Do they have surreality shows…?

…’cause if they do, I think I need to sign up.

The kids started school today, officially bringing this summer to an end. Not a moment too soon, in my book. This has to be the strangest summer I’ve ever had. And that’s saying something.

As a corollary of the fact that Little Miss and Dr. Doo-Be-Do didn’t have any formal/medical/mental health programming this summer, I actually functioned as a Stay-at-Home-Mom. As I’ve worked forever, even carting baby B in a bassinet along with me to my floral design employer, it was an odd shift. (Recalling that job, born of the Mariel boatlift to Miami, and Bobby Catoe, the man I worked for, I remember he kept calling the baby “it” or “Ger-trud-ah”. He wasn’t a family man.)

I think the shift began when my father stayed with us this spring, and I was called upon to be available all day long as he needed help. I noticed my greater focus on tending the home–not that before, I just let it run wild, but it wasn’t as high a priority. Now it’s something I do all day long, not just in breaks from the office. Of course, when the children were here, I also played taxi driver, entertainment coordinator, main medical shuttle, food canner, jelly maker, garden maintainer, clothes shopper, etc., like many of the other moms I know who don’t have to work outside the home. It was refreshing. I like it.

I worked on and sold another novel this summer. I moved from student at writing conferences, to teacher at writing conferences. I sold books. I got interviewed. The writing life is mine to have now, which is a surreal existence all on its own. I’m still trying to fit it in with all the other hats. Not always a cozy fit.

The Cabana Boy is finally teaching full time in addition to his computer/network side business, and I got an official job with the county, which means a steady paycheck. Haven’t had one of those in about ten years. Definitely an unsettling experience. It still surprises me every couple of weeks to see a new deposit in my bank account. Pleasant surprise, mind you, but…weird.

And then of course, there’s the saga of the Captain, who completed months 12 thru 15 of his three-month stay in partial hospitalization, had his first interaction with the juvenile justice system and pushed his father to extreme sanctions out of desperation. It is a totally unreal feeling to know as a parent, that you have done EVERYTHING within your power to help a child and see what’s necessary to comply with the house/societal rules, and have him do something other than that. I mean, I’m not naive. I work in the system. I see parents and kids who have lives that are out of control, but so often those are due to economic or social issues that affect the family. I’ve had teenagers, too, a lot of them. I know they have interesting twists and turns all to themselves. But that’s not what we saw here. We were powerless to make the necessary changes happen, after doing everything we’d been recommended to do by those working with the Captain in the system.

So he’s in a therapeutic foster care setting. Because we failed. Even though we know in a cognitive manner that we had done everything we could, and that the worst part of his issues are due to things he can’t control, it still feels like we failed.

On the other hand, it’s been a week now, and our household has lightened immeasurably. The Cabana Boy says his chest has stopped hurting when he approaches within five miles of home on his way back from work. No more headache trips to the ER from the overload of stress. No more ulcer symptoms.  The other two children have adjusted beautifully and “the team” has become more than just lip service. We’re a family again, a “normal” family.

Any one of these things could have been a major shift in a life. We’ve experienced them all in a season, half in a blind rush that shoved us through the days. Only now that the pressure is off can we look back and reflect. It still seems like a bad dream, a lot of it. All we can do is hope as the days go by, that the worst of it fades and that we get to keep the best.

Until Hollywood calls…

Does the truth matter any more?

I can’t stand a liar.

Because the Captain’s alphabet diagnoses include Reactive Attachment Disorder and Oppositional Defiant Disorder, he’s found lying a very convenient way to get under my skin. We have practiced a no-tolerance policy for lying for all of my children, but him most especially.  Transgressions on their own carry one punishment; lying about them brings a second, sometimes harsher punishment. Most of them figured out it was easier to be honest. It might even lead to a pat on the head and a “I hope you won’t do that again.”

But don’t lie.

When we hammer on this seven days a week, wanting him to be a good boy and a good man, I wonder what lessons he learns from the news. Lessons from all these “good men,” who’ve worked hard and given themselves over to publc service, who wouldn’t know the truth if they tripped over it on a midday Sunday afternoon.

Anthony Weiner, whose judgment in Tweeting inappropriate photos is bad behavior enough to win him a punishment in my book, thinks he can actually get away with lying about it. Really? In this day and age? Has he learned nothing from John Edwards? Newt Gingrich? Bill Clinton? A trail of people who “thought I could get away with it” all the way back to Gary Hart and beyond? Really?

We work so hard to persuade this boy that it’s important to be truthful. That it is a sign of strong character. That it shows your respect for the person to whom you’re speaking. That the world just damn well works better when it’s based on honesty.

Maybe that’s why it feels like such a betrayal that these people, these “good men” in public service believe that not only can they break every moral and decent code for their own personal gratification, but then they feel it’s fine to lie about it. Because the risk is worth it.

That’s the same excuse the Captain uses: he thought the risk of getting caught was worth it.

