A day that should ‘live in infamy’

Many people today are celebrating May 4 as the lisping salutation of Star Wars’ “May the 4th be with you.” I’m a big fan, don’t get me wrong–I’m all for celebrating George Lucas’ creation.

ksu1But in my mind always is the “other” May 4. That would be May 4, 1970, 50 years ago today. I was in high school, and my stepmother was attending college–at Kent State University.  She came home from school that afternoon in tears. By the time the news was on that night, we all saw what she’d escaped from. National Guard members had shot and killed four students and wounded nine more in the middle of a protest against the expansion of Vietnam War into Cambodia.

From Kent State University records: Four Kent State students died as a result of the firing by the Guard. The closest student was Jeffrey Miller, who was shot in the mouth while standing in an access road leading into the Prentice Hall parking lot, a distance of approximately 270 feet from the Guard. Allison Krause was in the Prentice Hall parking lot; she was 330 feet from the Guardsmen and was shot in the left side of her body. William Schroeder was 390 feet from the Guard in the Prentice Hall parking lot when he was shot in the left side of his back. Sandra Scheuer was also about 390 feet from the Guard in the Prentice Hall parking lot when a bullet pierced the left front side of her neck.

KSU2Nine Kent State students were wounded in the 13-second fusillade. Most of the students were in the Prentice Hall parking lot, but a few were on the Blanket Hill area. Joseph Lewis was the student closest to the Guard at a distance of about 60 feet; he was standing still with his middle finger extended when bullets struck him in the right abdomen and left lower leg. Thomas Grace was also approximately 60 feet from the Guardsmen and was wounded in the left ankle. John Cleary was over 100 feet from the Guardsmen when he was hit in the upper left chest. Alan Canfora was 225 feet from the Guard and was struck in the right wrist. Dean Kahler was the most seriously wounded of the nine students. He was struck in the small of his back from approximately 300 feet and was permanently paralyzed from the waist down. Douglas Wrentmore was wounded in the right knee from a distance of 330 feet. James Russell was struck in the right thigh and right forehead at a distance of 375 feet. Robert Stamps was almost 500 feet from the line of fire when he was wounded in the right buttock. Donald Mackenzie was the student the farthest from the Guardsmen at a distance of almost 750 feet when he was hit in the neck.

I attended KSU from 1974-1978, and the presence of the Guard was still felt there. You could walk from the Victory Bell on the Commons up Blanket Hill in the footsteps of those who had rallied that day, protesting the War, protesting the government, protesting the presence of the Guard at all. You could walk around the journalism building to the parking lot at Prentice Hall (the place I lived freshman year) and see the tributes left for the dead. The bullet hole in the big black sculpture remained. Each year, students and staff  of the May 4th Task Force held a ceremony, remembering what had happened.

In 1977, the University proposed to build an expansion of Memorial Gym. The plans extended the building onto a section of the campus in front of the journalism building that was part of the area where the shooting had taken place. The Task Force and others protested this construction, saying it would change the space where the shootings had taken place. In May 1977, protesters began setting up a Tent City on the hill, and it soon was populated by many, many people sympathetic to the cause.

I met several of these folks while I was finishing my last semester there. Tent City had whole families who cooked meals together, jam sessions, political discussions. It was a glimpse back into the Sixties, for those of us who had been too young, people who’d gathered to express themselves and weren’t afraid to be arrested if they got to make their non-violent point. Because there was no violence, this go-round–Joan Baez and others came to sing of peace, and Dick Gregory and Ron Kovic urged the protesters to continuing sitting-in. Arrests occurred several times through July and August as the university attempted to clear the campers off the property, as hundreds watched, chanting “Long live the spirit of Kent and Jackson State!”

I don’t intend to get into the discussion of whether the May 4 shooting was justified–the court says it wasn’t. The ROTC building had been burnt by the protesters, true. The fact that some of the protestors were throwing rocks at the National Guard is also true. No one was blameless here (except for victim Sandra Scheuer, who was apparently just on her way to class and not involved at all).

But I believe it’s something worth revisiting in this day and age as protests ramp up over the orders meant to protect life and limb against coronavirus. Will there come a time when it’s less about politics and more about life and death? When it will be considered “justified” to shoot young people? Black people? White people? What kind of society do we want to have?


Can I get your help?

For many years, this blog told stories of our adventures with autism, something that was completely new for me when my children were diagnosed, all three of them. We did the therapies, we made the concessions, we shared the stories and learned from all of yours.

During that time, I wrote a manuscript that starred a teenager with autism. She becomes part of a young adult fantasy tale, a quest to save the universes from dying. I based her on vignettes from my own children, the odd way her language comes sometimes, the black and white thinking that makes things like idioms a challenge–or unintentionally humorous.

