I have had to fight our school district pretty hard since M. turned three to keep him out of public school. It's been really tough having to stand up, only to be battered at every turn. I do it because I have seen with my own eyes the benefits Montessori has had in M's life, because I have observed the public school classroom recommended for M. and seen the sub-standard education offered, and because I have researched the heck out of it and made the decision I feel is most educationally sound.
Even though this isn't the reason I have M. doing partial homeschool and partial private Montessori school, this kind of thing is one more reassurance I've done the right thing: http://enyal.wordpress.com/2008/10/18/abuse-or-classroom-management/
My local school district has some crazy approaches to behavioral management, and I could totally see this kind of thing going on. In fact, I actually had to request a new school district speech therapist for M. after, among other things, his speech therapist grabbed his arm and yanked him very roughly right in front of me.
Everyday I am down on my knees saying my thanks that I have been able to keep ds out of harm's way, for the most part.
Showing posts with label Disabilities. Show all posts
Showing posts with label Disabilities. Show all posts
Saturday, November 15, 2008
Wednesday, November 12, 2008
When Your Vision Is Too Expansive
I have difficulty compartmentalizing information.
This is often a blessing. I am easily able to take a broad view of systems and also transfer information from one system to another. At classes and workshop, I find myself impatient when other attendees have to stop and ask, "What does this have to do with...[fill in the blank with whatever the topic is]?" (Yes, I found college almost painful.) If the teacher or leader of the class or workshop has made the connection, you can be certain that I too have made the connection. When other people are saying things like, "This is nice, but I was really hoping to get some tangible ideas I can take home," I often am sighing inside. My neurons have usually been firing off ideas the whole time as I've connected all types of information in response to what I am learning.
At times, though, my inability to compartmentalize becomes problematic. Today I found that a global perspective I have been taking for granted for some time is not a common world view. I didn't realize until after I pissed someone off (at work, no less) by taking my broad view as a given. Actually, it took me getting upset that I'd pissed someone off. I got upset and called a colleague who listened to me explain my thinking to her, and then she said "I have never thought of it like that before." The subsequent dialogue in my head went something like:
Oh.
Oh! Huh.
Really? I could have sworn that other colleagues have talked about this before.
Is it just me?
I don't get how this can be compartmentalized.
I am so confused. I am so hurt [that the person I pissed off was so offended].
Sometimes it is hard not to feel crazy.
Postscript: A few days later, I am feeling much better. I called another colleague, one from the west coast whose response to the idea that I think much differently than others was, "you do?!" Ah, it is likely another one of those east-west coast adjustments I am making. So then I talked to a colleague out here who is one of the longest-serving and most respected in our field. And though she has worked for 30 years in the northeast, she also is very involved in the national organization of our association and has a good understanding of regional differences. She is a tremendous mentor for me! I wanted her to help me shift my thinking, if necessary, into a more regionally-appropriate form. But she told me I was spot-on in my thinking, and that more than anything I just have to be patient (and try harder not to scare people so much with my wild west ways LOL).
This is often a blessing. I am easily able to take a broad view of systems and also transfer information from one system to another. At classes and workshop, I find myself impatient when other attendees have to stop and ask, "What does this have to do with...[fill in the blank with whatever the topic is]?" (Yes, I found college almost painful.) If the teacher or leader of the class or workshop has made the connection, you can be certain that I too have made the connection. When other people are saying things like, "This is nice, but I was really hoping to get some tangible ideas I can take home," I often am sighing inside. My neurons have usually been firing off ideas the whole time as I've connected all types of information in response to what I am learning.
At times, though, my inability to compartmentalize becomes problematic. Today I found that a global perspective I have been taking for granted for some time is not a common world view. I didn't realize until after I pissed someone off (at work, no less) by taking my broad view as a given. Actually, it took me getting upset that I'd pissed someone off. I got upset and called a colleague who listened to me explain my thinking to her, and then she said "I have never thought of it like that before." The subsequent dialogue in my head went something like:
Oh.
Oh! Huh.
Really? I could have sworn that other colleagues have talked about this before.
Is it just me?
I don't get how this can be compartmentalized.
I am so confused. I am so hurt [that the person I pissed off was so offended].
Sometimes it is hard not to feel crazy.
Postscript: A few days later, I am feeling much better. I called another colleague, one from the west coast whose response to the idea that I think much differently than others was, "you do?!" Ah, it is likely another one of those east-west coast adjustments I am making. So then I talked to a colleague out here who is one of the longest-serving and most respected in our field. And though she has worked for 30 years in the northeast, she also is very involved in the national organization of our association and has a good understanding of regional differences. She is a tremendous mentor for me! I wanted her to help me shift my thinking, if necessary, into a more regionally-appropriate form. But she told me I was spot-on in my thinking, and that more than anything I just have to be patient (and try harder not to scare people so much with my wild west ways LOL).
