Summer Fun...Back to Reality

It's been a great summer, telecommuniting for the most part from our cabin (read that, trailer) upstate. David spent 8 weeks in a day camp, which he loved, running around like a colt with other colts his age. The one day we were experimenting with his meds (read that, not giving them to him) and after 3 weeks of being in camp, it was the only day his counselor gave us a complaint about him. "Has problems following instruction...focusing...can't seem to control his body..." the old mantra. Although David is very focussed on the Focalin--maybe too intense for play and perfect for schoolwork--it cuts his appetite to nil until they wear off at about 5 in the afternoon. He started looking very skinny at the beginning of the summer, then I put him on a high fat diet. Haagen Dazs, whole milk, the very opposite of what I eat. He seemed to fill out a bit. By end of August, he polished off a 1 1/4 lb lobster for our anniversary dinner.

More than three months after our IEP meeting in April, we finally received an invite from the Department of Education for David to attend a 12:1:1 class in our district. I can't imagine the trauma of him actually going to another school just a year after settling in so nicely at MMCL but we will give it a look.

Good news is, his IEP was changed to full services which means we also get bus transportation to and from school. Bad news--they were going to send him to the wrong school, The Churchill School, on the wrong day, a full week before classes started at MMCL. After probably dozens of phone calls from me and one of MMCL's many saints, it was straightened out. Now we won't have to brave rude rush hour crowds who push him around like a pinball, jockey for position, or have to begin our days by observing a pitiful homeless woman clad only in filthy mens' underwear in the middle of November.

School starts on the 10th and we are already off to a good start!

Thinking dyslexic

David: "It's warm outside. I should have worn my small pants."
Me: "Small pants?"
David: "Yeah, the small ones."
Me: "You mean pants that don't fit anymore?"
David: "No, the ones you told me to wear first."

Shorts...he meant shorts. In his mind, shorts are "small pants." Not Barbie doll small pants but pants that are small than the usual pants. Shorts.

Sometimes dyslexia seems like kiddie Altzheimers where you have to try and figure out what they mean. Dyslexics forget words for simple things like "shorts" and the names of people they see every other day or have known for years. But they don't forget minute details, like the exact lines of dialogue from Will Ferrell's "Space" parody of Harry Caray. Go figure.

But it's a parent's job to go figure. It's kind of scary when these bizarre connections begin to make sense to you. And somewhat cool when you can figure out the puzzle-like way their mind works, and in a sense, translate the world for them, until they sort out how to do it on their own.

In the matter of David Brown

That's how the front page of the Stipulation of Settlement & Discontinuance reads. It sounds like a polite British parlor play of manners...in the matter of David Brown. What a relief to finally get that letter. What a long, hard trip it's been, wondering if we would ever get there. We are told that we must wait between 45 and 90 days to get reimbursed, but other parents have told us it's been 5 months and counting. But at least we know it's coming. And the best part is, we get to do the same thing next year....and the year after that.

But the real best part is that David is reading. Not at grade level, but with confidence. Not with dread, but with pride. We caught his problem before it did permanent damage to his self-esteem, to his child soul. And to me, that is the real matter of David Brown.

LD Shorthand

When I visit my neglected blog, I feel like I did as a Catholic school kid and had to confess to the priest how long it was since my last confession. Time does fly when you're living life...

Now we've graduated to big, green pills, 15 mg of Focalin. As an eight-year-old grows, so do his drug needs. Seems to be working fine for school but for home, on weekends, 10 mg seems like the trick. After all, he doesn't need to be THAT focussed, just focussed enough so that you don't have to tell him the same thing five times before he listens, and so that he's not invading strangers' personal space on the subway.

Talking to a friend recently, about her pre-k child's issues, I realized that LD parents have a sort of shorthand that other parents probably wouldn't understand. Take LD, for example, for "learning disability." We also, unfortunately know what an IEP is, the CSE and so on. We speak in this clipped sort of shorthand code. Educational ebonics? Another weird observation.

CSE is for me

We had our first CSE (Committee on Special Education) review since David has been out of the public school system that was unable to give him a "free and appropriate education." It was to establish his IEP (Individualized Education Program) for the 2008-2009 school year. (Don't you love all these acronyms?) It seemed to go well and that the Dept was finally able to understand what his needs were and how they weren't being met in the public education system. The team seemed very on the ball, very sympathetic. It's their job to write up a recommendation for the coming school year, and recommend to the Dept the proper educational setting David needs.