After some attempts to get it published, I shelved it, thinking maybe the world wasn’t ready for this. But with the success of THE GOOD DOCTOR, and some other indications that autism awareness is becoming more mainstream, I tried again.

I am proud to announce that THE LOST CHORD is being published by Dragonfly Publishing this spring. Not only is there a great story told, but the other teens in the story learn about autism, and the value of Bee’s thinking outside the box. Here’s an excerpt:

Miss Fry appeared puzzled. “Yes, Bee just came to get that. She said she couldn’t take the whole project, but she needed that rock.” She shrugged. “It’s hard to tell with her sometimes. But she’s come a long way.”

            “I—I don’t know a lot about autism, Miss Fry. Is she gonna be okay sometime? I mean, will she get better? You know, be like everyone else?”

            “Will she ever be like you, or me? Probably not. There’s an ongoing debate among the Powers that Be and parents about ‘curing’ those with autism by various means, but it seems to me that would be doing those individuals a disservice.”

            “You mean they want to be—broken?”

            “They aren’t broken, Cory. They have many unique characteristics and gifts that might be changed forever if they were made to be ‘like everyone else.’ But certainly we can help them communicate better, succeed in their own way. Like this.”

            She tapped the poster board with a smile. “As an independent student, Bee can accomplish a small focused project with excellence, whereas in a class of thirty students, she gets lost and can’t be heard.”

I’m very excited at the chance to teach people about the wonders of our kids. One thing that would help would be reviews by people with knowledge of the subject. I can get you review e-copies in advance of our May launch, if you’re willing to read and share your opinion of the book. If you like it, I’d be glad to guest post on your blog as well, to spread the word.

You can also like our Facebook page and register at our blog to get more information as we get closer. Endorsements would be great to add to our page as well! Fans of the book will be invited to join a special club called the Chordians, where they will get special prizes and more content.

If you can help me out, and are interested in any of these options, please contact me at lyndialexander at gmail dot com, or leave a message in the comments on this post. I hope you’ll join me in the next step of this grand adventure!

When they finally grow up–but not really

Regular readers know that I’ve been on quite a journey with my third family–three kids on the spectrum, and all of them a little different even from each other. Well, we crossed a milestone this week–Little Miss turned 18.

Yes, they’re all adults. Under the law.

The two young men are both working part time, and living with their father. Little Miss is entering her second senior year, now in a school with a superior program in terms of directing these kids to find meaningful work. She’s interned over the summer with a local barista, in order to strengthen her position applying for a formal internship at Starbucks this school year.

But I can still hardly let her out of my sight.

She’s very polite, not always aware of stranger danger, and she can’t always handle herself well. I push her to do her own talking at doctor appointments–which works well until she announces that she has “severe depression” after watching too many drug commercials on tv. In reality she’s one of the happiest people I know. Really. That one took some explaining.

Suddenly I see why the teachers were nudging me to get her a guardianship. She is entitled to do whatever, now. She can stay out all night, she can get married, she can….


Fortunately she doesn’t want to do any of those things. She has a boyfriend at school, but it’s in name only. They’re both pretty immature. An occasional handholding is sufficient, and I’m surely okay with that.

Gradually I’ve been urging her to do some cooking, some cleaning. Wash her own clothes. She’s pretty responsible around the house. But it’ll be some time before she’s ready to live on her own. If ever. (I’m finally being realistic about this–I always thought she was running behind her peers, but that she would eventually catch up. Now I’m not so sure. But we’ll see.)

Any of you who’ve gone through this, I’m open to suggestions. So many parents of neurotypical kids shoot for 18 and done, or maybe, college and done. What do you do when you really don’t know when “done” will be?

Moving on up

We have what might be one of the most important IEP meetings of Little Miss’s life coming up the first week of March: transition into junior high school. She’ll be moving from the school with the autism support center in it to a larger school combining four elementary schools.

Our district has a good number of autistic children who attend, on all sides of the spectrum. As I’ve said before, they are a victim of their own success–people move here on purpose to take advantage of the thoughtful program. We haven’t had a worry with Little Miss since her first day of  kindergarten. The school has always been willing to provide whatever supports she could use, whatever we suggested. The last two years, she’s been in the self0contained autism support class about 40 percent of the time, for reading/spelling and math, core skills. She has all the specials with her peers, along with social studies and science, which she has been interested in and over the time period she’s even gotten brave enough to raise her hand to answer questions in class. The AS class has several aides, and Little Miss has a mutual admiration society with all of them, as well as the teacher she’s been with since second grade.

