Pomp and circuses

Today Doctor Doo-Be-Do ‘graduated’ from his first summer therapeutic camp for ADHD kids. He won the award for “The Funniest” child, and punctuated that when his name was called and he got to the stage with a flourish and a bow. He got his laugh. Good for him.

Did the six weeks make much of a dent in his attention issues?  Certainly not the 65% the counselors were tossing around before we signed up. But the experience was good for him, a chance for him to shine without either his brother or sister slowing him down or getting in his way. They played sports every day and concentrated on social skills, sharing, not whining and complaining, and giving lots of points if he was paying attention. Which wasn’t often.

The model was fascinating to me; basically each day involved classroom work as well as plenty of activities, during which campers earned points for knowing what was going on and lost points for complaining, not paying attention, arguing, acting out, etc. At the end of the weeks, several really great field trips were planned (destinations secret) for those who had earned enough points to go.

But having been there for some of the weekly parent meeting and seeing the madness that ensues when you add some 40 little people with ADHD issues all to the same location…. I have got to add a special “Hallelujah! and Amen!” to all the counselors and staff.

Little Miss went with me, and created a permanent record of the event, as I’d forgotten to bring the camera:

 

Now those happy faces say it all. 🙂

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When passion doesn’t pay

Regular members of my readership club will note a drop-off in post frequency, and I apologize for that. I have been distracted by…dare I say it?

Life.

As if Little Miss and her PMS isn’t enough, we have been wrestling with the Captain’s behavior, which looks like it will now be handled by partial hospitalization over the summer, with strict attention to behavioral issues. Dr. Do-Be-Do has also begun exhibiting angry outbursts and lackadaisical behavior toward assignments and teachers that is very unlike him and somewhat frustrating; these, hopefully, will be the subject of work at his therapeutic camp for which I’ve finally completed the intake. 

Add to this an overhaul of four rooms of our house, including a complete ceiling replacement in the 30 foot by 20 foot kitchen and the bathroom flooring, the decor switching from warm-colored Moroccan grotto to stark cream and cherrywood Victorian/steampunk. With a hint of Firefly, as we add some Chinese touches, including a fabulous Chinese cabinet I drove to Asheville to retrieve this weekend, with Little Miss as my co-pilot.

My secretary has essentially vanished into her other job; I’ve seriously got to consider replacing her, but the thought process has been too painful. I’ve muddled through on my own, and the Cabana Boy, bless him, has put me on the volunteer list to take interns from his business school, at least to tide me over.

My passion has been with none of these things. My passion has been in The Elf Queen  and her forthcoming series of novels and their promotion and writing. My passion has been in the month-long spree of daily contact with writers and editors that was CoyoteCon. My passion has been in associating with an editor at a romance press who loves my work, though I haven’t sent her anything that exactly fits her line–she’s now assigned me a novel to write for a special series, and I’m fleshing out a story for that.

My passion has found me five editors in the last thirty days who have requested to see full manuscripts of mine, and are reviewing them as we speak.

My checkbook, however, is reminding me that somewhere along the line, all of these things are extraneous to the business of paying for our lives. So the stack of bills here must be attended to.

With any luck, we’ll be back to passion soon. Stay tuned…

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?

When The Answer isn’t enough

So we go Tuesday to Watson, half holding our breaths, waiting for the experts to tell us The Answer.

And the Answer is: Sorry your kid’s broken, sucks to be you. You shouldn’t hold him to such a high standard because he’ll never reach it. Make it easy on yourselves.

What a crock.

Not that they didn’t try. Maybe if the Captain was still five and this was a first visit, a first diagnosis of Asperger’s, ADHD and Oppositional Defiant Disorder, and we hadn’t already tried just about everything we and the other therapists could think of, it wouldn’t be so disappointing.

The funny thing, looking back on the hour meeting, was how upset the doctors seemed to be that we weren’t ecstatic that we had the Answers in our hands.

I mean, to be fair, there were Answers. Some 30-plus recommendations of things to try. But so many of them were like, “Hey, teach the Captain about the ‘Stop,Think, Do’ protocol.” Really?  You think if it didn’t work in first grade, second grade, third grade, fourth grade, fifth grade, sixth grade, seventh grade and now eighth grade, that next year it will magically work?

The tests revealed that the Captain has good executive functioning and understands theory of mind well. I shared that with the school psychologist who has dealt with him for seven years, and her comment was, “He has NEVER been able to do those things. Ever.” The recommendations are for him to be in a social skills group. As the psychologist said, he was in them for five years and never internalized a crumb. So…what does this mean???

We had to laugh when the doctoral candidate who did the screening shared how she had just said, in a conversational interlude with the Captain, that one of her pet peeves was people cracking their knuckles and THE NEXT THING he did was start cracking his knuckles for the rest of the session. Oy. Welcome to our world.

And the fact that he tapped “Axel F” through the day. On the table. All. Day.

So we will share copies of the 30 page report with the school, the counselor, the wraparound agency and see who thinks they can help. Good luck, folk.

