Well this explains a lot...or not

I thought when I saw this info from smartkidswithld.org that maybe it explained some of Dylan's ADHD, beyond the paternal genetic link:

Late Babies At Risk for Developing ADHD in Early Childhood

For years scientists have warned that premature birth is a risk factor for behavioral and emotional problems, but now researchers are suggesting that overdue births may present similar challenges.

Results from a recent study published in the Journal of Epidemiology found that children born more than two weeks past their due date were twice as likely as term children to develop problem behaviors—especially ADHD—in early childhood.

While researchers were quick to note that further study is needed to understand the causal relationship between gestational age and ADHD, they were able to exclude certain variables such as mother’s height and weight, income, education level, ethnicity, alcohol and cigarette use, and mental health during pregnancy.

Instead they hypothesize several possibilities to explain their findings: larger babies have increased risk for birth-related problems; post-term placenta provides less nutrients and oxygen; and late-term births are more complicated than term births.

This particular study is one component of a large population-based study in the Netherlands that is following a cohort from fetal life to young adulthood. For this effort, researchers surveyed the parents of 5,145 babies born from 2002 to 2006. Participants were sent standardized, validated questionnaires when their babies were 18 and 36 months old. Results at both questionnaire intervals showed a U-shaped pattern with preterm and post-term babies at greater risk for behavioral and emotional problems. (link)

Dylan was late - induced at 42 weeks and still not eager to come out.  But he had none of the other markers they discuss:  birth-related probmes (we had none) and a more complicated birth (beyond the lack of desire to come out, the birth was complication free).  The placenta providing fewer (did they have to use poor English!) nutrients is a consideration, though.

It changes nothing.  ADHD moms constantly seeking causes and solutions have to remember that finding sources changes nothing.  And we/I have to avoid second guessing decisions that seemed good at the time.  

The Smart Kids with LD site is great!  Their blog newsletter is wonderful, sent only when there's worthwhile news.  The site is laid out well and provides information for a range of learning deficits and does not treat ADHD like a step-child. 

Encouraging perseverence

Dylan started Kung Fu just about a year ago.  He had long wanted to do some sort of martial art, but I had dragged my feet.

The cost.  The time.  The cost.

Kung Fu got in through the back door.  He "won" a free month by stopping at a booth at a festival.  (I think everyone who filled out a card "won" a free month.) So I let him do it for a month and one month only.

A year later and he's still going.

It's actually been a wonderful thing.  I'm sold on all of it.  I like the physical aspect.  The mental aspect.  And the spiritual aspect.

Ideally, I'd like to see it train him to be more focused, more accepting of himself, and more goal oriented.  But at the moment, I'm having a hard time even getting him to go.

When I pick him up, it's the same thing: "Can we skip it, just for today?"


I bet you can hear the whine.

I guess I'm somewhat of a hard-nose because I almost never let him skip out. Today, he was hot.  Yes, it's summer, it's New Orleans, it's hot.  Other days, he's tired.


Most days, I think he just wants to go home and watch TV. (More on TV another day.)


He used to love it.  He used to want to skip homework in order to go (lesser of two evils?).  He was so eager to move up to the next sash.


It's been a while since he's moved up, which might be part of the problem.  But in general, for him and maybe for lots of kids with ADHD, it's hard to encourage perseverance.  That's bad enough for Kung Fu; worse for schoolwork.


Recent studies show that tenacity has a greater impact on achievement than intelligence - a challenge for kids who have a brain-based deficits in these areas.


So how do you encourage perseverance? 

The Medication Dilemma

I really believe medication has helped my son. Like ALL parents in our situation, we struggled with the decision to medicate. No one – NO ONE – likes giving their child medication, especially something that you know is a stimulant. We had sought a diagnosis after a school year that had grown progressively rougher. Homework, in second grade no less, was a nightmare. Whole evenings were given up to it and they were unpleasant for all involved. There was an incident at school where Dylan crawled under a desk and wouldn’t come out because he didn’t want to do the assignment. Nothing about his relationship to school felt right.

Even without school and homework, Dylan was a tyrant. It literally felt as though there was NOTHING we could say to him that would elicit a positive response. Everything was fodder for an argument and a meltdown. I began to dread evenings. Something was definitely not right.

Dylan struggled with friendships. He had a hard time keeping friends and those he had, he bossed around until they didn’t want to be around him anymore. Every slight was a cruel blow to his feelings, according to him. He couldn’t handle anything that didn’t go just exactly to his idea of it, and his ideas were extreme. This didn’t seem like typical behavior.

Even with all that, even after the diagnosis, we weren’t convinced about medication. But after a particularly rough evening of yelling and angst (on both sides), RockStar turned to me and said “When is he going on medication?”