Over the last six months, her love of school has started to fade. If she has work she can bring home and think out, she does very well; if she has a test where she must process the language quickly, and ESPECIALLY if she has to theorize or analyze something, forget it. Questions like: Explain why the aftermath of the Civil War contributed to the growth of industry in the States, blah blah blah are just beyond her. Give her a map and ask her to find a place? Done. Ask her to look up words in the glossary? Done. Ask her why or how something happens? No way.

So here we are at junior high. I’m remembering from my other children that the slope continues upward, what is expected of the kids. Analysis and intuition are very important. Math goes beyond what someone needs for everyday living into equations and problem-solving in the higher ranges. Simple book reports change over to in-depth essays about literary themes in our world. If she hasn’t acquired that skill, then every day in a class like that could be hell. Why would I put her through that?

On the other hand, I could stipulate that she spends her academic subject time in the self-contained class. We could try to design a practical curriculum based on an ‘everyday needs’ thought. Do most of us need higher math functions in life?  Even with a graduate degree, my math needs aren’t much beyond simple multiplication and division . Granted, algebra probably helps my problem-solving ability, but complex polynomials really don’t matter much.

For Little Miss, who’ll likely work through vocational school in horticulture or child care (which she’s very good at), I’m sure they can provide her with a meaningful solid base of information.  She can still take cooking, art, even wood shop–she’s amazing at figuring out how things work. Without words.

Will the shock of moving to a school where you change classes every periods and the incipient noise (horrid for a sensory-overload child) be too much? Better to stay one place for many periods of the day? In the self-contained class, she’ll avoid some of the worst of the junior high school bullying, I think. She’ll be surrounded all day by people looking out for her. She’s also made friends with many children at the previous school who would help look out for her too.

But at the same time, I regret the things she’ll miss. Should we push her into the social studies and science, just for the opportunity of absorbing what she can auditorily, and hoping we can adapt the work into something she can do without rejecting it altogether?

Too many questions, not enough answers. We’ll be able, of course, to change the program as the year progresses and we see how it develops. But for all of you who’ve been through this, any suggestions you have would be invaluable. Thanks so much!

Progress? Maybe

As Little Miss headed back to school this morning for the last year of her elementary education experience, I had to admit some trepidation on my part. She’s grown this summer, in a number of ways that I expect will impact her school year.

Physically, of course, about five inches. At 11 years old, she’s approximately 5’3″. A big change. We snuggle on the couch now side by side, definitely not with her in my lap any more.

Hormonally, as I posted earlier, as she has entered womanhood. The actual details of the “what you do when” have been incredibly smooth, thanks to her usual linear thinking; i.e., once she learns this is the process for handling something, it will always be the process, and she will follow it every time. That will work great until the day she uses all the supplies and forgets to tell me and then the world will end. But I digress…  The moody end of the hormonal thing, though, is somewhat difficult in a child who isn’t particularly aware of or interested in social “coolness.” When she feels crappy, so can everyone else. her teacher, Mrs. L. will be so pleased.  (NOT.)

Over the summer, her speech has expanded quite a bit in terms of words she will understand and use, but she has regressed into mumbling or whispery talk that makes her hard to understand. Considering how often we prompt her to have conversation, this gets frustrating for both sides on a regular basis.

On the other hand, she’s become very proficient in just handling things without words. She marked time this summer until the fair, so she could enter her bell peppers therein. If she sees a mess, she cleans it up, unlike the men of the houshold, who will gladly walk through any puddle for hours before grabbing a paper towel.  She has learned to cook some minor things, so she doesn’t have to depend on an adult. I’ve even found her trying to make coffee on several occasions, so I’ve taught her how to brew a pot correctly, before she sets herself on fire or something.

She continues to be empathetic and looks out especially well for children younger than she is. Which is good. She also doesn’t always stop and think about rules, as she showed when she decorated my other daughter’s new swingset with indelible marker last month. Oy.

Has she come a long way from “your child has permanent brain damage and won’t be able to accomplish much”? You bet. That’s exciting as heck. The rest, as with all children, I suppose, is a work in progress.

Oh THAT kind of Friday the 13th…

Yesterday was a wild day.

I had no clients, no court scheduled, and planned to spend the time working on my crazy November goals. 2,000 words at least. Maybe 3,000. Move the girl right through the funeral home scene where she discovers the truth behind–

Then I got the call about 9 a.m. that the Captain was suspended for three days. Come pick him up. Now.

My jaw fell far enough that it was a good thing it took me awhile to get to the school, trying to figure out why on Earth the Captain would believe it proper to email his (female) AS teacher a whole page of sexual limericks. I mean, really? What?