Friday, August 15, 2008
Because I am Perseverative About Neurodivergence
What a lovely young man:
And some more food for thought that has been on my mind lately:
And some more food for thought that has been on my mind lately:
Wednesday, August 13, 2008
F* Keppra!
That's how I am feeling right now about my current anti-seizure medication. I am pretty sure I might be having breakthrough seizures, and meanwhile the side effects are still just as bad as they always were...so I am back to square one. F*?! I was this bad before the damn medication. Curse you Keppra! Curse you!!
Meanwhile, I am not doing my 72 hour EEG until the end of September because I don't have time to be hooked to an outlet for what works out to essentially four days once all is said and done. And I don't think the epileptologist wants to play around with my meds until it is done. Though maybe she'd get a better picture if I was off all meds for the EEG. But could I survive? I heard once you go off meds, the seizures get worse than they were before you were on them.
The doc said the goal of meds was to make me feel better not worse. It's time I started feeling better.
Oh F*! It's so dang frustrating. So hop over to the blog of Hopalong. She put music on her blog. The first song is my new theme song: "While You Were Sleeping" by Elvis Perkins. Like I wasn't already sleeping too much before I went on the meds. The singer hadn't intended this to be a theme song for the life of a girl taking Keppra. Clearly there is a deep meaning to the song. But all I can think is that while I was sleeping my babies grew and the money died and there was silence when the kitchen sang. This really, really wasn't the intended meaning of this song. Far from it. Sad.
while you were sleeping
the babies grew
the stars shined and the shadows moved
time flew,
the phone rang
there was a silence when the kitchen sang
its songs competed like kids for space
we stared for hours in our maker's face
they gave us picks
said go mine the sun
and go gold and come back when you're done
while you were sleeping
you tossed, you turned
you rolled your eyes as the world burned
the heavens fell, the earth quaked
i thought you must be, but you weren't awake
no, you were sleeping
you ignored the sun
you grew your power garden
for your little ones
and you found brides for them on christmas eve
they hung young cain from the adam trees
and danced while you were sleeping
i tossed and i turned til i closed my eyes
but the future burned through the planet
turned a hair gray as i relived the day
while you were sleeping
the money died
machines were harmless and the earth sighed
through the wind you slept sound
and gravity caught my love
around the ocean rose, sang about decay
while witches flew
and the mermaids stayed full of dreams,
you overslept and keeping with quiet,
through the walls i crept
i walked on tiptoe,
sent darkness swirling over all the kitchen in the early morning
i'll never catch up to you
who sleeps so sound
my arms are useless
my heart beats too loud to go to sleep
my mind's too proud to bow out
while you were sleeping
the time changed
all your things were rearranged your vampire mirrors face to face
they saw forever out into space
and found you dreaming in black and white
while it rained in all the colors of the night
i watched the tvs memories
championships vanished to sea
could it be, my honey between you and me
so i waited for the riddled sky
to be solved again by sunrise
and i've made a death suit for life
for my father's ill widowed wife
did you have that strangest dream
before you woke
cuz in your gown you had the butterfly stroke
did it escape you like some half told joke?
when you reached for your plume of smoke
it'll haunt you, my honey bee
anyone who is anyone has that same dream
were you falling
were you flyingand
were you calling out
or were you dying
thank god you're up now
let's stay that way
else there'll be no mornings
and no more days
cuz when we're dreaming
our babies grow
the sun shines
and the shadows flow
time flies
the phone rings
there is a silence
and everybody tries to sing
Meanwhile, I am not doing my 72 hour EEG until the end of September because I don't have time to be hooked to an outlet for what works out to essentially four days once all is said and done. And I don't think the epileptologist wants to play around with my meds until it is done. Though maybe she'd get a better picture if I was off all meds for the EEG. But could I survive? I heard once you go off meds, the seizures get worse than they were before you were on them.
The doc said the goal of meds was to make me feel better not worse. It's time I started feeling better.
Oh F*! It's so dang frustrating. So hop over to the blog of Hopalong. She put music on her blog. The first song is my new theme song: "While You Were Sleeping" by Elvis Perkins. Like I wasn't already sleeping too much before I went on the meds. The singer hadn't intended this to be a theme song for the life of a girl taking Keppra. Clearly there is a deep meaning to the song. But all I can think is that while I was sleeping my babies grew and the money died and there was silence when the kitchen sang. This really, really wasn't the intended meaning of this song. Far from it. Sad.