Another thought that’s crossed my mind is to sit down with the Captain and find out what he wants us to do. Since we seem to be much more invested in making him live up to his potential than he is, maybe we’re just ruining our own lives. If he really doesn’t intend to make any effort over the next four years, then should we really beat ourselves up and spend hours at medical offices trying to make him better?

When is a young person able to make these decisions? According to Pennsylvania law, “Minors ages 14 and older may consent to outpatient mental health examination and treatment without parental consent or notice.” So he can opt out any time, I guess. (Not that I’ve told him about this provision, of course. But someone will at some point. Then he’ll club us to death with it.)

And someone call Fox Mulder. Because the truth–and the Answer, apparently–is still out there.

Into the big leagues

In our rural neck of the woods, we’re pretty fortunate in terms of autism diagnosis and treatment options, first because of the medical card loophole which means that wraparound services, among others, are covered by the state, and second because most communities have autism-trained wrap programs. Up until now, we’ve been able to treat within a 30-mile radius.

But the Captain’s ongoing saga has finally driven us further afield. None of the medications seem to be having an effect and there are still multiple infractions at school and home each week. As the school psychologist said, “There are always social concerns with Asperger’s kids but they are capable of internalizing and learning appropriate behaviors-especially when they are as bright as he. Typically, as they get older, the Asperger’s tends to fade some. He is getting worse. I could be totally off base here but I have been thinking about it a lot and, with the efforts that have been put forth at home and at school, there is something else going on.”

So this week we went to Pittsburgh to the Watson Institute, which has quite a reputation for diagnostic programs, to see what else is going on. We spent an hour and a half with a psychologist and her intern going over the 19-page intake packet and other documents they’d requested we send, fleshing out info they wanted to have for testing purposes. Next we’ll go back for a full day of testing for the Captain, as they look at the Asperger’s, ADHD and attachment disorder possibilities among others. Who knows, there might be something brand new in the picture none of us have considered!

Once that’s done, we have to go back for a review session to go over the testing results. I told them that if we need to treat in Pittsburgh to be successful that we certainly would. 200 miles roundtrip is a lot, but hopefully we wouldn’t have to do it often. Pittsburgh is a pretty cool place; we’d just have to make it a family outing or something. But they seemed to think we could bring the results back here for our wrap people to implement. Either way. Just so progress is the upshot.

This and the unavailability of respite is taking a lot of our mental stamina. But we’re hoping to see through this to a more positive direction soon, perhaps as soon as the turning of the year.

We continue to focus so that both of the other children are able to have our attention as needed, and they seem to be doing well. Dr. Do-Be-Do has finally matured into an understanding that teasing can be gentle and loving instead of hostile, and his quick temper has faded. Little Miss is moving into regular conversation modes, initiating conversations and breaking into others’ conversations with relevant questions and material– a big step from never responding unless skillfully questioned. In with the good, out with the bad, that’s what we say!

Will they come for you, too?

I’ve been gone for the holiday and apparently missed the hubbub about Alex Barton.

For anyone who’s not in the loop on this, here you go: Alex Barton’s story. Basically, a kindergarten teacher played Jeff Probst and let her 16 students vote one of their classmates out of their class–after they each got a chance to openly level ‘charges’ at him, stating to this five-year-old still in diagnostic process for ASD all the things they didn’t like about him.

This is all after he was sent to the principal’s office for appropriate discipline. The teacher, Wendy Portillo, took it on herself to humiliate the child further when he returned, and forced the children to denigrate their fellow student. She admits this happened.

Alex apparently screams now when he thinks he has to go back to school, and he hasn’t returned. Who could blame him?

His mother attempted to file police charges for emotional child abuse, but they were rejected by the state attorney’s office because they didn’t meet the criteria.

All of us with diagnosed children have days when we worry about how our child’s behavior will be viewed by whatever educational institution he or she is assigned to. Granted, we know they don’t always act like everyone else. That’s why we have IEPs and other documents that force the schools to treat our children fairly, taking into account whatever issues they might have.

But the rest of you shouldn’t sit back, complacent, thinking this can’t happen to you. Anyone have a seven-year-old boy? Think about those wild and wacky behaviors and the antics boys en masse can get up to on the playground. Think about the way girls are dressing “sexy” even younger and younger, and how even kindergarteners now have their own “Mean Girls.” Think about children in wheelchairs. Children of Latino heritage. Black children. White children. Children. Children in school to be educated about everything, including the differences among us.

It would be well to remember the words of Pastor Martin Niemoeller, very apropos, here modified by me to provide a jumping off point for discussion:

In our school they first came for the AIDS students,
and I didn’t speak up because I didn’t have AIDS.

Then they came for those on the ASD spectrum,
and I didn’t speak up because I didn’t have autism.

Then they came for the hyperactives and those with bipolar,
and I didn’t speak up because I didn’t need medication to participate.

Then they came for those of different skin color and heritage,
and I didn’t speak up because I was a white student in the majority.

Then they came for me —
and by that time no one was left to speak up.


Interview with Alex’s mother

For more support for Alex and his mother, see this. For thoughtful reflection on avoiding this situation with your own child, be reminded here.

And yet another good take here, on tolerance for teachers who cope with an awful lot on a daily basis.