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.

DSCN0132Kind 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.DSCN0074

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.

DSCN0091With 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.

DSCN0055There’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.

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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.

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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. 🙂

Great migrations

No, no, not the National Geographic kind.

The kind we families with services experience about twice a year, when our special kids finally start making a bond with their TSS or MT or other wraparound therapist and then that therapist moves on to brighter pastures elsewhere, at another agency that you’re not approved for.

I don’t blame them, of course. The therapists get opportunities for better jobs, better benefits, better wages in a field that doesn’t pay much to begin with, so you and I would be right on that bandwagon too.

All the same, when our kids have a condition that everyone agrees requires the greatest amount of structure and routine that we can arrange, don’t we worry that the constant turnover in (particularly) TSS workers isn’t in their best interests?

I wish that agencies could have their people sign some sort of clause that makes them agree they’ll stay around for at least some sane period, six months, a year, in order to get the job. (Wait, Miss Lawyer, wouldn’t that be involuntary servitude? I think if you’ll check all those law books on your shelf there, you might find it’s illegal…  oh yeah.) But seriously, if an agency is going to put in time and energy to train someone, shouldn’t they have to stick around for some period of time?

Sadly, most agencies, at least in our area, are desperate for TSS workers to keep up with the community demand, so they’re not in a position to bargain much, I suppose. Having bodies to send out to work with the clients is important.

But encouraging children who already have trust issues to trust workers and bond with them, only to have to change a few months later? This reminds me of the situation I have with many of my family law parents, who parade a host of new boyfriends/girlfriends before the children, letting the children bond with the new friends, then kicking them out. The experts say these children will learn not to get close to others, even future partners, wrapped up in protecting themselves from the remembered hurt of potential loss.

It’s just sad to see it happen, during the seasons of the great migrations.

 

Thanks to photographer Royce Bair for use of this photo.

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.

That headache time of year

No, I don’t mean allergy season, though that certainly would apply. I mean summer, and its attendant crisis-level situations about what to do when you have two working parents, special needs children, and services to arrange around family demands.

We’re all busy. Even without the challenges I know a lot of you parents have of getting kids back and forth to sporting practices and events, we have been run pretty ragged by the schedule of services we’ve received in years passed. (Sports are right out. For a number of reasons.)

The first year of our diagnosis we had to deal with TSS and social groups for two of the children, all provided by workers who didn’t drive. So we rushed here and there.

For several years thereafter, we had summer camp 35 miles away for the two kids with autism, and made the trip twice a day.

Ditto Boy was jealous the others had a special camp, of course, so he was signed up at the Y, so he had plenty of activities.

In addition to the weekday events, of course, we had to find time to have time away as a family, and also time to visit grandparents in South Carolina, so we had some respite. For the majority of the year, there is no respite, and with the way the Captain has been carrying on this spring, it’s hard to find anyone willing to take him, even for a short time.  So at 13, when he should theoretically be able to watch the others for an evening so we can go out, he’s the one of the three that needs a babysitter the most.

We found a relative who will keep the Captain for a month, but can’t do any transportation for the visit. So it looks like I’ll be driving to Montana and back (no way I could put that boy on an airplane alone!!) to drop him off, and hopefully a friend will be flying this direction at the end of the month and accompany him.  Two weeks out of my schedule just for 30 days of peace.

Trying to work around grandparents’ schedules is hard too. The schools are on different calendars; they start in early August, while we don’t go till September.  And with their need for continuing ed and so on, we are limited to a very small window–actually exactly the time that I had planned to drive the boy out.   Which would mean not only would the children miss out on a vacation across the US, but there would be no respite. But it at least frees up Little Miss for her ESY program.

So we regroup and regroup and regroup. And reach for the Excedrin.

Tunnel vision

Our life with autism has been steadily heading toward a dark tunnel, and I’m afraid the train is about to arrive.

While Little Miss seemed to be coming along so well up till this year, fourth grade has made it clear that she has real issues I’ve written off to language delays or other “fixable” things. We’ve had to come to grips with the fact that despite the help she gets at school and TSS/BSC services, one of two things is true: either the language help that she needs just isn’t available in this area, or that she really is limited to practical knowledge that will enable her to care for herself, but she’ll never be an academic scholar, no matter how smart she is.