Maybe I’m the one out of touch with reality. Why should we keep beating our heads against the wall to make him learn this, when it’s clearly not a trait that’s necessary to succeed in life?

Just another day

Some readers have asked lately why I don’t write as much about autism any more. “How are the children?” they want to know.  It’s kind of funny that this blog started out to connect to other autism families, to learn, to share, to get through the days, and yet three years later what we find as we hit the bottom line is, we’re all alone in this. And it’s not necessarily progress.

Nine years now, we’ve had the diagnoses to work with. And work we have. Hours of meetings, consultations, hospital time, psychological time, special teachers, special classes. The dedication of our lives to this process of helping these three children overcome the cards they’ve been dealt.

Doctor Doo-Be-Do, for the most part, has succeeded in his quest–as much as a boy just this side of adolescence can, I suppose. He’s still disorganized, still emotional, and has a hard time mastering the art of anger. Some of his flightiness is likely ADD, some is hormones, and– he’s a boy. Inexplicable to a mother who’s raised five girls.

He’s going back into therapy this week, mostly to learn to deal with his reactions to other people–how anger and misplaced sarcasm isn’t always the best choice, for example. And how to deal with his brother.

 Little Miss has spent all but the first year of her life in some sort of therapy, whether it was occupational, physical, speech, cognitive, hippo-, water, and now a round of medication. Incredible.

This week, she’s beginning work with a play therapist with the intent to strengthen her language skills. This therapist has been part of her life since she was about four, when all Little Miss could do at their intake appointment was sing the “Chicka-boom” song. She couldn’t answer questions, she couldn’t tell one day from the next, she had no idea of her place in the scheme of life. Now Little Miss has successfully overcome the hurdle into young womanhood, and she’s preparing for the entry into junior high school next year, with half of her day mainstreamed in regular classes, where she does projects extremely well, but tests less so.  In fact, Little Miss has been commended this year for her extreme empathy in assisting the little ones in the beginning autism support classes, helping them come to the right class and entertaining them till the bell rings.

I’m kicking around the possibility of home schooling her during her eighth grade year to really work on her receptive and expressive language skills as well as her life skills.

I’d add the depth of travel, which she loves, to give her tactile, hands-on experiences to flesh out her capacity to file words away and acquire the processing ability to keep her language available for use. With a firm plan of objectives from this long-time therapist, we could work toward goals, both mental and educational. Taking a truck and small camper, we can expand our world. Maps will trace geography. Museums, state and national park resources really bring science language home. Planning trips solidifies executive functioning skills; tracking our budgets enhances practical math skills. We will also read whatever we can get our hands on to make her language the same easy, effortless exchange it is for so many of us.

          If I can pull this off, the process will be documented in a book about that year, a story told in personal moments, therapeutic breakthroughs and pictures. B has suggested a companion volume to be written and documented by Little Miss herself–how interesting is that?? I hope her language expands to the point that’s possible. Maybe her volume can be primarily pictures. That’s the point, after all, to show how creative work can help give a person opportunities to become themselves in a world that doesn’t always see things their way.  Other autistic children might relate better to a book they can see without having to process words, too. She’s come so far already. What a gift for all of us if she could enter high school on the same page as her peers.

And then there’s the Captain.

After his ‘stellar’ behavioral record last year, several suspensions for outbursts and attacks on other students, falling grades, disgusting personal habits, the school sent him to a partial hospitalization program at the beginning of last summer. It was supposed to last till school began in September. Then they said they hoped he’d be done by maybe November. Then January. Now they’re hoping to effect some change by the time school begins in September this year. Maybe.

So far they’ve been able to make him stop hitting people, when it’s a ratio of two staff to ten students. He’s still disrespectful, angry, has tantrums–all the ODD stuff–and he doesn’t care to please others, and believes that he always does everything right and everyone else hates/sabotages/screws him over–all the RAD stuff. He’ll use the Asperger’s as an excuse, when anyone asks him to do something– “You can’t expect me to do that, because I have Asperger’s!” –but he won’t take time to learn about the condition, and the fact that Asperger’s people are just as successful, if not more so, than any other human being. They just have to make an effort first. An effort of any kind.

His hatefulness crosses over to home, too, and we are all treated to his outbursts and refusals to carry his share of responsibility. On a recent trip, he stayed home because of a variety of circumstances, and his little brother was a different person. Free. Happy.  One of those moments that really brings home how oppressive it is to have a child who sucks the life out of the family.

The doctors at the school seem to have the attitude that the Captain is just going to be like this, so we’d best adapt. But after nine years of therapy, including two years of 30-hour a week TSS and now 30-hour a week intensive partial hospitalization for the better part of a year, what else are we going to do? If the professionals can’t handle it, can’t make him see himself, can’t show him why responsible behavior and ambition and caring for others is a good thing, how can two human parents ever hope to?

