Back off usual

I spent some time reviewing this blog the other day, and it reminded me that we started out talking about autism. A couple of years ago, the topic was a huge part of our daily lives, with all the therapies and educational issues and…so much. So many questions. So many answers, not many of which were applicable.

We’d discontinued our last services back in April, and even that had only been for a couple of hours of behavioral consultant a week, just someone keeping us abreast of new exercises to spur Little Miss on in her language development. Her ADD meds have both helped her conversation, her involvement in class, and we’re even starting to see flashes of intuitive and logical deduction. Hurrah.

Ditto Boy has grown away from his brother, so the name may no longer be appropriate; more likely would be Dr. Doo-Be-Do, because his ADD drives him to be constantly singing half under his breath “doo-doo-doo-doo0-doo-doo…” and so on for 20 minutes at a time. Drives me nuts. Keeps him calm. So be it. He’s pursuing some auditory processing therapy at the hospital, but that’s about it. The girls still fight over him. It’s all good.

The first two weeks of school seemed to go swimmingly. Everyone had what they needed to start, new shoes, new teachers, and smiles all around. We should have known doom was about to descend.

A week ago Friday we finally get a call from the new eighth-grade autistic itinerant support teacher. The Captain is totally acting out. Meltdowns. Disgusting body odor. Disgusting body noises and hygiene. Eating boogers, for heaven’s sake. Not doing his class work. Not doing his homework. Disturbing the conduct of every single class. Not only are they posting him the aide we specifically denied in his IEP, now they want us to get him a TSS full time AND take him for a psych eval. They’re throwing around dozens of acronyms–ADD, HD, ODD, you name it.


Every day he’s come home telling us he had a great day.


Of course, the first thing we did was address it with him and go back to the same routine that we’ve done since third grade: the natural consequences of your behavior are since you are distracted from what’s required of you by tv, movies, books, Wii, etc., then you will not have these things. You can earn them back into your life by controlling your behavior. Because we’ve seen you do it. We know you can. You are a big boy and you do not need a babysitter within smacking distance all day during your school day. (And you sure won’t have one, when you graduate and have to get a job in 4 years). All the time, it feels like we’re the ones being punished.

So back to the autism/Asperger’s grind.  Managed to get him the psych eval and they’re starting him on ADD meds too (hopefully without the head-jerking tics this time) hoping to get him back on task. So I’m the only one not on speed. At my age, I’m slowing down enough that hopefully we’ll all meet in the middle.

Let’s hope that quick action has derailed the misbehavior train and we can move ahead. But there were several months where, besides a few usual adjustments for sensory issues, etc., we didn’t even have to think about the word autism. Not a cure, mind you, but an adjustment to accept the children as they are, which on the whole, isn’t thoroughly different from the variations of the neurotypical child population. There are many shades in a rainbow, and aquamarine and cranberry aren’t any less valuable than blue and red–and might just be more interesting in the long run.

Screaming in a crowd, and no one hears

For a small community, ours has a great autism support program in the elementary schools, spearheaded by a psychologist who has held this issue near and dear to her heart for 10 years. We also have an active autism support group for parents, and a dozen wraparound agencies to service the autism population.

As these students have aged out of the elementary grades and into secondary, there has been less preparation and cooperation, and the junior/senior high autism students have been a little shortchanged. The special ed PTB called a meeting to discuss how to solve the problem, and got an earful.

Parents were unhappy because they didn’t get modifications, they didn’t get aides, they didn’t like the aides they got, they didn’t get extra parent education… in short, they came for a great big “Gimme.”

At the same time, my husband and I are sitting and listening, extremely unhappy about the year that the Captain has had–but for a very different reason.  They gave him too much. They enabled every one of his bad behaviors by supporting the hell out of him. After we specifically asked and begged and put in his IEP that they not do it.

We had several meetings with the teachers during the year and re-emphasized that we didn’t want him to be propped up, that our therapists had agreed that natural consequences was the only method of learning that worked. They promptly forgot.  At the IEP meeting we had today, they acted like that was a brand-new idea.

