't want it to sound like I am bragging that I found The Way. I really haven't/ As you say cost-benefit analysis... I also live in an exurb away from anything helpful, and the people here are obvs NT and in addition to that have an exurban/rural culture I don't understand. It is what I am stuck with as the least crappy of crappy alternatives.

Oh, ASDMommyASDKid... God dear I'd like to crawl through the monitor and give you a hug.

Frankly, I think you probably have made a good start on finding the way for you. From your descriptions, you guys could probably use some time in The Wonderful Land of Aspergia to find your balance and lick your wounds (not necessarily in that order).

ASDKid is, what, a third- or fourth-grader?? So there's some experience of the world there already-- and also still enough time that you can spare some time for an immersion trip to Aspergia. And you're really smart, and you know the vacuum is a risk. So you probably won't fall into it, at least not permanently.

Me-- well, I know me. I'm finding myself fantasizing about running off into the vacuum and never looking back, and I'm prone enough to inertia to do it, too. That's something I got from Saint Alan-- I don't think amotivational syndrome from too much pot smoking was the only reason he was quite inert.

I think he is coming around a little bit-- we ended up shouting at each other for an hour again this morning, but we got a chance to talk while he was waiting for his partner to show up to a site visit at lunch and we do, FINALLY, have the mutual realization that we're having, in large part, an argument of misunderstanding. He's so busy hedging against what he's afraid will happen if we ask for help that what he ends up communicating is "Do nothing," and because I don't already know exactly what to do he hears me saying, "Throw the kitchen sink at it and see what sticks." I'm so worried about what could happen-- at either extreme, since I've been to both-- that I end up communicating a jumbled mess that sounds like BOTH extremes in an attempt to say, "There is going to be some trial and error, but we have to look for a middle path."

I'm terrified because I KNOW I haven't won the fight against my own anxiety and self-hate and Broken Neurotypical Syndrome-- I'm winning, but it's not over. I KNOW that's going to be a handicap, but I can't wait another year or two for that fight to be over before dealing with this issue. If I wait that long, Young Mister Edison will have comorbids, or resulting issues, or whatever you want to call 'ems, out the wazoo. We're going to be ahead to take this walk now, even though I'm still limping, because he's SIX and circumstances haven't injured him badly yet and it's still relatively uncomplicated.

I'm still among the walking wounded, but more "walking" than "wounded" now. I can't do this alone, but I can be part of making sure it gets done. Two years ago, I would have been insensible, incapable of helping, only able to make matters worse. A year ago, it was back and forth and touch and go. Hence the semi-miserable year Kindergarten was, between doing too little and doing too much, too wrong and only occasionally hitting the right balance in the bouncing between the extremes (and not knowing it when we hit it).

I'm strong enough now to find my footing and (I think) to know it, but not strong enough to hold it if pushed (ASDMommyASDKid, I think you can relate to this-- I was caught by your description of yourself as, like me, dangerously compliant). So we HAVE to do it together. It's the only way we're going to have a prayer of finding the right path for Young Mister Edison.

We HAVE to do it together. But how can we do that if communication between us is this difficult???? We can't turn our domicile into a bickering hellpit. He can't take it, I can't take it, and none of the kids need it either.

It's-- I remember, dimly, a time in childhood when I had loquacious and outgoing tendencies. I think I must have been, organically, that way-- God knows I talk my friends' ears off, and can certainly type my way to carpal tunnel syndrome "talking" to people online. Saint Alan was talkative and outgoing-- he could rub people the wrong way, but he was the BS champion of the local gas station.

Young Mister Edison is talkative and outgoing too-- also sweet and trusting and eager (over-eager) to help. I think we must be a family of talkative, outgoing Aspies...

...and it just got crushed out of me in the interest of survival. To be perfectly frank, I think Asperger's runs on both sides of my family. On my dad's side, they embrace it and become talkative, outgoing, idiosyncratic folks with a tendency to make buffoons of themselves. On my mom's side, they reject it and become withdrawn, uptight, Fine Upstanding People-type folks with a tendency to become mildly emotionally abusive and have nervous breakdowns.

Of those paths, the latter leads to greater social success-- acquaintances, employment, how you're thought of and treated in the community. But I think the former leads to greater happiness and well-being, better mental health, and better overall personal functioning. If I have to choose one, just one, and walk down it, I think I'll take the path of my dad's side.

But-- I don't think we have to choose from those two options. I think-- I KNOW-- there are other paths. Middle paths, and paths that go in entirely different directions. There's the Adam Lanza Path, probably somewhere to the right of my mom's side of the family. There's the Peanut Butter Brat Path, somewhere to the left of my dad's side. It's important to avoid those-- I think I've glimpsed them, and they're UGLY. There's the John Elder Robison Path-- it looks a lot like my dad's side's path, but it goes in a somewhat different direction. That one sounds good-- only let's skip the run-ins with the law and misunderstandings involving high explosives.

