One more quarter left... can I make it?

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I say one more quarter... but that makes it sound so simple.

I've been here before, but I don't post often, so here's the back story: I'm a mom with undiagnosed (and therefore still in question) AS... or comparable traits, anyhow. I am married and have a 14-year-old daughter, and 10-year-old son, and a 5-year-old daughter, in schools in Orange County, California. All have had IEPs drawn up. Yes, even the kindergartner. Don't think that fact gives me peaceful and relaxing sleep. No, indeed...

So, by kid, this is what's what... in reverse order, because it seems to make more sense that way:

The baby started last Fall in kindergarten. She was terrified the first day, but I walked with her until the late group came in and she went to class when they did. She seemed to improve after the first week but has since developed a pattern of growing upset when asked to change activities if she hasn't finished or doesn't like the new activity, or having a fit if things aren't just so. It's true, too; she was always the one to bottle things up until she blows her top, and has been know to say, "You're doing something wrong!" if you're not meeting her expectations. Sigh. We work on her resilience by letting her see that her pouting will not get her what she wants if the answer is no. In school, however, she is pressed to say what's wrong or to cooperate, which resulted in what they call eloping (weird name). She ran off. However, they don't think she has a disability, and the teacher has been working with us and the school on ways to help her adapt to school life. I'm optimistic, in her case... kind of... it's hard to get your hopes up after a while.

My son seemed the most desperate case, and some days, still... From kindergarten through the end of first grade, he was in a regular school, being managed very poorly indeed by school and parents alike. His kindergarten teacher was great, but she put up with way too much; he was far worse than his little sister has been. She'll walk out after class on her own power; he had to be cornered and carried. He has a school (not medical or outside) diagnosis of having traits of ADHD and Asperger's. Goodness knows, he's impulsive, even now, but after we transferred him to a more restrictive school program, much has improved. It just about killed me at the time, because who wants to do that? And it took months to feel better about it, but his first week of 2nd grade, he ran off every single day, and home schooling would only keep him isolated. He couldn't say why he ran off to any satisfaction. Something just drove his feet. To my relief, the ASPIRE class he's in does not just have some big bullies trained to hold the kids when they hit; it's an entire program and restraint is the worst case scenario. He's in 4th grade now and they've begun to mainstream him... he has high marks in all subjects, regular curriculum. He's still impulsive but can reason, and has been taught skills in his class to help him determine what is serious and what should be shrugged off, the ability to take ownership of his actions, and has felt more in control of himself, through that and just through growing older. We also have learned better how to deal with him, and how to teach him to handle things better. The program goes beyond elementary school, so what with one thing and another I hope he will reach adulthood with a mastery over his impulses.

The oldest started school in another district and seemed to be doing fine, but as she moved up through 3rd grade, was growing more and more resistant of doing her homework. The teachers gave her top marks notwithstanding. We believe this was because she had the edge; a large number of her fellow students did not have strong skills in English. Like it or not, a lot of schools grade you against other students, not your own previous scores. We figured the lowered demands were the reason that she struggled after we moved to another district and got her and her brother placed into a school with a higher rating... I realize now that rating was based on standardized testing and I really wonder how much it's worth, therefore. Anyway, the move was reason enough for her to be a mess... she was always a very friendly child. Was. Had we not been consumed by the problems her brother had in kindergarten, which escalated, we could have helped her. I'll hate myself for that... maybe forever. The end result is, however, that through years of being nagged to work harder, having her executive function issues overlooked, and being given teachers, for 4th and 5th grades at least, who were the sort who treat a child like a monster if they don't live up to the teacher's standard of a good learner... she has developed a resistant and angry attitude toward school and teachers. She still tries, though, but has little patience for the school approach, one which we as parents too often buy into, of telling the child more is wanted no matter how much she does. She's bored, but moving her to more difficult classes isn't the solution. She's bored because she's not interested. Makes sense to me. And her attitude issues can easily be chalked down to her age and to what I understand is a common scenario for overlooked students with ADD... very typical for girls with consistent traits. She draws in class or looks at books, but even when she buckles down and tries, she struggles. As a rule, she scores well on tests, but most classes give more points for homework and thus she has to scramble just to get Ds... and I usually have to help her get her papers together to manage that.