I do not regret starting meds.

Since then, we’ve tried several, which is not uncommon. His first medication wasn’t even a pill; it was a patch. I don’t remember the dosage he started on, but I think he got up to about 30mg on the Daytrana patch. It worked adequately, but not great. We saw improvement, especially in behavior, but not enough in school attention. After about six months, we tried Metadate CD.

The first month or so on Metadate was heaven. Heaven! Homework would be done when we picked him up at school. He was focused and a pleasure to be around. We thought we had found nirvana!

I don’t know what happened, but the super effects of the Metadate began to taper off. Homework wasn’t getting done at school. His teacher reported he was less focused in class and the teacher wasn’t sure what he was retaining and what he wasn’t. Weekends, when we didn’t use medication, were even worse. Major meltdowns over trivial stuff. We began medicating on the weekends, but there still seemed to be a gap – a difference between what we had seen was possible and what we were experiencing. There were lots of battles over homework, questionable grades, and frustration from teachers. We briefly switched to Vyvanse, but the rebound from it was awful so we went right back to Metadate. We thought about upping the dose or trying something new, but since the school year was almost over, we held off.

That was the first summer of the medication vacation.

It really was a great vacation. Arguments lessened considerably. He actually began eating lunch again. Of course, there was no schoolwork and no homework, save for a summertime school project, which lessened the stress. It was very relaxing.

When school reopened, the meds restarted. He was still on 30mg of Metadate CD, but it soon became apparent that it wasn’t doing much. He was doing horribly in school right off the bat. We had a meeting with the teachers and they thought he wasn’t even on meds!

So we increased it to 40mg. We saw improvement…but again, that heavenly nirvana experience was elusive. We considered trying Concerta and even got a prescription, but he wouldn’t/couldn’t swallow the pill. Homework remained a struggle and grades were uneven. Dylan went into the holiday break with Cs and a D on his report card.

Understandably, we were losing faith in Metadate. After speaking with his pediatrician, we decided to try Focalin after the school break. The doctor put him on 30 mg and to this day, I’m not sure it was the right dose. I think the doctor wanted to start with a lower dose and work up if needed.

It was like he had no medication at all. We tried to stick it out, but I was getting angry notes from the teachers about work not getting done. Homework was even more of a nightmare. We could have tried upping it, but we went back to what now felt like home base – the Metadate. While it wasn’t nirvana and it looked like it never would be nirvana, it at least seemed to have some effect.

By this point, I had read a lot about ADHD and executive function deficits. It was very apparent that Dylan had working memory issues, something that had first been pointed out by a tutor. I tried to get the school to approve him for pscyhoeducational testing to see just what we might be dealing with, but their opinion was that he wasn’t failing so they wouldn’t send him for testing.

Meeting with the Student Assistant Team always – and I do mean always – ended up with them recommending we try different medications or different dosages. Yes, I’m aware that they are definitely not supposed to do that, but anyone who has been the sole parent in one of those meetings surrounded by 8-10 teachers, administrators, social workers, etc. At the same time, I was becoming frustrated by the meds. There were definite side effects.

When Dylan was first on meds, probably for the first nine months, sleep was a major issue. Like many, we turned to melatonin, which really was a Godsend, but it was treating drug issues with drugs. It felt like we were having him take his uppers in the morning and his downers at night.

Eating was a huge problem since Dylan had never been a big eater. I would read recommendations on blogs and message boards to get more calories in him, but few if any were helpful for Dylan himself. Always picky, he started passing on foods he once liked – foods that might help keep his weight up and provide him with appropriate nutrients to help him in school. Eggs were one. I would gladly have made him eggs every morning, any way he liked, but suddenly, he didn’t like eggs anymore. Peanut butter and jam were once a staple until suddenly, he didn’t like that either. I felt as though his food list was getting shorter and shorter.

The only time he was really hungry was when he first got home from school. Blogs and articles suggested having dinner right away, no matter how early it was, but if we did that, homework never got done. So I would make a big snack, so big it was almost a small meal in bite-sized pieces. I tried to get protein in there, but cheese was the only reliable protein I could get him to eat. (Even when he was “starving,” he would be picky. He would also be terribly grouchy when he was hungry and it wasn’t worth fighting over food.

As challenging as the sleep and eating issues were, the picking habits were worse. Most of the time on meds, Dylan would pick at his fingers and toes. This is really a normal habit for him, just worsened by the meds. It’s not uncommon to see him chewing on his toenails. Yes, you read that right. I think he must be double-jointed to be able to do it.