For want of better terminology, we need to find the Little Bit of Column A, Little Bit of Column B Path. And make sure they're the right bits.

I've already made the mistake of trying to crush it out of Young Mister Edison. I meant well, but it was a stupid f*****g thing to do, and I'm STILL fighting it. Damage has been done, but it's not critical (yet). It's not too late to get him on the right path-- the path where he learns to cope and fit in without learning to hate himself-- while he's still a sweet, bright, innocent sunbeam of a happy little Aspie (or Adder or Spud or whatever the heck he is, even if I'm pretty sure he's an Aspie).

Thanks BuyerBeware,

Communication between Aspies and related conditions is tough. I think you guys will make it there, though. We have communication problems all the time, and everything seems to work better when less emotion is involved that clouds the thinking. It is too hard for those underdeveloped brain cells to work under emotions. You have to kind of aim for that nexus where everyone that needs to participate in a conversation is calm and so people don't get their back up when asking questions, and so the questions are asked so the answers can be rephrased for clarity.

The stakes are so high when it comes to your child's future that this is a harder thing than it maybe sounds like. We have an ASD/ADD mix in our household. Me=ASD, husband=ADD/ASD lite and ASDKid = ASD/(and probably ADHD lite) so communication issues abound.

You can work it out. I am sure you can.

You know, over the past year I've come to seriously wonder if Hubby doesn't have just a touch of ADHD. My MIL too, for that matter. Probably subclinical, but I seriously wonder.

Eh-- not much they'd do about it at this juncture. He'd get the same schtick I get-- "What do you want us to do?? You are doing so well! How did you achieve this outcome?? Blahblahblah..." Hey, maybe when we're old and gray we'll take up a second career as husband-and-wife lab rats, CBT guinea pigs, and writers of inspirational books. Might explain why he's always wanting to be simultaneously watching TV and playing video games and why he can't function at the office without his daily pot of coffee, though.

That's an interesting insight. Thank you-- I'm sure it's going to be helpful, though I'm just not sure how yet.

Forgot to mention (and have meant to)-- ASDMommyASDKid has to be one of my favorite screen names ever. It's so... frank, and logical. Makes me smile.

You ladies are the best. You're right up there with the ladies over on SurvivalistBoards.

Every time I get thinking I might, finally, be calm enough and knowledgable enough to actually give you all some useful advice, I get a wake-up call...

You are all awesome people. I'm actually starting to feel like we might be able to get a grip on this situation, and y'all get a big slice of the credit. Thank you all soooooooo much.

Sat down with my therapist today and ran the ADOS on the kid.

Yeah-- I don't have the scoring rubric handy, but I'd say a borderline score on the page that assesses severity, and then the rest is erratic. He checks all the boxes in some areas, none of them in others, just a few in the rest. That's pretty much mild Asperger's in a nutshell.

I'm SCARED. I'm scared for him to go to school without the protection a diagnosis and IEP can afford, and I want him to have access to the teaching that having one could get him. I'm also scared for him to have the label. How many times is he going to be branded and deprived of opportunities simply because he is ONE OF "THEM"?? How many times is he going to be stereotyped, written off, and dismissed?? How many people are going to be stupid enough to see A Disease, and ignore the little boy in front of them??

I understand my husband's reluctance. I wonder if I'm risking my child's life reaching for a star-- putting him in a lot more danger in the naive hope that, with help, he can have a better outcome than I did.

I think back to the comments made after Sandy Hook about how we should "round them all up and put them down." I think back to Hitler's radio campaign. I think back to the all-too-much I know about the American eugenics movement. Am I sacrificing his future civil rights?? Putting his personhood up on the block?? One day putting his life in danger, because I have hope that, if everything aligns right, he could one day have a better road??

Please help me. I can't sleep. I'm TERRIFIED. I don't know what to do.

I should not be sitting here feeling miserable and hopeless and defeated. JEEZUS!! It's just friggin' Asperger's, for crying out loud!! ! It's not even severe Asperger's!! !! It's just a very borderline, very high-functioning kid!! !! Why in the hell am I doing this??? It's ridiculous!! I have to get rid of this attitude, or he's not going to be OK. The idiots will eat him for breakfast if I sit here all scared and hopeless and defeated...