She loses papers and assignments, forgets to do them, or puts them off and THEN forgets to do them, finishes them and forgets to hand them in, finishes them and is too intimidated to hand them in, after all, they're late, and as far as I can tell, the teachers make no time for late assignments to be handed in... One teacher doesn't believe she could be shy or intimidated (have you noticed how often intimidating people are oblivious or act oblivious to how much they scare others, and conclude you're the one with the problem?), or have stage fright on oral reports, because she wears weird clothes. He figures she's trying to get attention, and to him that means she can't be shy or nervous. On the contrary, she's passive-aggressive. This dude has given her more detentions than anyone else... lateness, wearing a hood on campus (?), drawing in class, defiance (she was having trouble thinking of a fact to trade with a partner for an assignment, the teacher gave three warnings a couple of minutes apart, but didn't bother to ask if she was having trouble. She was sent to the office where she ended up missing the following class while they played musical counselors).

We've been very frustrated with her refusal to work with us... but more so with the school. She has an IEP that identifies her as having ADD and AS traits, specifically listing executive function issues. She has no electives of her choice because she's in an Algebra support lab and a study skills class. She's supposed to have extra time to work and to hand in assignments. Her caseworker is supposed to help her get her work together and handed in. They agreed at the meeting to give us an idea when an assignment is due, and to try and reduce her workload due to her specific issues. They almost never contact us. They did not reduce her workload. She has more time to hand things in but no opportunity. Her caseworker has stopped returning my e-mails, since agreeing to try and arrange a meeting with the psych so that I can ask, for the nth time, whether they will do a functional behavioral assessment as our outside psych suggested (hey, wonder why she draws in class, or why she can't get papers handed in, if this IEP is so wonderful?). She did not respond to a follow-up e-mail asking whether it would be more convenient for me to call the psych myself (after she didn't get back to me), and whether it would be appropriate to have my kid just leave her work in the teacher's box at the office since she can't seem to get it handed in. We have now concluded that there's no time for any assessment, and that they were counting on that.

Middle school is nuts enough without all this. The social science teacher alone is frustrating... a bright man, but intent on telling American History in the grimmest possible light. He's determined to expose and illuminate every dark chapter, every oppression, every race related issue. He started by telling what the white man did to the natives and hasn't stopped... an uncomfortable way for my white, blonde daughter to learn, among the brown-haired students filling all the other seats. I tried to tell her that they most likely didn't blame her for any of it (we're just talking about brown hair, here, and let's face it, we're all from somewhere else more or less), but it still bothers her. She got half points on an interview with a lady who emigrated here because the lady herself didn't offer a detailed explanation of why she wanted to come here or what troubles she met here. The woman in question has lupus and kidney problems and was more focused on that over the years than the race-related issues he was after. But she did explain... briefly. "We came because we wanted to have a better life. Everybody wanted to come." And he didn't think it was enough and knocked off half the points. Jerk. But I digress...

They seem to care more about teaching kids to keep up with endless worksheets than with teaching them the material. I do want my kids to learn to work. I want them to learn to deal with the life reality of having to do things they'd rather not sometimes. I'd love them to be more organized than I am... I just don't know that I think the endless worksheets should affect the score more than the absorption of the material. And the caseworker should do her job instead of talking like she cares and then ignoring parental e-mails.

So that's my vent. If my kid wasn't so blase about it right up until she realizes the waters are closing over her head (at which point she freezes up, lovely) and was trying hard and still failing, I'd go in guns blazing, filing a complaint about them violating the IEP (in theory, if they do their part and she does hers, she should at least pass, though with her sometimes ridiculously high scores, it should be more) and dropping communications with the parents, saying that they'll help a child who has trouble assessing time, remembering things, and keeping track of assignments, and instead giving her detentions, causing her to miss class time, and alienating her... but I was sorta counting on getting that assessment to give me an idea how much of it is her and how much is them. I only have her word for things... and she's 14. She thinks she's trying, but she goes through cycles of thinking she's fine, finding out she's not fine, and giving up because it'll never be good enough. She scarcely remembers what it's like to do well at anything anymore. I'm just about the only person who appreciates the things she's learned independently... art, writing, Japanese, the things they would have her push aside for subjects she doesn't see as meaningful.