I went carefully through our points, that we did NOT want him to be artificially supported, that we wanted him to be held to the standard of a regular student, that we expected that he might fail.  But the Captain has gotten to the point (as evidenced by even his therapist bailing) that he is not motivated by anything except self-interest. Therefore, it logically follows that in order to change the bad behaviors, we have to make it distasteful, nay, HORRID, to persevere with them.

So next year we now have it in the IEP that he rides the regular bus instead of a special van. Since it’s likely he won’t drive for some time, he’ll need to know how to maneuver around public transportation.

He gets no aide. He has to learn that he can’t disrupt class 15-25 times per day  (that’s WITH an aide) based on his desire to do what he wants, when he wants. Get a drink. Get a book. Do his homework instead of listening to the teacher. Go to the teacher’s desk during work time to have a completely off-topic conversation so he can avoid what he’s supposed to be doing. Tell the teacher he thinks there’s too much homework. Blurt out answers instead of following teacher protocol. No more.  Anything but a minor violation will now be met with a trip to the principal’s office for a talking-to, not the autism support teacher’s room for a hug and a snack.

And finally, we are invited to go at the beginning of the year and give our speech to the teachers once more about how we don’t want them to bend rules for him.  His future boss isn’t going to. If he’s lucky enough to focus on college, professors won’t give him breaks like this. If he gets married (not even thinking about that yet), his spouse will expect him to be responsible. Let’s start now, hmm? Then maybe by the time he gets out of high school…  *sigh*

But the one thing that seems universal is that the school and the other parents look at us like we’re from Mars.  Because we want him to learn to stand on his own. Because he can. He can do the work, we’ve seen it.  He can regulate himself because he does it at home, where we won’t let him pull that kind of snow job. He doesn’t need the handouts.

And somehow in the midst of all this “support,” we are terribly alone.

IEPs for U and ME

Is it spring again already?! Man.  Either someone’s speeding up the clock or I’m getting old WAY too fast…

We got the call for Little Miss’s Individual Education Program (IEP) meeting, and had that meeting this past week. No big surprises academically, as we have slowly seen that her fourth-grade work is falling farther and farther behind because of the wiring of her brain.

Actually the school psychologist we’ve been working with for six years (who knows Little Miss very well) came up with a very apt description of how that brain works:  when Little Miss is asked a question, the results are like a Google search. She comes up with everything she knows about that subject, all facts of equal weight, and she has to tell you all of them, and may actually get to the one that answers your question–with the level of language that she has, which is at a very practical, concrete second grade level. Not much there for analysis or conceptualizing yet. (Working on that.)

But the team brainstormed nicely, and we set up some possibilities for pre-teaching information, since her long term memory seems better than the short-term. We talked about doing extra work on the computer, especially in science, looking up images and reinforcing information visually.

The most ironic part–and we had to laugh, or else we would have had to hurt someone– was that the teacher sent as a representative of the fifth grade staff had also taught the Captain. We tried to point out that Little Miss and the Captain are very different in just about every way.

Two years ago, we wanted the Captain to do sixth grade in his home school instead of at the school with the autistic support program, hoping it would urge him to curb some of his odd behaviors before transitioning to junior high.  We had a meeting with the home school (which had originally asked the Captain to be removed TO the autistic support school mid-first grade), explaining that we thought it would be a good idea to let him experience the “general population,” if you would, in a smaller environment.

This particular fifth-grade teacher had come to that meeting with a written agenda and scared HELL out of the home school, talking about how hard the boy was to control and his outbursts and his meltdowns and on and on and on…. we were denied.

But at Little Miss’s IEP meeting, she smiled and reminisced about how much she’d liked the Captain, asked how he was doing, and said, “Oh, I’ll never forget him.”

After she left, I turned to the psychologist and said “Did we all go to the same  meeting?”  She kind of made a face and shook her head and we both laughed. In that poking a stick in your eye way.  Maybe the kids aren’t the only ones with issues.

Can’t WAIT till next year.

Take care of yourself, too

Parents, for the most part, put their children first, and then relegate themselves to second place. Or maybe third. Or maybe tenth. Or maybe 100th.

This is especially true of parents of children with autism and other developmental disorders. By the time you get the child’s school work together and arrange for the occupational therapy, and the TSS comes by and you make all the other doctor appointments, and teacher meetings, and team meetings, and IEP consults—heaven forbid you take time for the other children who might have a need or two! Significant others tend to slip down the list as well (mine included, poor thing!)