During the worst spells of it, he would worry a bug bite or some other blemish anywhere on his body. A small crack on his lip would become a huge scab in a day. To my complete horror, he would pick his nose anywhere, anytime, to the point of bleeding. The negative social aspect of it bothered him, but it was like a compulsion and he couldn’t stop.

The only upside was that these spells came and went. I think they were related somewhat to anxiety.

By the end of the school year, largely at the urging of the school, we had increased meds to 50 mg, but we weren’t seeing a huge improvement. When we made the switch, I asked his teachers what they saw, but they were vague. This is an emailed comment from his main teacher. Keep in mind that she is a native French speaker:

Dylan has been more focus and getting more done during the day because I have had more individual time with him this quarter and especially this last week….I personnally do not feel that he is more focused on his own

We had also added a “bump dose,” again at the urging of the school, of 5mg of Ritalin. Because we work, the school nurse had to give it to him and the most convenient time (to correspond to when other kids get their bump doses) was at around 1:00pm. It really did nothing to help with homework which was as miserable as ever for everyone involved.

Dylan ended the school year with almost straight Cs. Not horrible, not wonderful. Not, honestly, a reflection of his intelligence or intellectual curiosity.

This summer, I was both anxious and excited about the prospect of taking another medication vacation. Would it be successful? Would he react the same way?

So here we are, three weeks into the summer and three weeks into this latest medication vacation. And it has been wonderful! We’ve had very few arguments and very few meltdowns. When we do have them, they are pretty short lived and manageable. Dylan’s disposition seems to be sunnier.

The only exception has been during testing, when the psychologist specifically asked us to have him on meds. The difference was startling. He seemed so … ambivalent. Unenthusiastic. I asked him about it, about how he felt when he was on the meds and he used the word “gloomy.”

I could easily fall into terrible guilt over this. But I don’t think any of us could have recognized the difference, which came on so slowly. And looking back at how we started and where we were, I don’t think I would have made a different decision.

But at this moment, we are not sure where we are going.

I don’t have any illusions. I know that if Dylan suddenly had school and homework, we would battle over it. He wouldn’t want to do it. He would struggle with it. In fact, I have a bit of a learning program for him for the summer (basically to make up for the things I think he missed this year) and he has pushed back against that.

Would he do worse in school off meds? My guess is that he would. That while the meds certainly didn’t (and really couldn’t) make up for his executive function deficits, they do provide some measure of attention and focus, even if it’s not all of what he needs.

Should we, could we try a different med? Even at age 10, Dylan is still not easily swallowing pills, which narrows our selection significantly. We’ve already tried most if not all of the capsule pills that we can open up.

Of course there’s a range of non-pharmaceutical options, such as homeschooling and neurofeedback, neither of which we can remotely afford. I don’t know of a local private school that specializes in ADHD and even if there were one, we couldn’t afford that, either.

Right now, we have more questions than answers.We await the results of the testing which I hope will give us tools to use, even if it doesn’t point us in a straight line to the path we should follow.

And we have the prospect of an upbeat, relatively gloom-free summer without the pressure of school-based homework. I’ll take it!

The next step in the journey

Parents – especially Moms – want answers.  They want information and facts that they can use to help their child.  They want resources.

Today, we are seeking all of that.

When Dylan was first diagnosed with ADHD, the testing was … limited, in my opinion.  It consisted of one Connors survey filled out jointly by RockStar and myself and a computer-based attention test that took less than an hour.  It was summertime, so we didn’t have access to Dylan’s teachers, and we weren’t able to have them fill out the teacher version of the Connors survey.  Since the psychologist could only find one copy of the parent’s version, we filled it out jointly.

If I got any kind of report, I don’t remember it (and it’s unlikely that I would forget something like that).  The follow up was basically that the psychologist communicated with our pediatrician who prescribed medication.  Maybe the report went to her.

It’s not that the school didn’t believe us.  Dylan had begun having struggles in school the year before and they knew something was not quite right. They have readily agreed to accommodations in writing…but haven’t always consistently followed those accommodations.  Despite knowing that Dylan has ADHD, they have been frustrated by the fact that he often seems to not be paying attention.  (Really?)  They are resentful about how long it takes for him to complete a test.  They have chastised Dylan for missing homework, forgetting to bring books home, and his poor writing skills. 

Anything I’ve said or done in reaction to Dylan’s struggles has been met with a lack of interest at best and dismissiveness and disdain at worst. 

I wish we had a good alternative.  Although New Orleans has seen impressive improvements to its school landscape since Katrina, the school system is not does not present a wide array of positive choices, especially for kids who are bright but struggle.  Our school is also incredibly convenient, located only two blocks away from our house.  It’s also known as one of the “good” schools, one that consistenly ranks highly in the standardized tests that plague our school systems.  Beyond all that, and beyond any challenges he has had there, Dylan loves his school. 