This is one of those uber-long gripes. If you got through it, does anyone have any insight on the IEP issue? I'm waffling on it terribly. It makes me angry, and that clouds judgment. I'm sure they'll say they've done their part, barely fulfilling the requirements, but just enough that we'd have no case. I could file a complaint, but it hardly seems worth it, and I can't make myself believe it would do a bit of good. If she manages to pass, she's a couple of months away from high school... where I fully expect she will struggle the same way. The middle school wants to be rid of us, and we want to be rid of them. But still it seems like it shouldn't just be dropped. They're not doing their part, and the caseworker dropped the ball. We've considered sending one more e-mail to her, CCed to the principal, mentioning her offer to set up the appointment and failure to respond to subsequent e-mails, and adding our disappointment that they allowed her to be given detention for being unable to think of a fact and then being too distressed to explain to the teacher without shouting. I thought that was rather mature, to refuse to speak when she felt she could not be civil. And also venting our frustration at the school's bewildering refusal to conduct a functional behavioral assessment. We were told it was more suitable for grade school kids. Funny, two other psychs have told me otherwise.

And I'm just so tired. I'm getting nowhere. And it's been like this her whole life... she has quiet little issues that make big problems, and everyone blames her personality, or attitude. And even that, at it's worst, should not, can not be the whole problem. They want to make it that, but it's not right. But I'm so tired. If I just let her fail, she'll shut down. I don't think I could compel her to go to 8th grade a second time. I'm not together enough to homeschool.

Well, I'm starting to ramble. I have to see if I can possibly get to sleep now. Trouble is, I have to wake up again.

You may have to find out who the appropriate person would be to schedule and ARD. Where we are, the title is Educational Diagnostician. Find out where she/he is officed (The district office probably) and send a formal written request including your concerns, a request for an ARD, a reqest for an FB analysis and I would also include what you think would be positive changes. You might also ask them the local contact in the state regulatory agency that handles issues for your school district, so they know you are serious. If you call an ARD, thay have to give you one. Do so in writing, if you have to, and that means they will have to follow Federal and State procedures.

I am sure someone else will post with more specific advice, but I do know that if you call an ARD meeting, they have to give you one.

I didnt make it thru the whole post, and is sounds like your kids have had their share of issues with school. I just wanted to add as a homeschooling family, that my son is far from isolated. In fact, because of homeschooling, he has freinds! MANY freinds. He is out and about in the community and homeschool groups, programs, activities, etc.... daily. We are rearely home, he has more real world socialization time then he would ever have if he was in school 7 hours a day.

Just had to throw that out there, you never know if someone on the homeschool fence is reading, as there are a lot of misconceptions out there about homeschooling. MOST of us who homeschool dont do so to isolate our kids...lol

I see at the end of your post that you say you arent together enough to homeschool, and maybe you are using the "isolated kids" excuse to feel better about not homeschooling. I understnad that homeschooling is a huge commitment, but who better to commit to?

Just know if you put your mind to it, as we tell our kids, you can do anything! How do your KIDS feel? Have you ever asked them about school? What is so hard? WHat would make their lives better?

I feel for you and for your kids, sounds like school is a terrible struggle for them, and it comes home to you. I always said if I sent my son to school I would have more headaches and issues, and your post has reinforced my belief!

Good luck to you and your kids...one quarter left!

What's an ARD? I get the idea, but not the acronym.

I'm not using the isolation as an excuse (that wasn't exactly a kind way of putting it, by the way. What is best for one does not automatically become best for all). Most people don't feel they need an excuse not to homeschool. They need sufficient reason to do it. I would have to feel my kids would get a better education, as well as sufficient socialization. I tend to be anti-social and have executive functions issues like my daughter as well as AS traits. I think I have good reason to feel I might not be effective. Things would have to be adapted in order to compensate for our cumulative disorganization, and that would cost money, which means footing the bill ourselves, or getting the school to spring for it... not easy.

Also, the current mindset of my oldest is such that homeschooling would not only mean isolation from her current friends, who she sees only in school for whatever reason (I'd take her to the mall or whatever, but she never arranges any activities with them outside of school), but a kind of defeat... "I tried public school and couldn't cut it so I had to be homeschooled." Do I think that's an accurate view of it? Of course not... but she resists help with schoolwork at least partially because it would mean she couldn't manage on her own. Thus, the change could be tied in with her self-esteem.

As for my son, he was sometimes violent back we he entered the program, and I at that time did not have the skills to teach him what they could. Also, at that time I had a toddler at home... I had to think of her safety when he had his tantrums. So of course you can see how that complicated things... suppose I'd kept him home? I was unable to take him anywhere back then as it was because he was a runner and I had a smaller child, and if I was busy stopping him from hitting me at home, she'd have been into everything until he stopped. So I summed it up as isolation because he was already alienated from his old class due to his impulsive actions, and had no friends, but also because I couldn't take him to the homeschool activities the way he was at that time. We have a great support school for homeschooling, but I think no one would relish the introduction of a violent child into any of the activities.