But I guess that was the final straw for the junior high. He’d been getting confrontational in classes all week, had made several pretty aggressive statements to said AS teacher as well, and to start the whole week’s events off, he’d thought his health teacher didn’t have enough materials for their talk about the differences between men and women, and had taken his study guide from his Our Whole Lives class along to share.

The Unitarians teach this wonderful class, at age appropriate levels, but there is an acceptance of healthy sex among adults of various genders and a graphic openness in the cause of providing true and correct information that in all likelihood doesn’t comport with a small-town white-bread mental set in junior high. In any case, he’s now known as “the Boy with the Sex Book.” *sigh*

Setting aside the fact that the team’s policy is that the Captain is not allowed to take any books to school because he won’t do his work if he has other materials available, or the fact that we’ve had long talks every day for two weeks that the arguing with the teachers has to stop, or the fact that when he gets in trouble it is not his AS teacher’s fault for telling us, it’s his own behavior that he should blame…well no, we can’t really set those facts aside.

On top of that, between the time they called and the time I got there, the Captain also commented to the principal that he thought he’d like to hurt someone.  This is the second time he’s made such a comment in two weeks. Of course they shared this with me, and when pressed, he identified who he’d hurt. (Funny how all his acting out is at school, but the people he wants to hurt are at home…)

So I left the school and went straight to the counselor’s office, who of course didn’t have time to see him, but they did send the mobile crisis team to the house. They spoke with him, at which time he was sweet and charming and they determined that he was not a candidate for inpatient evaluation. They did get him to sign a contract saying he wouldn’t hurt himself or anyone else, and said it would be a good idea for us to lock away all the firearms and pointy objects.

Really? Ya think?

The saddest part about all this, is that early in the week his dad and I were talking about how he had been making steady progress and he should get some of his privileges back (lost in September) and perhaps move into a more normal teen status with electronics access, etc. But here’s proof why he needs to be restricted from the Internet (and he’s lost his school computer privileges now too) and just can’t be trusted.

So an unlucky day for us all. But hopefully, hitting bottom starts another upswing. I’m always open to suggestions–got any?

Whatever works; or the nature of possessions

What difference does it make how much you have? What you do not have amounts to much more. — Seneca

The battle of the wills continues with some improvements.

The Captain has duly been given the prescription flavor of the week for ADD. The doctor didn’t even bother to look at all the other possible diagnoses; no pills will fix those. So be it.

The  last time he took ADD meds he developed a series of tics that still surface from time to time today. The doctor said that this new medicine might cause tics as well. Sure enough. Every 15-30 seconds, little vocal tics that sound like he’s gasping for air. This after two days of taking the pills. Is it because the doctor told him he would have tics?  The Cabana Boy and I disagree. I just hope the teachers and students find this distraction an improvement over the previous distraction. This was their call.

After multiple meetings with the school officials about the Captain’s antics, his behavior has improved about 85%. The school absolutely took credit, saying it was because they devised a cool check off chart for his teachers and gave him an aide. Contrarily we took credit for this, since we had come down hard on him by taking away his privileges (i.e., no books, no movies, no tv, no dessert, etc.) and had lectured him at length about proper behavior.

On a whim last week, I congratulated the Captain for his better effort and asked him what he thought had helped him see the light.  His reply? “You took all my stuff away.”

So all these high-priced resources (figure in the hourly rates of one psychiatrist, half a dozen teachers, a psychologist, a principal and a lawyer) were a waste of time, according to his elaboration on the above statement. All he cares about are things.

In retrospect, I shouldn’t have been surprised. We’ve always known he doesn’t relate socially, and his visit out of town this summer proved his lack of connection to anyone, even family he’s lived with his whole life. (I’ve even wondered if he’s got some bit of reactive attachment disorder, based on his  interaction with people and his history prior to my involvement.) So things it is, as long as that works.

As for myself, however, I find I’m less attached to things as I’ve moved past the half-century mark. I know it alarms my children when I pass on family heirlooms or offer them other household items. No, I’m not dying. I’m just building good feng shui and clearing clutter.

Living with a chronic pain situation, too, creates necessity for new focus, shorter attention spans to fit day by day living. I find that I am much more appreciative of a tasty and creative meal or reviewing a memory book of a favorite family trip than I am of redecorating or moving furniture around (something I used to do constantly).  I’d rather work on writing than waste time on clients with no motivation to change. I’d rather travel and see new places than buy new cars or appliances.

I realize how fortunate I am to have what I need, and to be able to recognize that definition. Sure, there are many opportunities I still dream of, like overseas vacations and maybe even real health care someday. But for now, I’m glad that I can mark my most important possessions as those of intangible proportions like family and love. I hope someday the Captain can get there, too.

Back off track..as 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.