I’m glad that he loves it.  How horrible would it be if he hated it?! The things he doesn’t like about it are things he doesn’t like about school in general – homework, tests, etc.  Anytime I’ve suggested the possibility of looking for a different school, he’s fallen into despair, despondent over the idea of leaving his friends and activities that he loves. 

So I see it as my mission to help make the school a better place for him to learn. 

Meetings with the Student Assistance Team have largely focused on medications, which is actually illegal for school staff to discuss but it has happened nonetheless.  Any concerns I bring forward seem to result in a medical answer.  Perhaps a higher dose?  Have you tried Focalin?  Maybe we can give him an additional dose in the afternoon?

Never have I heard, Maybe we could try teaching him using THIS method.  Or We’d like him to work with an occupational therapist to improve his handwriting and his written expression.  Or even Let’s craft an IEP so we can set goals and chart his progress.

So we are sort of starting over.  As I type this I am sitting in yet another doctor’s office while Dylan is reevaluated and, this time, fully evaluated.  We got here at 9:00am and were told to anticipate that we would be here until 5:00pm.  We filled out two surveys (Connors and BASC) and surveys were sent to two of his teachers.  It’s all a far cry from the single survey and 45-minute computer-based test from two years ago.

I don’t know if all this (expensive) testing will tell us anything.  Our social worker thinks it’s a good idea and at least it feels as though we are doing something.  I’m hoping it will give us something to bring with us this fall.  Something that will help us in demanding more for our son.  Something that will back up what we’ve been telling the teachers.  Perhaps something that will give us just a bit more insight into how Dylan’s mind works, how best to reach him academically, and how to make school a more successful and rewarding place for all of us.

No Child Left Behind: An Oxymoron

The No Child Left Behind Act was authorized in 2001.  I'm sure I didn't give it much of a thought at the time.  I was still a year away yet from having Dylan and, having been a straight-A student, I automatically assumed any child of mine would follow a similar path.

Jump forward a decade and NCLB has our family shaking in our boots.  In Louisiana, Dylan is in his critical LEAP (Louisiana Educational Assessment Program) year.  He took the LEAP tests in English language arts, math, science, and social studies about a month and a half ago.  He, along with the rest of the fourth and eighth grades, will get their scores on Friday, which also happens to be the last day of school.

If Dylan does not score well enough, he will be referred to summer school, from what I understand.  (Never mind that we have necessarily scheduled him for summer camp, which must be done in March or April in order to ensure availability.)

I'm guessing that he would take some sort of make-up test at that point.  If he does not take summer school or does not pass the make-up test, he would repeat fourth grade.

That's right, he would be left behind.

The theory behind NCLB is not bad, it's the execution is horrible.  The act was supposed to ensure that we didn't have kids graduating high school who couldn't read or add.  Changing that scenario was a worthwhile goal.

But giving fourth graders high-stakes tests that make or break their young academic career is insane.  Worse, if after a year of fourth grade they haven't learned the content of the test, they essentially have to repeat the scenario that obviously didn't work the first time.

Summer school, if done right, could make a difference.  If, instead of teaching kids in the same way they were in the school year, summer school teachers approached each child's learning individually and taught in the way that they learn best, it could improve their learning and, in effect, undo an ineffective year of education.  

I wish I had faith that that was what summer school was like.

My other problem with high-stakes testing is that it's entirely unreal.  Very little in the testing program flows naturally with what's covered in class.  The test is dry, vanilla, antiseptic.  Multiple choice, fill in the bubble, pick the right answer.  Supposedly, info in, info out.

At Dylan's school, they had after-school classes twice a week to prepare for LEAP.  Isn't it supposed to assess what they learn in class?  Shouldn't the answers come naturally for most students, if, indeed, the tests measure the curriculum being taught?  Apparently not.

There is a portion of the test that asks more open-ended questions.  This is the part of the test that worries me most for Dylan.  His dysgraphia is truly debilitating.  He completely freezes when he has to write more than a word (and sometimes even that gets him).  

So much of the angst and stress could be avoided, in my opinion.  Assessments can and should be given, but they should be used as barometers of a class and of a child.  If a child is falling behind, he should automatically get direct attention to find out why and how the school can address it, whether it's through small group teaching, individual tutoring, alternatives to traditional instruction, etc.  

Regardless, fourth graders should not feel the pressure of a high-stakes test. No child should have to worry about being left behind.