ARD might be localized lingo, sorry. It is Admission, Review, Dismissal, and it is just what they call an IEP meeting where I am. Use whatever terminology is applicable for your state. Wrightslaw will probably have a ton of articles to review on what your rights are for your state.

http://www.wrightslaw.com/blog/?p=120

This could get you started a little bit, but you will need to dig deeper for your state's rules.

Sorry, I also didn't get through the whole post - but it seems to me if your daughter isn't succeeding, her IEP should be reviewed. In other words, if they're implementing the IEP to the point that you don't think you can complain about how well the school is doing, maybe the IEP itself needs to be changed.

You can have specifics written into the IEP - for instance, not just that the caseworker will contact you, but how often and in what matter - e.g. "Caseworker will send an email on Mondays detailing x y and z." Once those things don't happen, you have a case (it does strike me that you have a case right now; if the caseworker is supposed to keep in contact with you and they aren't.)

The question is, if you did have a case - what would you do? You need to think of what you'd ask for. Different school? Different caseworker? Different teachers? Everything stays the same but they are warned that they are now accountable?

It doesn't sound like they're taking you seriously right now; I'd do something. I always recommend that parents get an advocate to attend their IEP meetings; we finally did and we were taken seriously for the first time. It's too hard to manage your own stuff and your kids' stuff and your feelings about meetings, having an outside opinion can only help.

This article might help you, it shocked me how much of this $#%& we've heard at our own school: http://blog.friendshipcircle.org/2012/0 ... p-meeting/

You've really got your hands full!

Have you looked into charter schools or hybrid homeschools in your area? Some of the hybrids even have the option of attending full time! There's one here where the curriculum is entirely computer based. The kids can work from home or go to the school site. Others do project based learning.

Have you considered or tried medication for ADD/ADHD?

I also think you need an advocate. What is their current transition plan for high school?

I do need an advocate, because I go to every meeting faced with the same question... what do I expect them to do about it? I expect diddly because that's what I figure they'll offer. I don't know what's available, especially when my kid resents their efforts and so does resist... she wants to do everything on her own timeline. I understand that desire, but I also know she's not likely to get that once she graduates. I do know that a woman who claims to be the caseworker can answer an e-mail.

I've looked into alternative schooling but the big problem with that is that my girl has friends at this one and that's the deal breaker for her. Take her away from her friends, and you can forget about getting any cooperation. She doesn't have a huge number of them and she's already switched schools once, though it was years ago... it was traumatic and she won't do well repeating it. Which is a shame, because I'm pretty sure their transition plan for high school is to select classes and then send the paperwork over. They've mentioned the support staff but it seems pretty sparse. I don't think, after all their labeling, that they believe she has any issues greater than her attitude. Some days, they're right. Doesn't mean they get to quit, though. I don't get to. It doesn't fit the definition of support.

No, I haven't considered medication for ADD. I figure when they can show me a chemical test that establishes the presence of a disorder, then I let them provide me a chemical solution. When I see the number of syndromes and disorders that list almost exactly the same symptoms, it makes me very wary of the science. A bunch of people have noticed some of us don't think like other people. A bunch more are of the opinion that it's causing everyone problems and that we need to change to fit into society better. And the majority rules. Besides, there's going to be a time in just about every life when meds aren't available. I'd rather see them learn to cope without, and be prepared. I obviously have, as a neuro-Atypical person, some personal issues with the idea of being expected to drug myself to make life easier... but the idea of helping my kids be self-reliant even if they can't get medication... that's different. Especially the boy... I had to at least see if he was capable of reigning in his impulses, because someday puberty's coming and... well, y'know, who needs another man on the landscape who can't control himself? Not good.

Another angry moment... Our pediatrician, who is no longer consulted about psychological issues (I was only asking for a referral) heard my description of the problems the older two were having and promptly offered to write a prescription. No Neuropsychologist, no medical assessment except that of a pediatrician, and he wants to medicate. That ticked me off. Even if you've tried the meds and found them to have worked well, why would you just prescribe them without a full diagnosis? So, like I said, he fixes ear infection and stuff... He's good at those.

Right; I think you've answered your own question: next question is do you know how to find an advocate? Most autism programs have one on staff or will offer to send one of their therapists. You can also opt for a lawyer. I am guessing that not only can the school do more, there are specific steps and actions they should be taking, and an advocate will know them.

