Okay, I admit it, it's been eons since I blogged. It's been a busy few months, back to school (though David is so, freaking happy at MMCL, it's hard to believe), birthdays (his and mine), a nasty virus (his...poor tyke was sick as a pup and sobbed when he was a day away from going back to school because he missed his friends and his teachers), work, and life in general.
Lots has gone on, including reimbursement (partial) from the DOE, not 45 days after we signed the settlement papers but more like 90 days. But we're grateful, both for the funds and for how David is progressing in school. David was reluctant about taking the bus to school but by Day 2, had a bus buddy. The driver and matron, Pat & Pat, are excellent and caring. His commute isn't too long and I can still get to work on time after he's picked up.
We had a bit of back and forth with the DOE about getting David's tri-annual neuropsych exam. I didn't want this kid to be tested and retested unnecessarily like he was in the past (i.e. every time a school psychologist left, the new one wanted to retest because they didn't like the way the previous psychologist did her job!). I pointed out that we paid handsomely for a very comprehensive exam (27 pages of results) in March 2006 which was only about 18 months ago. I almost won but they wanted an updated family history and t0 update other tests that were more than 6 months old. It should be "nothing with nothing" but I am still mildly paralyzed by the thought of any meeting with the DOE. It's set for 9 am on Nov. 3, so David will once again, miss more time at school. But hopefully, he'll be able to show up for part of the day on Monday.
A really pleasant experience was being invited to a dinner reception to welcome the NYSAIS (New York State Association of Independent Schools) Council to MMCL. Every 10 year, independent schools like MMCL are asked to write a mission statement about what they strive to give students (MMCL's was 130 pages long) and representatives from other independent schools, both general ed and special ed, spend 3 days at the school, observing and meeting and evaluating. It was an honor to be selected to be representative of the parent body at MMCL, and also to be able to interact with these caring, committed educators, tell them what a wonderful place MMCL is and in turn, do something good for MMCL who is doing something so extraordinary for us.
Tuesday, October 28, 2008
Monday, September 8, 2008
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!
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!
Monday, June 2, 2008
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.
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.
Wednesday, May 21, 2008
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.
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.
Tuesday, May 6, 2008
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.
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.
Thursday, April 10, 2008
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....
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....
Tuesday, February 19, 2008
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.
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.
Friday, February 1, 2008
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.
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.
Thursday, January 24, 2008
They walk among us
It never ceases to amaze me how many people are dyslexic. There's a new ad campaign, a huge billboard looming over Times Square with that famous picture of Albert Einstein sticking out his tongue. The tagline is something like, "Growing up, he was no Einstein." It's kind of heartening. Not that I want an Einstein, just a kid that can read at a serviceable level. David's smarty-pants enough. I don't need an E=MC2 genius cracking wise to me.
We were at a party upstate recently filled mostly with people we didn't know. I got into a conversation with a fellow who happened to live near us in Brooklyn. The dad of a two-year-old, Michael was curious about the quality of the local school, PS 107. I tried to explain in a "Reader's Digest" version that it was great if your child didn't have special needs, but not so great if your kid was dyslexic like mine. Michael's face softened a bit when he told me, "I'm dyslexic."
I was really interested to learn what growing-up was like for a dyslexic mildly successful freelance photographer. Basically, it sucked. No special schools, was basically socially promoted through his school career because he tried so hard. "But I still can't divide," he admitted.
Things like that warm my heart, how a virtual stranger is willing to open up to another virtual stranger solely by virtue of sharing (sort of) a learning disability. I don't have any outlandish expectations for David. I don't want him to grow up to be a doctor or a lawyer; I just want him to do something that makes him feel whole. And meeting Michael gave me hope.
We were at a party upstate recently filled mostly with people we didn't know. I got into a conversation with a fellow who happened to live near us in Brooklyn. The dad of a two-year-old, Michael was curious about the quality of the local school, PS 107. I tried to explain in a "Reader's Digest" version that it was great if your child didn't have special needs, but not so great if your kid was dyslexic like mine. Michael's face softened a bit when he told me, "I'm dyslexic."
I was really interested to learn what growing-up was like for a dyslexic mildly successful freelance photographer. Basically, it sucked. No special schools, was basically socially promoted through his school career because he tried so hard. "But I still can't divide," he admitted.
