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.

The dream job

“Do you miss it?”

I was sitting in court next to the legal advocate from our local women’s shelter this afternoon, as we supported a woman who’d been brutalized by her husband. The photos from the hospital showed ugly bruises inflicted by the man’s cane. Yes. Cane. The man had the temerity to beat her till she was black and blue and then came to court, claiming he was too disabled to have managed the feat.

“I do miss it,” I confessed. From 2001-2004, it would have been me advocating for this woman, bringing 15 years of legal experience to the aid of battered women as part of the Blossom Project. It was my baby, a special six county program solely devoted to assisting victims of domestic violence. As the Attorney Coordinator, I designed the services, including eight-week classes geared toward giving victims much-needed information and direction in terms of where to find jobs, housing, child care, and more. Each week, I also represented up to 15 victims, mostly women, in the process of gaining protection orders in court.

There are a few women who really stand out from the hundreds of bruised faces I saw over those years. One came to every class, listened faithfully to everything that was said, but refused one of the bright pink carnations the ‘graduates’ received, for fear her husband (who she was preparing to leave) would think she’d been with a man. Another waited two years before she gathered the quiet courage to leave, more for her sons’ sake than her own, once they became secondary targets of the violence; as she predicted, she lost her income, then her house and finally her children. The system managed to work against her at every turn. A different one did much the same, but finally her children saw the truth of things and came back to her. She put herself through college, got a Fulbright to go to Africa for a semester to help women there, and now counsels abused women professionally.

There is nothing worse I’ve seen in my law practice than the results of one human brutalizing another, particularly when that man or woman or child is one for whom the batterer has professed great love. What kind of screwed-up message does that give the loved one? Studies have shown that it obviously distorts the ideas about relationships for a child growing up in such a home. Many of the men and women who I represented had grown up in a home like this as a child. That’s why we believed the education component was so important–giving them a hand up, if they’d take it.

Some did, and it was a proud day for both of us when it happened. Many didn’t. Statistics show that a DV victim returns an average of seven times to the abuser before being able to make that final break. I’ve been lucky that none of my clients have received the other kind of finality. They’ve been threatened with capital punishment if they leave, and occasionally, I’ve been threatened as well with harm for helping them. But somehow I kept on.

I still take divorce and custody cases referred from the women’s shelter, often pro bono, because someone who knows what they’re doing has to stand up for these women. I teach the chapter on civil remedies each year during shelter volunteer training. The legal advocate knows she can call me day or night for immediate advice to help her clients, who often need to have information to make a split-second decision. But it’s not the same as being the one in that courtroom chair. That position was the one time in my career I could feel that I was a hero every day. Yes, I miss it.

For information and food for thought.

Issues of the Day

My friends, this is NOT the week to be a registered voter in the state of Pennsylvania.

The phone is ringing at least once a day with someone demanding to know if we understand their candidate’s position on the important issues of the day: Clinton’s a recorded message, Obama’s a live person (point: Obama).

Frankly, I have never been so happy we really gave up watching local networks in favor of cable. Even the TODAY show is crammed full of political ads, none as vicious as we may have seen in years past, thank the Powers that Be. For some 20 minutes in the morning, the only local news we see is inundated with campaign rhetoric. Most of it is in the non-controversial vein, i.e., do you want to keep your job, stop abuse, get medical care, protect freedom, etc. Well heck yeah, that sounds good. (Except maybe the job part.) As a general rule, people working? GOOD. Health? Good. Protecting kids–GOOD.

But somehow those people’s “issues of the day” are not my “issues of the day.” My issues are much smaller, closer to home, like trying to convince my Aspie boy that even if he remembers what the teacher said, that he should still take notes in math class. Because she said to. The world does NOT revolve around you, dear. When you go to junior high next year, you can’t just get up and wander around the class because you feel like it. And the worst of all, what the school psychologist kept bringing up at our last meeting: Hormones. But I’m just not going to think about that now. Call me Scarlett.

Or fighting to expand therapies for my daughter so she can learn to use language in a world centered around verbal and written communication. Or keeping up with 8-10 loads of laundry a week while making all the children’s appointments, dealing with educational issues, cooking, cleaning, etc., oh and having a mostly full-time job. I sympathize with those of you who are also dealing with this or any one of the other experiences you all share every day. Or dealing with the small inequities in the legal system that subvert justice for my individual clients.

So those folks on the commercials will have to forgive me if I don’t really focus on those broad brush strokes. Not much I can do about them, to my mind. I’m not even convinced that any of these candidates can do much, in this clogged-up bureaucratic government we’ve inherited. These little issues, I can maybe solve. It’s that saying that’s posted everywhere about how a hundred years from now, the things you own might not matter, but the changes you’ve made in a child’s life might mean everything. I’ve got to concentrate on that, at work and at home.

I admire and encourage those who have the interest and energy to keep up with the political arena, particularly in the area of autism. The woman who comes most to mind is Cindy Waeltermann of Autismlink. I’m on her mailing list and get editorials and calls to action regularly. But other blogs I read regularly show me people are paying attention, like this and this and many others. I just find it hard to get fired up about any of that when I’m dealing with perseveration and hypervigilance and doctors and therapy and meetings and SpongeBob. Again.