One of David's teachers, Elizabeth, was on the phone and gave a very apt description of what David was like in the classroom, how he needs a small setting and often needs to be guided and redirected throughout the day. Basically, the consensus was that he'd be swallowed up in a larger classroom setting, was bright, but would only flourish in a small class with no more than 12 students and 2 teachers. Hmmm, sounds suspiciously like what he has at MMCL. I don't know if the Dept of Ed can duplicate that nurturing, small, specialized type of learning setting but we will soon see what they come up with.

It's a great relief to have that behind us, and we might even, finally, get bus service out of the deal. Maybe it helped seeing me hobble in with a cane and a big Frankenstein surgical shoe after my foot surgery but anything is better than having to drag that poor kid through the rush hour subways and teeming streets at 8 am.

Maybe the Dept of Ed really does want to help kids....

Even better living through big, beige pills

There was a subtle change during the first few days of the new meds but then David quickly reverted to old ways. We then upped the dosage another 5 mg, and the difference was astounding. David received a glowing report from his teachers, was more engaged and involved, even with us. Instead of living "in his head" and having imaginary sword fights with Pokemon characters as we walked to the subway, he actually had conversations with us.

So, we seem to have reached a happy medium for now, but kids grow and change so quickly that it might not last for long. I am still keeping a diary of sorts with things people say, things he says and noting changes in eating habits. Spindly as David is, a major concern we have is the possible loss of appetite side effect. There's a marginal difference in his eating habits--say 2 pancakes in the morning instead of 3--but nothing major.

They also say these meds can affect growth and David's at the lower end of this totem pole as it is. We had experimented with not giving him the meds on weekends or during school vacation but it is a real pleasure to only have to tell him something once instead of three times, and to have him walk instead of running back and forth like a mouse in a wheel. When he skis and has to listen and pay attention to where others are, or when we travel on the train to the museum and he's flopping like a ragdoll all over the seat, I find myself wishing I'd gotten up at 7am to give him his Focalin.

Still no sign of reimbursement from the Dept of Ed and we already had to leave the deposit for next year's school. Still no sign of school bus service and I am due to have foot surgery in April and dread having to travel five days a week with a Frankenstein boot on my foot in rush hour just to escort him back and forth. We got paperwork for his yearly CSE (Committee on Special Education) asking permission to observe David in class...at PS 107. No wonder they couldn't teach him to read; they don't even know what school he's in. Although I corrected the school on the form, I still expect them to show up at the wrong school.

Better living through chemistry?

Although we tried to avoid it for about a year, David went on meds about a week ago to help lasso his impulsivity and distractability. I thought that was what all kids were like, but apparantly not. And not to that degree. To a certain extent, I felt like we'd lost, like we had no choice, like our backs were up against the wall. I had a tough night accepting it, boo-hooing and the whole bit. There's the whole unknown about how a 50 pounder will react to a stimulant like Focalin, even only 5 mg. There are a bunch of nasty side affects like loss of appetite, insomnia, even heart attacks.

So far, so good. No bad side affects, though he does seem more emotional than usual and less able to handle minor disappointments like change of menu (no pizza for dinner) and playdates that didn't materialize. There are minimal behavior changes but nothing drastic. We are getting daily reports from his teacher, who sees subtle changes, but in more challenging subjects, like reading, he seems as distractable as ever. We report to his doctor today and I have a feeling they will up the dosage. I guess he should be somewhere between a Mexican jumping bean and an extra in "One Flew Over the Cuckoo's Nest."

MMCL has been so good about this, keeping us posted, keeping an eye on him. This all happened so quickly, just 2 days after a meeting with the school psychologist, who, unlike a standard Dept of Ed school psychologist, seemed to know details of his personality intimately, even after his being in the school for only a month. David tries hard to concentrate and sit still but seems unable to. We are hoping we will find the right combo/dosage so that he'll be able to blossom, not be a zombie. I would rather have him bouncing off the walls that be comatose.

It might be my imagination, but he seems to have even more energy with these little blue pills. But maybe it's just the weirdness or exhiliration of taking a medicine when he knows he's not "sick." They make all kinds of allowances for his energy level at MMCL, just so long as he's not disturbing anyone else. He can do his work standing up. He can get up and walk around and take breaks. But apparantly, he's been laying around on the desk and doing other distracting things. We'll see.