Things like that warm my heart, how a virtual stranger is willing to open up to another virtual stranger solely by virtue of sharing (sort of) a learning disability. I don't have any outlandish expectations for David. I don't want him to grow up to be a doctor or a lawyer; I just want him to do something that makes him feel whole. And meeting Michael gave me hope.
Wednesday, January 9, 2008
To be of some use
It's been so long since I blogged that I forgot how to blog. But it all came back to me. Sometimes I think I also have an LD, directionally dyslexic, mildly dyslexic, or whatever polite phrase I can come up with.
A friend just told me that she's used this site about 10 times in the past 2 days. Another e-mailed a few minutes later, asking for a neuropsychologist's name. While I'm very happy this has been helpful to others, my heart aches in a way, just knowing what they will go through, remembering what an awkward, helpless, limbo-like spot I was in last year at this time while I searched for the perfect school for David. Lucky like hell that I found it, much poorer in the pocket but worth every penny because he no longer thinks/says, "I'm the worst kid in the world."
I can't help but wonder if we are being diagnosed to death. Back in the dark ages, when I was a kid and dinosaurs roamed the earth, we didn't have all of these LD's and acronyms. Does it have to do with chemicals in the environment, society pushing our children too hard academically instead of letting them be kids? But we didn't have this stuff when I was a young whippersnapper and I can't help but wonder why. But maybe we did, they just didn't have fancy acronyms.
I come across so many adults, mostly in the arts, who say they are dyslexic when I open up about David. They share with me how hard it was, that they were just promoted socially because they "tried so hard," and how great it would have been to go to a school like Mary McDowell. It's kind of sad, they've done well but they've had such a hard road. And like one fellow said to me this weekend, "I still can't do division."
Another challenge is grandparents (and others) thinking we're making something out of nothing, just hold him back a grade and he'll catch up. But they just don't get is that there is no catching up, not for them. We have to give them the tools to figure out their own coping mechanisms. They might never learn to think like us but at least they'll learn to think like them. Whoever that happens to be.
Our attorney tells us that the Dept of Ed is launching a pilot program to reimburse parents sooner. We just have to provide proof of payment (make copies of those checks!) and a payment affidavit from the school. They will supposedly pay us in a more timely fashion, whatever that means. Three months instead of six? I'm just happy they have agreed to reimburse (though the figure has not been agreed upon as of this date) at all and that we don't have to go to court.
A friend just told me that she's used this site about 10 times in the past 2 days. Another e-mailed a few minutes later, asking for a neuropsychologist's name. While I'm very happy this has been helpful to others, my heart aches in a way, just knowing what they will go through, remembering what an awkward, helpless, limbo-like spot I was in last year at this time while I searched for the perfect school for David. Lucky like hell that I found it, much poorer in the pocket but worth every penny because he no longer thinks/says, "I'm the worst kid in the world."
I can't help but wonder if we are being diagnosed to death. Back in the dark ages, when I was a kid and dinosaurs roamed the earth, we didn't have all of these LD's and acronyms. Does it have to do with chemicals in the environment, society pushing our children too hard academically instead of letting them be kids? But we didn't have this stuff when I was a young whippersnapper and I can't help but wonder why. But maybe we did, they just didn't have fancy acronyms.
I come across so many adults, mostly in the arts, who say they are dyslexic when I open up about David. They share with me how hard it was, that they were just promoted socially because they "tried so hard," and how great it would have been to go to a school like Mary McDowell. It's kind of sad, they've done well but they've had such a hard road. And like one fellow said to me this weekend, "I still can't do division."
Another challenge is grandparents (and others) thinking we're making something out of nothing, just hold him back a grade and he'll catch up. But they just don't get is that there is no catching up, not for them. We have to give them the tools to figure out their own coping mechanisms. They might never learn to think like us but at least they'll learn to think like them. Whoever that happens to be.
Our attorney tells us that the Dept of Ed is launching a pilot program to reimburse parents sooner. We just have to provide proof of payment (make copies of those checks!) and a payment affidavit from the school. They will supposedly pay us in a more timely fashion, whatever that means. Three months instead of six? I'm just happy they have agreed to reimburse (though the figure has not been agreed upon as of this date) at all and that we don't have to go to court.
Subscribe to:
Posts (Atom)