That’s a real shame, because here we have the first viable female candidate in American history, something for which I would have been firing off rockets about 20 years ago when I left law school, my feminism in full flight. I was always sure I’d be out there campaigning and flag-waving when that happened. But this one, she just doesn’t move me. Not just because of the canned phone appeals, either.

We also have a young, idealistic candidate, who would normally have been someone I could get behind and respect– but he just doesn’t click, either. But I’m glad he does click with young people, because they need to learn how valuable the right to vote is, and get out and use it.

Then there’s the other one.

I’ll be in the voting booth on April 22, with my kids, because we always take them along to show them how important it is to exercise their rights. Baby steps. But as Lao Tzu said, the journey of a thousand miles starts with a single step.

Lao Tzu also said this: Be Content with what you have; rejoice in the way things are. When you realize there is nothing lacking, the whole world belongs to you. This is the reason for the new button in my sidebar, “How Rich are You?” which I learned about at Alvinology. I discovered today that even though our family struggles each month financially to stay on top of things, that by this scale I am in the top five percent of the world, income-wise. That’s mind-boggling. So, test it out. Maybe we can discover that we are all, in many ways, much richer than we think.

The road to recovery

Sometimes, in talking to people, their eyes glaze over, and I can almost hear them thinking, “Is she on to that autism thing again?”

I confess, I talk about it a lot. I talk about it to clients, many of whom face autism in their own children. I talk about it to colleagues while we’re waiting for hearings. I talk about it to my sisters when we share each others’ weeks, and it seems my tales of triumph and woe go on and on. I write about it here, and I’m grateful many of you understand and let me know.

For all I lecture about making your life about other achievements besides the raising of an autistic child, the fact remains, a family member with autism is all-encompassing. The autistic life flavors every minute of every day. We must remember to give notice to Captain Oblivious that he has a special program at school so the meltdown at a change in routine doesn’t occur. We push and push to get verbal responses out of Little Miss to every question, force her to stay engaged. We stay on top of Ditto Boy’s meds and watch all three for regression, new behaviors, bad behaviors, falling grades, violent outbursts, interaction… anything. All day. Every day. We go to work and wave them off on the bus, but we wait for the phone to ring.

Someone close to me is a recovering alcoholic, sober now for some time, and her continual vigilance on the issue of alcohol was getting on my nerves. At the holidays, she couldn’t come to the house if anyone was having a drink. She wouldn’t go out for lunch if there was a bar. She comes late for visits or leaves early because she has a meeting, and she’s always thinking about the process of recovery.

About a week ago, it dawned on me: we’re the same.

Both our lives are consumed with the awareness of continual threat; for her, that she’ll lose control of the alcohol again, for me, that something will go wrong with the children, something we should have been able to control. Alcoholics Anonymous has twelve steps to recovery; Autism Anonymous has…well. Hundreds. Most of which probably won’t work for every child, because of the diversity of symptoms and causes.

But the successful approach is the same: one day at a time, with constant attention to learning about your issues, and taking the best possible care of yourself, so you can help those who need your help. And my slightly modified version of the Serenity prayer:

God grant me the serenity to accept the child I have been given, so I can teach him what he needs to survive in our world; courage to work for change in the world so that she can be accepted; and the wisdom to know whether the child needs to be changed, or the world does.

Smart kids need an education, too

Apparently, Boston Legal is determined to annoy me this season.

In a story line about the suicide of a high school student overwhelmed by demands for performance, the lawyer in her closing ranted about how schools are at fault and should limit the activities of students. Outcome-based education, she said, was only interested in an end product–a student prepared for the dog-eat-dog competitive world–not the process of learning.

That I don’t disagree with. I don’t know how kids today keep up with the overscheduling of activities, classes, sports and clubs, with no free time for either themselves or their parents. The part that grabbed me was that lawyer’s insistence that Advanced Placement classes be abandoned, “because we don’t need college classes in high schools.”

Now wait a minute.

I confess I am a product of Advanced Placement classes in English, Chemistry, Biology and American History. My daughter attended gifted classes from the time she was six and actually took two classes at the local private college her senior year, paid for by the high school. We both needed to be challenged in a way that the regular high school curriculum couldn’t handle. In an age when teachers are often teaching to the lowest common denominator, No Child Left Behind means the upper academic levels, too!

However, our parents and our peer group did not insist we had to be acceptable to Harvard or Princeton. All we had to do was use our best ability to learn and do well in whatever we chose. I went to Kent State (after the National Guard), and my daughter to Indiana University of Pennsylvania. I still went to law school. Thank the heavens I don’t work on Wall Street; I’d hate it. She’s going to be a fine chef. We’re better for the education we were encouraged to have.

Let’s hope school systems across the country don’t take this to heart and continue the trend we’ve seen over the last decade of cutting gifted programming to serve the at-risk kids because of limited funding. These kids are our best and brightest, and if we don’t keep them engaged, what will the next generation become?