What do you need?

Some days it’s as little as an understanding smile. Others, it’s a referral, recommendation or a helping hand. What would you like someone to do for you?

Coming up for air

This title of this piece has multiple meanings, one a literal application to the many aquatic stars we saw last month at the Georgia Aquarium, but another just in trying to sort 0ut a life gotten much too layered and complicated to handle.

Kind of like sorting out the complex layers of African cichlid existence in an underwater river setting, our lives at this moment have trails shooting off in all directions. Some of them are quite positive: Little Miss has really settled into eighth grade, supported by a fine AS teacher, and enjoying half a day of classes with her peers. She has also overcome many of her sensory issues and had taught herself to sing and dance AT THE SAME TIME while she’s using the Wii dance programs. Who would have thought it, five years ago or especially ten? A lot of hard work on all sides. Well done.

Dr. Doo-be-Doo has matured significantly as he’s moved into high school age, making some of his social interactions rough, but not more so than a good proportion of other young men his age. He’s found a gaming club to join to stimulate his imagination, and has become involved–even auditioned–for the local Meadville Community Theatre Youth show in March, which makes his father and me both happy. We’ve met so many nice people through there, and we know this will be good for him.

Both kids have improved their grades, their social interaction and their grip on this world. We’re very proud.

Having an exchange student has helped a lot, I think, showing what a “normal” older sibling would act like. Because Yurie is from Japan, she’s used to a more standoffish interpersonal mode that works fine in our house with the spectrum kids. Everyone has plenty of time to work solo and not be overwhelmed by the others.

The other part of it is, of course, while we’re not having our lives sucked into oblivion dealing with the Captain’s apparently incurable issues, we can actually interact with the others in a pleasant way and build good relationships.

Which is why, when the therapeutic foster care people threw up their hands after 18 months of treatment that had achieved exactly zero because the Captain thinks therapy and learning coping skills is “stupid” and he has no intention of changing anything about himself, we came to a crisis decision.

With the sharks circling, and the county’s plan to send him home, completely unchanged other than to have gained new manipulation tools and catch phrases from the therapists, what to do? We went through an escalating four years of hell before he was placed. We asked for help from agencies, doctors, respite people, family members, and followed every lead we got. He still continues to have no accountability or take no responsibility for his acts. He’s not sorry about anything. I honestly wouldn’t be surprised if he turned out to be a Newtown-style shooter, especially since he has confessed that the reason for all his transgressions is to get attention.

And their best suggestion is now to send him back here, unrepaired and they’d toss six hours of therapy each week the family had to endure KNOWING that the Captain will have none of it?

No. No thank you.

What this means is personally humbling for me, of course, because the only other alternative is to release him into the Children’s Services system. Ironic that this is where I work every day, representing other parents whose children are abused, and neglected. Those caseworkers are now going to have access to information about my personal life and the right to dictate what we’ll do. We’ll likely pay child support to the state for keeping him in care, even though his placement there is entirely of his own doing. A humiliating ten months left until he turns 18 in December 2013. But I’ve cleared it with my boss, and he understands exactly what we’re up against. He supports me.

There’s always a possibility that the Captain will see the error of his ways, especially mixed in with the general CYS pool of placees, and realize all he has to do is make a real change, not just a plastic one.

But I think taking him in before we’re sure of this is no different than wrapping ourselves in jellyfish tentacles, so pretty to look at, but deadly and continual poison injections into out lives thereafter.  He’s admitted in the last two weeks that he did so much of the stuff he did to punish us and to get attention. And he hasn’t worked through one whit of it. He stands just where he was after he’d lived in our house locked in his room at night for eight months, after he lived outside in a tent for two, and after 18 months in therapeutic foster care.

As much as we care about him and want him to do well, we also have to look at the big picture.

We have saved the other two. Years of TSS, occupational, physical and more therapy, testing (Little Miss is off for another round in Pittsburgh next month), daily, constant prompting with any medium available. Perhaps that’s all we can do. The decision’s been hard, but now that it’s been made, it at least feels right.

So we’ll see what the rest of the year has to bring. E is expanding his teaching, enjoying it. I’ve got six novels coming out in 2013, after 6 in 2012 as well. Still practicing law, so we’re coping on a daily basis. Absent a magic wand or some potion to make the Captain see his way clear to wanting to be a helpful, cheerful, determined member of the team and working to get there, I don’t see what else there is. If the family falls apart altogether, maybe there’s a possibility of splitting the kids in some sensible way, where he can come out of foster care. But if the family falls, I fear for the well-being of everyone. We can’t let this one link break the chain. I hope. One month down. Everyone fasten their seatbelts for the rest of the ride.

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. 🙂

Drugs are bad, so…let’s give him drugs?

In an effort to greenify our world a bit (and uncomplicate our lives) we decided it was  time to try a local doctor to prescribe Doctor Do-be-do’s ADD meds, instead of making a seventy mile round trip to Erie every other month. We made an appointment for him to see the same local psychiatrist  Little Miss sees for hers.

I guess I’d forgotten how that doctor was. After all, he prescribed talk therapy for her to get into her feelings about having autism and how that depressed her. Seeing as she operates on about an eight-year-old level, with delayed language and is about the happiest person I know….right. No sense at all. How could I have forgotten?

The morning of the visit comes, and the boy drops into the chair at the psychiatrist’s office, hunched over inside his hoodie, as he’s wont to do. Eleven year old boys. What can you do?