So often you’re last on your list.

But you know what? As Yeats said, things fall apart, if the center doesn’t hold. You need to take time for yourself, both for physical and mental health. Now a new online community called Wellsphere makes it easy–and healthy– for you to improve your life.

I’m pleased because Dr. Geoffrey Rutledge,one of the site’s founders, asked me to join their community as someone who blogs on autism issues. There, I was pleased to find other familiar names from our online autism community as well, and we’ve all been tapped to answer questions and provide insight on issues that people may encounter.

The site includes so much more, including interactive goal-setting and rewards for achieving those goals, forums on many, many health issues (I’ve really learned a lot about my fibromyalgia since I’ve been checking in!) and also just simply providing great ways to help you stay on track with your forward progress!

Wellsphere will launch a new service called Health Maven, where you can ask a specialist a question about whatever issue you’re having. Some of those on the list are doctors, some nurses, others have personal knowledge through their own conditions, or perhaps their children’s. I know that most of the good advice I’ve received about my children’s autism I’ve gotten from other parents–so I’m very excited about this!

Dr. Rutledge says: “Health mavens are carefully selected, knowledgeable, health experts who are committed to helping others live healthier, happier lives.  Hundreds of Health Mavens have volunteered to join the program and answer questions, with new Mavens signing up every day.”

“We’re witnessing an incredible growth in the number of people using the Internet to find health information” said Wellsphere’s CEO Ron Gutman.  According to an iCrossing research report, for the first time in history people with health questions are more likely to turn to the Web for answers than to their doctor.  “Recognizing this trend…we assembled the world’s leading network of over 1,800 medical and patient experts to share … with’s almost 3 million monthly visitors. We are humbled by the experience, expertise and genuine care these wonderful individuals share every day with people who come to Wellsphere looking for answers,” said Gutman.

So come by–click on the button on the sidebar and ask your questions!

Will they come for you, too?

I’ve been gone for the holiday and apparently missed the hubbub about Alex Barton.

For anyone who’s not in the loop on this, here you go: Alex Barton’s story. Basically, a kindergarten teacher played Jeff Probst and let her 16 students vote one of their classmates out of their class–after they each got a chance to openly level ‘charges’ at him, stating to this five-year-old still in diagnostic process for ASD all the things they didn’t like about him.

This is all after he was sent to the principal’s office for appropriate discipline. The teacher, Wendy Portillo, took it on herself to humiliate the child further when he returned, and forced the children to denigrate their fellow student. She admits this happened.

Alex apparently screams now when he thinks he has to go back to school, and he hasn’t returned. Who could blame him?

His mother attempted to file police charges for emotional child abuse, but they were rejected by the state attorney’s office because they didn’t meet the criteria.

All of us with diagnosed children have days when we worry about how our child’s behavior will be viewed by whatever educational institution he or she is assigned to. Granted, we know they don’t always act like everyone else. That’s why we have IEPs and other documents that force the schools to treat our children fairly, taking into account whatever issues they might have.

But the rest of you shouldn’t sit back, complacent, thinking this can’t happen to you. Anyone have a seven-year-old boy? Think about those wild and wacky behaviors and the antics boys en masse can get up to on the playground. Think about the way girls are dressing “sexy” even younger and younger, and how even kindergarteners now have their own “Mean Girls.” Think about children in wheelchairs. Children of Latino heritage. Black children. White children. Children. Children in school to be educated about everything, including the differences among us.

It would be well to remember the words of Pastor Martin Niemoeller, very apropos, here modified by me to provide a jumping off point for discussion:

In our school they first came for the AIDS students,
and I didn’t speak up because I didn’t have AIDS.

Then they came for those on the ASD spectrum,
and I didn’t speak up because I didn’t have autism.

Then they came for the hyperactives and those with bipolar,
and I didn’t speak up because I didn’t need medication to participate.

Then they came for those of different skin color and heritage,
and I didn’t speak up because I was a white student in the majority.

Then they came for me —
and by that time no one was left to speak up.

Interview with Alex’s mother

For more support for Alex and his mother, see this. For thoughtful reflection on avoiding this situation with your own child, be reminded here.