So, true. I don’t have as much to share about our ongoing experience with autism on a regular basis, because it’s sort of settled into our lives. We still deal with it every day, sometimes on high notes, sometimes on low notes, but it’s now part of the routine, not something we can do something about. But the end of the story hasn’t yet arrived–don’t worry. I’ll keep you posted. 🙂

What fathers want

After dealing with the aftermath of several families’ dysfunction of late, I’ve noticed a certain pattern that shows that the old model is severely out of date. Sometimes when Dad is out doing what he feels is expected of him–providing for his family financially–Mom is just not living up to her side of the bargain.

And that’s not fair.

Take the example of a dad working twelve hour shifts a day driving a truck, picking up and dropping loads, even on the weekends, so he makes a steady income enough to pay all the bills in the household. What a man’s supposed to do, right? Or so the 1950s model would say.

But let’s remember the moms in that model–they were home, baking cookies, making sure the children had nutritious meals, cleaning the house, doing the laundry, running the errands, doing the grocery shopping. Taking good care of the children. The REST of the work.

That was the half they picked up as their part of the bargain. Dad, you work hard outside the home to bring home enough money so we can feed the children and keep them safe and warm; Mom, you put that money to work and devote yourself to carrying that task through.

But for a lot of stay at home mothers today, that’s just not how it works. While the fathers are at work, the moms are Facebooking all day.  How often does all that Farmville gardening feed your own kids, hmm? (At least the cases I’ve seen haven’t gone as wrong as this Korean couple, whose real life baby starved to death while they raised a perfect one online.)

Or maybe the moms are drinking all day to escape the children, while the children get into God knows what. Or maybe they’re watching TV all day while the laundry piles up till no one can walk through the bedrooms, and dirty dishes are a mountain in the sink.

Is that really what a hard-working father wants to find when he comes home?

What about the real damage that might not come out for a decade or more? The child neglected by the mother living a “better” life online or texting or partying with friends all day, so that he learns, even at the age of one or two, that the only way he’s going to get lunch is if he scavenges through the refrigerator for a hot dog, or leftovers, maybe, if she’d even cooked dinner the day before.  When he learns that he should steal or hoard food, because he doesn’t know when he’ll eat again (even if he’s now lived in a home for over ten years when he always has food to eat). When he learns to shift and lie and hide to avoid punishment because he knows soon her attention is diverted back to her games. When he learns that nothing is the same day to day, so the “rules” change constantly and he doesn’t have to do what he was told yesterday because now it’s today. When he finds that only his current impulse governs what he does, because he’s not accountable to anyone.

When a father is working a second shift job in construction, a third shift job at a convenience store, and most days of the week, stopping for another few hours in the morning to make donuts to get just a little more money, is this really what he should have to deal with?

It doesn’t seem fair. But it’s too late to undo it now.

Dads who worry about what’s happening at home probably have a good reason to. Please take the time to talk about your bargain and make sure everyone understands what’s expected of them. Take action. Before it’s too late for your children.

Coming down to the end

We’ve been traveling a rocky road with the Captain since mid-October of last year. His behavior reverted to that of a first or second grader and has been on a hellish cycle ever since. He’s been suspended from school several times, each infraction a little worse than the last, when he said one of his teachers should be shot.

Even at home, his behavior that we’ve worked to modify under the scheme the therapists gave us many years ago (under Parenting with Love and Logic), acknowledging that his birth mother had left him with reactive attachment issues, * has gone south. He’s surly, uncooperative, passive aggressive and sometimes outright aggressive.

We had a long conversation the other night, just the two of us, where I let him say everything he wanted to say, ask all the questions he wanted to ask (you want to know how many ways I can explain why Dad and I get to make the rules and he doesn’t? A lot.) and the bottom line, what we concluded at the end was his assertion that he was going to continue to ignore our rules until he proved to us that we had to respect him enough to let him do what he wanted.


Fortunately or unfortunately, I guess it depends how you look at it, the school misbehavior has gotten serious enough that they’re looking at alternatives for him. Their suggestion at the moment is to send him to a partial hospitalization program over the summer, with intensive therapy and med management to hopefully get him under control before we’re back in school again.

Informal discussion with some of our long-time therapists yielded the conclusion, however, that we’re not going to be able to get the serious help he needs without A) spending $10,000 out of our already stretched budget for RAD therapy when he’s determined not to change or B) waiting until he actually hurts someone, and letting the corrections department deal with it.

How could we be in this place?  No parent should be here. Not after providing the child with years of all the alphabets, good food, good health care, opportunities, encouragement…. it’s heart-breaking.

So, because at 14, children in this state can decline treatment, we wanted to make sure before we tried this summer program that the Captain knew we meant what we said. So I explained to him that we found this program to help him conform to basic expect human behavior for someone his age, and while he could opt out, it wouldn’t be what he wanted. If he doesn’t attend the program, I said, then he needs to pack a suitcase and call whatever relative he thinks will take him in. (Not many, based on our informal survey.) We can’t take the risk any more.

I hate having to choose between the children. But sometimes, I guess, you feel you have to save the ones you can.

* Yes and don’t start about how the DSM-whatever says you can’t be Aspie and have RAD. You clearly can.

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.