That realization, while heartbreaking, pales next to the other situation. The past few weeks have made it clear that The Captain’s world cannot be moved by anything but his own impulsive desires. He does what he wants to do when he wants to do it, despite the rules and without regard for others. Earlier in the year, these incidents were limited to school hours, and we thought the “experts” could deal with that. I mean, despite our requests not to have an aide assigned so that he could learn to take care of himself, they put one with him. Seventh grade with an aide all day long. Not geared toward making a boy gain a lot of friends. But, again, we thought as long as the incidents remained at school and he continued to follow the rules at home, we could go on.

This week, however, in a remarkable display of just where his head stands, we’ve discovered that he is near sociopathic. He acts without regard for consequences and how his actions will hurt others.  As we peel back the layers of “what if,” we can envision some truly horrifying results, especially with an impaired sibling who’s coming into her own puberty issues.

When his mobile therapist came this week, we had a long talk. She reminded us at length that this is part of the Asperger’s diagnosis, while she reassured us that we’ve been doing all we can to help. She had a long talk with the Captain. Then she quit.

Part of mobile therapy, obviously, is the same drive that is part of helping an alcoholic: the patient has to want help and be willing to admit things aren’t as they should be, and be willing to make changes.  She says after nearly seven months with her, that’s just not happening. Perhaps he can’t process and assimilate the information, or else he can’t apply it. She believes, as we do, that he chooses not to. This after eight years of TSS and mobile therapy, sometimes at 35 hours a week.

So we’re heading into the tunnel, with a very small number of alternatives available. The therapist suggested respite, but there’s no one that will step up for that in either family, not for long enough to make a difference, anyway. Until he actually hurts someone, none of the facilities around here will be interested–we’re not sure we want to wait till that happens. Certainly, we’re open to suggestions. Got any?

Helping the Helper

One of my peeves has always been that many of my clients think when they have wraparound services, they are now in mommie heaven. The problem children are taken off their hands, and they can just search their homes for bonbons, if the little critters haven’t stolen them already.

The peeve carries over to the workers. No question they have a hard job– going into strangers’ homes, many of them less clean than you’d like, maybe lice-infested, to deal with kids who may not have been raised under the best of circumstances. Often they just “babysit,” give the kids a break from a bad home, take them for ice cream or to the library or other things the parents just don’t do. Works for the parents, and apparently it works for them. I bet the kid feels better, too, when someone’s paying one on one attention to them and buying them nice things.

But that’s just not the situation here. We keep our house pretty clean, we have what we need and we actually pay attention to our children, especially the ones with issues. (Probably we govern them with too tight a grip–but that’s a subject for another post.)

The Captain’s mobile therapist has come several times now, and most of them have been afternoons I’ve baked granola–she’s so amazed we have real food. Home-made, even. Little Miss’s TSS and BSC have come several times, and all they keep saying is, “Wow, she does so well! Our other kids aren’t anything like this!” The TSS was surprised we’d done homework with the child before she came; apparently in her other families, that’s left for the “babysitter.”

So we’re working through the new relationships. The TSS is supposed to focus on language development, pragmatic and receptive speech–so she brought a word search page where you had to search for six-digit numbers. I asked her what the purpose was for that, genuinely curious, and she said it wasn’t therapeutic, but something she knew Little Miss would like. Except of course, she didn’t do it fast, being very meticulous, and then the TSS wouldn’t let her finish it–a major issue with her. She has to work things beginning to end before she’s ready to let go. It’s all over her file. So there was some grief about that.

I tried to stay out of the room at first, because I wanted them to get to know each other and build a rapport without me. But I drift in eventually, and they’re going over some category association cards, and some question and answer cards that headed in the right direction. So it was all okay until Little Miss asked if she could play with play dough (also home-made).

The TSS agreed she could, and she got it out, with her Bob the Builder set that has molds inside little houses and so on.  We were all three playing, and talking–Little Miss was telling the story and answering questions, doing very well–and when Little Miss gathered it all up into a ball about eight inches in diameter, I said, “What would happen if that came rolling down the street and crashed into the house?”

She laughed and played that out, knocking the house sideways. Then she set it up again, and held the ball overhead. “Or like this!” she said, and dropped it on the house from above. That inspired smiles and giggles all around. I asked her, “What would the people do in that house?  What would they say?”

She considered a moment and nodded thoughtfully. “God damn it!” she said blithely, and she pulled the dough off the doomed house.  “Then they would call 911.”

Meanwhile, the TSS and I are laughing so hard we couldn’t reply. Little Miss went on telling what would happen when firefighters arrived and so on. And somehow I had the feeling the TSS thought perhaps Little Miss’ s language development was coming along just fine.