The psychiatrist starts talking to him, and the boy starts on this very interesting tale about how he never plays with his sister or brother (false), that he hasn’t any friends at school (mostly false), that he never talks to his parents about anything (oh, really?), and so on, for about thirty minutes. I tried to gently correct him a couple of times, but the psychiatrist kept giving me the stinky eye, so I backed off. We just came for the ADD meds. If the doctor wants to analyze the kid for fun, let him…

So the interview gets done, and the first thing the man says is that he really shouldn’t give him the ADD meds: Amphetamines aren’t any better than alcohol or any drug that allows one to hide from one’s feelings and pull away from other people. Because the child self-reported his isolation, he really shouldn’t get the chance to have the drugs at all.

BUT.

As long as the child was reporting this isolation, and he was lonely, it would be an awfully good idea to put him on Zoloft. He handed me a prescription for that and also something to make him sleep at night.

What??

I looked the doctor in the eye and calmly explained the boy needed the ADD meds to be able to get through the school day. Four-fifths of our household functions better on those chemicals, I said, and he really needs an increased dose because after four years the minimum dosage is wearing off before the end of the school day.

He grudgingly gave me enough till the end of the school year.  Then we have to meet again.

Let’s face it, I’m not one of those people that wants to tranquilize their child into submission. We’ve experimented with a number of different ways to help the family members do better, vitamins, fish oil, minerals, diet, holding off on chemical intervention as long as possible, but the fact remains that we are ADD-infested, and some sort of medicine helps school and life performance. The Cabana Boy reminds me all the time how much better he functions when medicated, and Little Miss is the same way. What she retains is significantly better, and her thought processes are obvious in their clarity. Doctor Do-be-do is the same. (The Captain just won’t take his medicines, so we’ll leave him off the list.)

So. Now the psychiatrist wants the family to come to therapy, and gives drugs the child doesn’t need and fights us about the drugs he really does.  I understand this line of thinking–When one of my older daughters went to see a mental health professional some years ago, I was incensed that they just threw medicine at her, and didn’t offer her therapy, which is likely what she really needed. I know the doctor was practicing good medicine by interviewing the child–but maybe a quarter of what the child told him was true! And he didn’t want to hear the truth from me.

So do we go back to the old doctor and conduct the simple medical transaction, or do we go with the guy who wants to give an eleven-year old adult depression medication? When the professionals can’t even agree, what’s a parent to do?

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.

What?

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

Man.

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.

The wide, wide world of sports

One of the suggestions we got from the autism whisperers back in the early days was to see if we could get the Captain involved with sports. You know, the theory being that if he was really good at baseball, then the other boys would let some of the other strange behavior slide.

That was, of course, before they saw the Captain play sports.  Or…not play sports.

Sadly he and Little Miss have some fine and gross motor issues that make it difficult for them to really play well. She’s better than he is, but still it’s just not a happening thing.

The Captain does have some creative and dramatic skills that have received approval from his classmates when he can tolerate company long enough to complete a group project. Little Miss has gradually become more friendly over the years, and while she won’t have a discussion on fashion or boys any time soon, it’s thrilling to hear her ask one of us, “What did you do for your day today?” and really listen to the answer.

So our humble athletic aspirations are concentrated in Ditto Boy. He has a limitless supply of energy, and when his attention can be focused, he can be quite the court warrior.  Though he’s a little short, he works hard at basketball.  He played on intramural volleyball last winter. He likes swimming, too.

This summer he will be part of a special ADD curriculum that will be taught by our wraparound agency, which up until now hasn’t had any services that would suit him. They have a sports-based alternative that works on a points/rewards system, where the children in the program will have to keep control of details in whatever game they’re playing, so that when they are called on, they know, for example, who scored the last point, or how long there is left to play, or what the current score is. The director said it’s supposed to have a 66% improvement rate.  Now wouldn’t that be something?

In the meantime, we bought a heavy plastic horseshoe set for the yard.  The Cabana Boy went over all the details of the game at great length, how not to stand where someone was throwing the horseshoes, how to keep score, how to handle the horseshoes themselves, and so on, including every possible safety measure he could think of.

We replaced the little plastic pegs they used with larger sticks, in hopes they’d be able to hit the horseshoes more often.  Explaining how they could run up to the stick, but not past it, Dad demonstrated how to toss the piece to the other pole.

Ditto Boy, very excited indeed, grabbed up the set of horseshoes and went to run for the pole, prepared to toss them.  Just before he slid into the pole with his crotch.

Maybe it’s time to think about volleyball again.

It’s a small world

Back when I had my first round of children, I had great dreams for them. I just knew they’d be concert pianists or famous actresses or….who knew what?

The days and weeks and months and years passed and they did many wonderful things–got awards, graduated from college, produced healthy children. These accomplishments were duly noted and applauded. They may not as been as significant, on the scale of other children I knew, who were being accepted to Princeton, or competing in national music events or starring in every community theatre production, but I didn’t push them, either, the way some parents do, to the brink of breakdown. It was all right.  They were happy and healthy and content.

What we look for now (and I notice it often in other blogs of parents of autistic children) are small things. Actions that demonstrate mastery, or maturity. It IS all about the small things.  Like:

*This week when I made a grocery run, we left the groceries on the table when I got home because there were several other imminent tasks, like getting the laundry off the line and sending the boys to the shower. When we came back Little Miss had put all the groceries away. No one had asked her. She just knew that’s what had to be done, and did it.

*Little Miss left her spelling words at school, and though she teared up as usual when she’s frustrated, she suggested instead that she could spell out ten country’s names. And she did. (Initiating a solution to a problem!!)

She really has done better on the ADD medication, and the advances she makes seem to stick longer and lead to more conversation/understanding/accomplishment, even after we’ve discontinued her wraparound therapy.

These are small things.  But we’re just as grateful as if she was a first row violinist at Carnegie Hall. Brava, my little one (who at 9, is nearly tall as me!)!  Brava!