An addendum:  (And sorry it has taken me nearly a week to add it.)  Dylan passed!  Let the drums roll!  Let the trumpets sound!  What. A. Relief!  He passed all four subjects, three in the basic (at grade level) category and one in mastery.  As happy as I am, I still think this level of high-stakes testing for fourth graders is just wrong.  It's like using a snow shovel to dig a whole in a small flower pot.   

Time for a change

When you get right down to it, I’ve never been much of a long-term planner.  Although I went to an Ivy League caliber college, I didn’t graduate with a 5-year, 10-year, and 20-year plan.  In fact, when I was searching for a job during my last year of college, I didn’t even have any idea what a reasonable year’s salary should be.  

In some respects, I think this lack of planning has served me well.  After all, a mere three years after I graduated college, I traveled across America and “found” New Orleans, the beloved city I now call home.

I certainly couldn’t have planned for having a child with ADHD.  Some surprises are better kept unknown.

But lately, I’ve been thinking about how my lack of planning has impacted me.  And since, RockStar’s planning track record is a fraction of mine, together we’re ill prepared at this point to move forward.

Even though his birthday was months ago, it hit me this week that he is 60 years old.  

When I was graduating college, 60 sounded like an age for walkers and canes. 

He’s already fairly under-employed and that situation isn’t likely to change a whole lot in the future.  In fact, his years of working are potentially numbered.  What would happen if he had a major medical crisis?

I like be open to what comes, not held down to someone else’s idea of what progress should be.  That said, I feel more than a little anxious about the future.  Summer camp this year is financially killing us. The weekly tutor we’ve had really isn’t in the budget.  And they are talking about the water bill doubling.  We simply are not making enough to cover expenses, especially “extra” expenses like these.  The future looks scary with nary a plan in sight.

It makes me wish that I had “planned” to marry well and selected jobs for security rather than interest.

I know, I know.  There is more to life than money.  I truly believe that and I am certainly not someone who needs gold lined cups and $600 suits.  But a new blouse or pants, or even a night out on the town…yeah, those would be welcome. 

This post isn’t a complaint or a cautionary tale, but it is a demand to myself to make some changes and to demand some changes. Addressing ADHD isn’t always cheap.  There are tutors and therapists and assessments, and these all cost money.  And keeping myself sane – whether it’s a manicure or a weekend away - is a worthwhile effort that will actually help Dylan and RockStar. 

Over the summer, I need to make some decisions and I need to get RockStar to face up to some realities.  Yes, maybe we can find some ways to cut back.  But when you already rarely go out to eat and eschew new clothes, there’s not a whole lot of fat to cut back on.  

It’s time to do a little long-range planning.

Spring Break

Can you hear it?

Listen close.

It's the sound of no fighting over homework. That's right, the sound of the absence of tension. A sound that is the absence of a sound.

Okay, so, the moment could be broken at any second over something utterly un-homework related. (Bedtime? Picking up toys? Whether or not I like the kids in Spy Kids.)

But no matter. Right now, at this very moment, I'm happy to not be arguing over homework.

Ah....

It's not that Dylan doesn't have homework - he does - but he has five glorious days to do it in.

Days, not evenings when his meds are out of his system.

It's a sad commentary that homework consumes our family life. Evenings are spent arguing about it. Dinnertimes trying to squeeze in some reading. Breakfasts nudging him to finish assignments. Nights we don't go to the playground, to Kung Fu, to the library. Weekends not spent outside. Music not listened to.

I hate that I have to worry about it while I'm at work. That I have to email teachers describing what our nights are like, trying to get them to see him as a person not a missing homework assignment.

In schools today, creativity is not valued. The focus isn't on making students well-rounded and thoughtful. Instead, the focus is on standardized tests.  Social studies is taught through books, science through videos, when both of these subjects should be experienced through field trips and experiments.

Sometimes, I think we have a life unlived. A life we're supposed to be out doing, instead of inside with homework. Sometimes, I even envy the homeschoolers.


I know one of us would probably kill each other before a week was out, but to have the opportunity to teach subjects through experience, on his timetable not the state school board's...

Well, I'd be saying even more than "ah..."

In all all actuality, I'm saying "ah..." for another reason, too. We had rolling thunderstorms all night long last night.  This was the second time in a week, and our dog as well as the dog we are pet-sitting, went nuts. Especially our dog, Nikki.  Constant panting.  Constant attempts to dig through everything - bags, the laundry, the floor, the tub.  Spilled water.  Pee on the floor.  A "lovely" night without sleep.


But tonight...no storms.  Plus we got a subscription of doggie Xanax for the eventual next round, possibly later this week.


Tonight is for sleeping.  And not homework.