while you were sleeping
the babies grew
the stars shined and the shadows moved
time flew,
the phone rang
there was a silence when the kitchen sang
its songs competed like kids for space
we stared for hours in our maker's face
they gave us picks
said go mine the sun
and go gold and come back when you're done
while you were sleeping
you tossed, you turned
you rolled your eyes as the world burned
the heavens fell, the earth quaked
i thought you must be, but you weren't awake
no, you were sleeping
you ignored the sun
you grew your power garden
for your little ones
and you found brides for them on christmas eve
they hung young cain from the adam trees
and danced while you were sleeping
i tossed and i turned til i closed my eyes
but the future burned through the planet
turned a hair gray as i relived the day
while you were sleeping
the money died
machines were harmless and the earth sighed
through the wind you slept sound
and gravity caught my love
around the ocean rose, sang about decay
while witches flew
and the mermaids stayed full of dreams,
you overslept and keeping with quiet,
through the walls i crept
i walked on tiptoe,
sent darkness swirling over all the kitchen in the early morning
i'll never catch up to you
who sleeps so sound
my arms are useless
my heart beats too loud to go to sleep
my mind's too proud to bow out
while you were sleeping
the time changed
all your things were rearranged your vampire mirrors face to face
they saw forever out into space
and found you dreaming in black and white
while it rained in all the colors of the night
i watched the tvs memories
championships vanished to sea
could it be, my honey between you and me
so i waited for the riddled sky
to be solved again by sunrise
and i've made a death suit for life
for my father's ill widowed wife
did you have that strangest dream
before you woke
cuz in your gown you had the butterfly stroke
did it escape you like some half told joke?
when you reached for your plume of smoke
it'll haunt you, my honey bee
anyone who is anyone has that same dream
were you falling
were you flyingand
were you calling out
or were you dying
thank god you're up now
let's stay that way
else there'll be no mornings
and no more days
cuz when we're dreaming
our babies grow
the sun shines
and the shadows flow
time flies
the phone rings
there is a silence
and everybody tries to sing
Tuesday, July 8, 2008
Tears of Recognition
I saw a seizure specialist for the first time today. It was a fiasco getting there. The hospital was completely disorganized, and the right hand did not know what the left was doing. I was sent to three different locations (in two different buildings)-- and had an inquiry by my name placed in two different computers by two different hospital staff people-- before finally being sent to the correct location for the seizure clinic.
The clinic is part of Harvard Medical School. For a good portion of my young adulthood, I wanted to attend Harvard Medical School. Life meanwhile took another direction. It was odd now to be driving past the school as a patient, and to have (presumably) one of its students (a resident perhaps?) conduct my patient interview and physical exam.
After finishing the interview and the exam, this doctor-- who I will call the "interview doctor"-- left the room, and he came back about ten or fifteen minutes later with the doctor to whom I'd originally been referred, who I will call the "recommendations doctor." She made the recommendations for next steps.
Basically, there are two things the "recommendations doctor" would like to do, to get a better understanding of what is happening in my brain. First, she would like to send me home with a portable EEG unit that I will keep on for 48 hours. During this time, it will take intermittent recordings. G. can also turn it on to do a recording if she feels I am spacing out. This provides a panaromic view of the electrical activity in my brain. The EEG I had done a while back was only a snapshot, and although it came back abnormal, provides little information.
The other thing the "recommendations doctor" would like to do is a high resolution MRI. Though the MRI I recently had been done was with contrast dye, giving us a good amount of information, the high resolution MRI will give us even more information.
The "recommendations doctor" explained to me that she is guessing I am having seizures that are impacting a large part of my brain, or indeed the whole thing. My symptoms would be more localized if the seizures were more localized.
When she first came into the room, the "recommendations doctor" asked me some clarifying timeline questions. Since my memory has been impacted in the course of my symptoms, the timeline had been difficult for me in the first place. But basically what I explained to the "interview doctor" was that I don't remember being especially symptomatic until maybe about five years ago. It has gotten slowly but progressively worse since then, and only within the last year or year and and a half was it bad enough that G. was alarmed to the point of forcing my hand so that I would see a doctor.
The clarifying questions were interesting. The "recommendations doctor" was able to use certain periods of time (for example, classes I took in high school) to help me create a better timeline. It was during that conversation when I remembered some experiences in school from early childhood. They may have been early symptoms. Tears began streaming down my face as the memories poured in. For years, those memories were markers of low academic self-esteem. Suddenly, those memories were also transformed into potential markers of a seizure disorder.
I was overcome by the need to apologize to the doctors for my tears. I felt so silly, sitting there in the clinic crying as I remembered little hardships about being a young student. The "recommendations doctor" let me know it was okay to cry. She said, "It seems to me we get a lot of tears around here. I think they are tears of recognition." Indeed.
She said that the seizures can go unnoticed for years and years even if they occur for say, as long as 30 or 45 seconds. She said she felt like intelligence could make up for large chunks of missing time. The brain just does double-time. I guess she was saying I am smart ;-). But this gets challenging as we get older, she explained, because our brains end up doing more multi-tasking as we balance our jobs and our families, and so forth. When we are younger and more focused on something like school, we have more reserves for a brain doing double duty. I don't have that luxury now, which may be why things are progressing and I was finally pushed to see a neurologist. Apparently, this isn't rare.