As for the meds - we don't use them and I've always said that they are there if we exhaust all our other options, but not until that's happened for us. However, I've heard from many, many parents that the ADHD meds (which don't work for every kid, mind you) can be very helpful. Kids are much more able to focus - one friend of mine said it was like "getting her kid back." They are stimulants, and work in a similar way to the way caffeine does - I know I need caffeine to keep my head straight during the day. The other good news about them is that if they don't work, (they are decidedly not for every kid) you know quickly, and they don't stay in your child's system for more than a day or so. That being said, there are side effects to consider - loss of appetite, difficulty getting to sleep, difficulty waking up are some that I've heard. I was pretty hard-core anti-meds (and, of course, our school suggested them immediately on the first eval) but my attitude towards them has softened after hearing many real success stories.

While I have no personal experience with meds, we did start DS on coffee in the morning for this reason. He doesn't have it regularly and I don't think he drinks enough of it to get much benefit, so I can't say if it helps or not - but I figure if a stimulant will help, why not one that doesn't require the pharmacy?

Well, that doesn't make me less opposed to meds. I also agree that if they're needed, they're needed, and if they help, there you go... and yet hearing that they're stimulants does nothing to improve my view of them personally. I don't drink coffee myself; we don't have any and won't be getting any. We're all suckers for chocolate, however...

But I've already reached a point where I feel like I've gotten my son back. He used to fly into a rage when he couldn't get things his way and now he talks, reasons, and helps out. It's really amazing. He's matured by a few years naturally, plus he's learned he has control over his own actions.

I think what this tells you, though, is not that no one needs meds, because that's a simplistic conclusion (I was just griping yesterday about the people who say, "You need what I got because your symptoms are the same!" Very annoying). There are other kids in the same program as he is, some older, who still have issues keeping them from being mainstreamed... it's not a cure-all. I think what my son represents is that section of kids who get stigmatized as "bad" who do have some problems, yes, but who really have just not received teaching specific to how they see things, who maybe don't know how to express themselves or understand what people want from them, AS or otherwise, then make choices we know are bad... but they don't, not fully. They get yelled at, seemingly without provocation, they get defensive, the behavior escalates... unless the underlying cause(s) are identified and addressed, you can end up with a kid who's just a little less mature than his peers or who is hyper-sensitive or who processes slowly being treated like an out-of-control animal or a delinquent just from the chain reaction to a couple of annoying behaviors.

I've seen too much of this. I've been subject to it first hand. The adult tendency to pounce on the behavior, to leap to conclusions, to refuse to consider they make not have correctly interpreted another person's actions, and the very common habit adults have of not treating a child as though he's capable of making any choices for himself, or that there's no excuse for what they did. On the contrary, there are many, many excuses... better called reasons, provided they're true. And too many adults who take everything personally... not really being the adults themselves. No wonder the kid panics.

But I've gone on a rant here... he's doing well. It's the girls that have me bone-weary these days. That's a full 180 rotation from how it was four years ago, folks. Well, pretty close.

And yeah, we are considering a lawyer. I know there are some firms that specialize, I just have to check around.

The part of your daughter's brain that handles organization simply isn't mature enough to handle the paper-pushing demands of middle and high school, even though she is capable of mastering the subject material. That has to be incredibly discouraging for her.

They way I see it, there are 3 major ways to help a kid with these kinds of difficulties:

1) Switch to a school that is more structured and set up better for a kid with ADHD.
2) Teachers who are willing and able to provide the supports and accomodations she needs (reminders to stay on-task, checking assignment notebooks, reduced homework, allowing late homework, etc.)
3) Medication, and/or parents or ADHD coaches taking on the bulk of the burden of ensuring homework is done and turned in (perhaps even scanning it and emailing it directly to the teacher)

You've got good reasons for not wanting to switch schools -- having friends in place is huge at this age, and if she's got any AS traits in addition to the ADD it might be very hard to find new ones.

You can fight for better accomodations in her IEP, but if the teachers don't buy in, you'll be spending a lot of energy fighting to get the plan implemented. It doesn't sound like the folks you're dealing with are very proactive.

The book Smart But Scattered has a lot of great strategies for teaching organization and focus. Personally, I believe it is best to use that in conjunction with medication to act as a "brace" until the executive function matures, but I respect your differing opinion.

Hang in there -- summer's coming soon!

Thanks, it looks like a good book.

I don't know what you mean by proactive, but they certainly aren't much help.