BuyerBeware,

I have been sleepy as of late, so I apologize for my reading comprehension lapses. Is he borderline diagnosed or borderline not? (I was unclear and I don't know with the new DSM 5 what a borderline Aspie counts as these days.) Does the therapist believe he would get the help he needs in school with these results or does he fall just under the line?

I totally get worrying about the label given the mobs with pitchforks whenever something happens that involves ASD people. I don't know how you weigh the short term benefit (assuming he is -severe- enough to get any help) vs the long run risk. I have been toddling along assuming we have evolved past anything terribly drastic, but you can't be sure. To take John Maynard Keynes completely out of context, "In the long run we are all dead," so I don't know. I guess you have to weight the present more heavily and get him what he needs now, if you can.

I wish I could post something more helpful, but this is what I've got right now.

Right now, he's borderline undiagnosed. I've only ever made one attempt to get him assessed, and that guy was a quack and a fool-- one of those people that spend 20 minutes with you, 20 minutes with your kid, and an hour having you fill out forms for the insurance, and then feel qualified to make a pronouncement on the course of their entire life.

Should have taken my kids and left when he expressed surprise that I'd driven us to the appointment myself.

Knowing that attitude is out there, that it's still frankly common (this idiot came recommended by my therapist, who does not give me that crap and who I trust), well...

...don't feel bad about not having any more for me. I don't have any more, either. I'm trying to weigh it in the present-- and I'm really not sure how to read the scale. No one seems to be.

It's not your comprehension issues, either. It's my communication issues. Those are some long and rambling posts.

Well, we had a ONE HOUR phone conference with his teacher last night (on her own time-- and she has three boys of her own-- I swear, this woman is a SUPERHERO).

She spent about 15 minutes gushing about Young Mister Edison's intelligence (appreciated-- all last year's teacher could talk about was his deficits) and what a wonderful child he is and how hard he tries (nice to have the effort count for something).

And we spent the next 45 minutes discussing behavior. Which I've gone over here, in autistic detail. He talks too much, he can't tolerate noise, he cries at anything that even vaguely resembles criticism, he misreads others' behavior as rejection when it's not. He's impulsive, and obsessive about imperfections in his work or stories he wants to tell. District policy does not allow her to openly recommend having him evaluated, but off the record and once we brought it up, she will say that it wouldn't be a bad idea.

Hubby is now on board with this idea.

So I guess the next step is to have the teacher write out a list of observed behaviors, with examples and frequency, for me to take to his physical in two weeks, so I can badger the pediatrician (who sees him for all of 15 minutes two or three times a year, and no matter what anyone tells me isn't going to pick up mild ANYTHING unless it's mild strep throat (and shouldn't be expected to) for a referral for neuropsych testing (which I should be able to have done by the end of February if I'm really on the ball with this).

I called the pediatric neuropsych department and talked to two different people (the second of which actually knew her ASD from her elbow). They will actually spend a large amount of time with the kid, will actually confer with adults who spend time with him (mom, dad, and teachers), and will actually administer the ADOS/AQ/Other One (can't remember the acronym-- hey, Asperger's can't fix everything ).

You know-- as opposed to spending 20 minutes playing with him and his siblings, and then acting like they obviously MUST know better than mere parents.

So I guess the next step is satisfying the insurance requirements, and wrangling with them.

God I hope I am doing the right thing.

It sounds like good news, to me. Hang in there.

So this morning, the kids don't want to get up (we had a big 4-day weekend, complete with travel and cousins and a screwed-up bedtime thanks to falling asleep in the van on the way home).

So I drag them out of bed, drop their clean clothes on the couch, and head for the kitchen to make breakfast.

While I'm dumping hot water over the godforsaken instant oatmeal, Mister Edison decides it would be entertaining to wave his hands in Big Sister's face.

She screams, "He tried to hit me!!"

So-- I didn't have any siblings. All my friends came from screwed-up families. My cousins might not have had a truly screwed-up family, but a demanding husband with severe PTSD and a survivalist lifestyle didn't exactly leave my aunt time and energy to hover over the kids.

Is this an early sign of violence?? Or am I catastrophizing when I see this as evidence that the kid needs to be kept sedated before he ends up on Death Row??

You are catastrophizing. It's OK, I know because I do it all the time. Then I take vigilante measures to fix the problem, which backfire even further.

I would not make a big deal out of the first offence. Keep an eye out for anything similar and only then have a discussion with him about Space Invaders (some good social stories books touch on the topic of invading people's spaces). I'm sure if someone did that to him, he'd be up in arms! I know because my son does this All. The. Time.

I have a younger sibling we were at each others throats (not quite literally) quite a bit as children, and neither of us ever was close to ending up in prison and are not violent people.

Watch it, of course, but I don't think it warrants reading too much into it from your description.