And yet another good take here, on tolerance for teachers who cope with an awful lot on a daily basis.

All in the name of progress

I managed this week to conduct not only the “transition to junior high” IEP for Captain Oblivious, but also the first negotiating session with the new managed health care people. Let me say, either meeting was seriously worth several glasses of wine and maybe a Valium.

The IEP meant meeting the responsible people at the junior high, and realizing with more of a pang than I expected, that these professionals who have seen the boy through five years will no longer be a part of his life. A new autism support teacher–fortunately a young lady I’ve known since she was a child– means everything will be different. Everyone is well aware of his issues now, and the repetitive nature of the listing of needed supports for success hammered home how difficult he can be.

We joked about how he thinks he knows everything, and I said he should hurry up and get to be 18 while he still was smarter than everyone else, so he could get his own place and be right ALL the time. The school psychologist, who’s been a real support, wondered how I could be sure C.O. would be out on his own when he was 18.

“Because his father said so,” I assured her, and there was a big laugh.

But at the same time there was a little poignant pause when I really wondered.

The day before, I’d spent several hours with the new managed care team for mental health, where they analyzed the results of the two-hour evaluation the children had a month ago with a local psychologist’s intern. I didn’t get to see the report, “because of HIPPA,” they said, but I was aware the recommendation had been exactly along the lines of my request, 30 hours of mobile therapy and TSS a week all summer for Little Miss and C.O. for an inclusion summer camp to work on social skills. The director of the wraparound agency we used before was there, and she backed me up 100 percent as they went over the recommendations they had advised me we needed to have.

The county person kept popping up with useful statements like, “Oh, have you heard of Autism Speaks? They have an awesome website.” Yeah, no kidding. I’ve been at this seven years, pal. What’s your excuse? The rep from managed care seemed to understand everything we wanted as we went through the children’s strengths (relatively few) and areas of concern (how much time do you have?) and came up with a beautiful recommendation. We all left smiling but weary.

Then Michelle from my agency says, “Oh, by the way, you may not get it.”

“What? No! Everyone was happy. They wrote it all down!”

“They always do. Then they take it back and decide whether they’ll approve it or not. If it goes to Peer Review, even less chance.”

So I headed back to my car with a sigh, wondering if that whole six or more hours had been a total waste. And now, after a week of reviewing just how bad the situation is so we can get help, I’m looking for my rosy-colored glasses so I can get a positive outlook again. Bottom line is, every problem we overcome means we’re moving forward. And besides, C.O. came home from track and field day with his first blue ribbon ever today–and Little Miss got a blue, a 3rd and three 4ths. Just have to keep those blinders trained on the bright side.

Dessert may come first–or not!

Welcome to the April 9, 2008 edition of Dessert May Come First– Or Not, the Many Flavors of the Autism Spectrum. This is the first edition of the only Blog Carnival entry to date to deal with autism, Asperger’s and issues of the spectrum. I’m pleased that we received entries from a number of different perspectives, and I’m proud to share them with you.

lastcrazyhorn presents Different Vs. Indifferent; posted at Odd One Out, where she takes a look at a situation where something is definitely broken, but whose job is it to fix things?

One thing we know about our kids with autism is that they are very literal. For example, this is how my daughter plays the game of “catch”: Papa throws her the ball; she catches it. Mission accomplished, game over. In this piece, lastcrazyhorn presents Falsehoods As Seen From An Aspie’s Perspective; posted at Odd One Out, where falsehoods are not just lies, they are much more.


I printed this post out to take to my soon-to-be-middle-school son’s IEP meeting, to see what we could do to bully-proof him as much as possible, or at least not have him punished for the backlash of a bully’s attack. Very thoughtful words for all of us with children from someone who’s been that kid. lastcrazyhorn presents Imagine This (A Narrative on Bullying); posted at Odd One Out.


Carol presents Race for a cure or journey towards acceptance? posted at A Different Nest: Embracing the midlife journey while mothering special needs children, saying, “This is my first carnival submission. I think it may be useful to parents of more recently diagnosed kids; and more veteran parents may (or may not) say “I’ve been there, too.” Thanks, Carol,”

Casdok presents Mother of Shrek: Our children teach us posted at Mother of Shrek, where she shares “Lessons for parents on the path.”


Even when our path seems darkest, there is always an upside we need to cling to. Darcy presents Something to think about « posted at What We Need, saying, “Food for thought.”

While we’re on the subject of food, this may not be right on topic, but our kids will really like the videos, and we could use the story as a metaphor. TherapyDoc presents Eating Just Enough posted at Everyone Needs Therapy, saying, “I personally like dessert first. But take a look at this, have the kids look at the video. We can learn a lot from nature. And despite what I say, it’s best to try not to overfeed.”

That concludes this edition. Submit your blog article by the first Monday of May to the next edition of Dessert May Come First–Or Not using our carnival submission form. Past posts and future hosts can be found on our blog carnival index page.

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And in other news…. I’m featured in other folks’ blog carnivals this week at Carnival of Moms in Law , the Scribes Blog Carnival , and a special repeat performance at the Best of Me Symphony. I’ve also got a two-segment appearance in the upcoming Soup to Nuts carnival, a multi-course meal spread over five different blogs coming on April 30, 2008, so stay tuned!

Thanks to all of you who participated in the Tourney for the Journey, NCAA fundraiser for Sierra Nevada Journeys. I’m proud to say we finished LAST out of 63 entries! Go Team Weird Stuff!!! *crowd goes wild* We may not know Jack about college basketball, but I think we are now the proud owners of a Reno Envy T-shirt!! (Get it? Reno, N.V.?? hahahaha…Westerners are hi-larious, right, Jayne?)

Finding common ground

In the end, I think it came down to who had better drugs.

When I got to school for the team meetings for Little Miss and Captain Oblivious, the school psychologist and I, fighting off migraines, compared notes and treatment regimens, shared hints and tips. We bonded. We were Sisters. It was good.

It was the first meeting I think we’ve had where I felt like everything we said was heard. I had printed blog entries from lastcrazyhorn and Asperger Square 8 in hand, having sent them by email earlier as well. (Only one person had actually read the things, because they can’t read blogs from school. How efficient.) But we passed around copies there. We had names, numbers, suggestions, questions. We had those three little letters after my name (Esq.) that strike fear into the school system, apparently, since the principal came to sit in. (Last meeting it was the district assistant superintendent. I must be getting less scary with age.)

We were all thrilled with Little Miss’s conversational advances, but agreed (!!) that now that she’s in third, and moving to fourth grade, she needs command of a much greater vocabulary and expressive base. We’re looking for resources in the community as a joint venture. Also I learned for the first time that handwriting is a separate process for autistic kids; so when we ask her to write her spelling words, she has to fight with the writing as well as the memorization and the meaning of the words. We’ve been letting her type them into the keyboard, which they approved, and they’re going to look into getting her a keyboard at school. After all, she has the affinity and computer geek genes… might as well put those to work!

Moving on to contestant #2, it was a more bipolar session. We heard for the first time that just after Christmas, a bunch of “friends” had trained C.O. to chase after thrown packs of food, to “go fetch”, which he did cheerfully, thinking he was participating in a hella fun game. Oy. That, along with several other incidents where it was clear he was either pushed to strike out or completely missed that he was being cruelly mocked, showed the teachers exactly what I had prophesied for him at the IEP meeting last year, and bore out what I had provided in the handouts. We strategized about lessons at home and school in how to tell what others are really thinking– on video– which he’ll eat up.

On the other hand, C.O. has bloomed in the sciences this year, scoring the highest grade in the the sixth grade class on science tests, and they all praised his unique way of approaching problems (at the same time disappointed he always has to do everything without much impulse control and in “his own way.” Yeah, welcome to my world.) The principal even hinted he would go to the mat to have C.O. moved to the accelerated track in science if I’d like him to. Wow.

The autistic support teacher from the middle school took copious notes. We talked briefly after the meeting and she gave some really good suggestions about how to protect him in the drafting of the IEP. I’m actually looking forward to that meeting, a month or so from now.

So I left in a rosy glow, sure the road ahead will be paved with yellow bricks and we’ll get our wishes granted. Or maybe that was the drugs.

See comments for suggested materials and methods, particular for Aspie tweens.