I had been thinking about my case as a "new(ish) onset" of seizures. Hmmm.
What an interesting day it has been.
The clinic is part of Harvard Medical School. For a good portion of my young adulthood, I wanted to attend Harvard Medical School. Life meanwhile took another direction. It was odd now to be driving past the school as a patient, and to have (presumably) one of its students (a resident perhaps?) conduct my patient interview and physical exam.
After finishing the interview and the exam, this doctor-- who I will call the "interview doctor"-- left the room, and he came back about ten or fifteen minutes later with the doctor to whom I'd originally been referred, who I will call the "recommendations doctor." She made the recommendations for next steps.
Basically, there are two things the "recommendations doctor" would like to do, to get a better understanding of what is happening in my brain. First, she would like to send me home with a portable EEG unit that I will keep on for 48 hours. During this time, it will take intermittent recordings. G. can also turn it on to do a recording if she feels I am spacing out. This provides a panaromic view of the electrical activity in my brain. The EEG I had done a while back was only a snapshot, and although it came back abnormal, provides little information.
The other thing the "recommendations doctor" would like to do is a high resolution MRI. Though the MRI I recently had been done was with contrast dye, giving us a good amount of information, the high resolution MRI will give us even more information.
The "recommendations doctor" explained to me that she is guessing I am having seizures that are impacting a large part of my brain, or indeed the whole thing. My symptoms would be more localized if the seizures were more localized.
When she first came into the room, the "recommendations doctor" asked me some clarifying timeline questions. Since my memory has been impacted in the course of my symptoms, the timeline had been difficult for me in the first place. But basically what I explained to the "interview doctor" was that I don't remember being especially symptomatic until maybe about five years ago. It has gotten slowly but progressively worse since then, and only within the last year or year and and a half was it bad enough that G. was alarmed to the point of forcing my hand so that I would see a doctor.
The clarifying questions were interesting. The "recommendations doctor" was able to use certain periods of time (for example, classes I took in high school) to help me create a better timeline. It was during that conversation when I remembered some experiences in school from early childhood. They may have been early symptoms. Tears began streaming down my face as the memories poured in. For years, those memories were markers of low academic self-esteem. Suddenly, those memories were also transformed into potential markers of a seizure disorder.
I was overcome by the need to apologize to the doctors for my tears. I felt so silly, sitting there in the clinic crying as I remembered little hardships about being a young student. The "recommendations doctor" let me know it was okay to cry. She said, "It seems to me we get a lot of tears around here. I think they are tears of recognition." Indeed.
She said that the seizures can go unnoticed for years and years even if they occur for say, as long as 30 or 45 seconds. She said she felt like intelligence could make up for large chunks of missing time. The brain just does double-time. I guess she was saying I am smart ;-). But this gets challenging as we get older, she explained, because our brains end up doing more multi-tasking as we balance our jobs and our families, and so forth. When we are younger and more focused on something like school, we have more reserves for a brain doing double duty. I don't have that luxury now, which may be why things are progressing and I was finally pushed to see a neurologist. Apparently, this isn't rare.
I had been thinking about my case as a "new(ish) onset" of seizures. Hmmm.
What an interesting day it has been.
Sunday, June 8, 2008
Determining The Title of My Memoir
First of all, happy birthday to me! Well it is the day after my birthday, but I stayed up late to start this post, and now I am going to finish it.
Given that it is my birthday, sort of, it's a good day for the following.
Given that it is my birthday, sort of, it's a good day for the following.
STRANGE CHILD (ME)September tagged me, and as my mom said, "it's a cool one - not too time-consuming," and I will add that it is as silly or as serious as you want it to be.
1. Write the title to your own memoir using 6 words.
2. Post it on your blog.
3. Link to the person that tagged you.
4. Tag five more blogs.
Okay, so in my high school journalism class, I was demoted from writing titles because I've never been good at them. This was harder for me than it ought to have been.
But I still had some fun with it.
Here are some titles I thought of...
- First, I had trouble with the six word thing. My early attempts included some word fudging. One of my favorites from that stage was Make a List, Graph It, Forgetaboutit! If you don't count "a" as a word, that helps. Anyway, anyone who knows me well knows I am a serious list maker, and that I graph and plan and scheme in a most serious manner, but 80% of the time I forget the project I've taken ever so seriously soon enough because I've moved on to the next one.
- Then I took this task more seriously for a bit, and thought of titles that represent the "core me." "They" say every preacher has one good sermon in them. It's possible I may have written mine, and that now everything is a variation. If I make it into a six word title, it is something like: Love Lived Freely, Fear Through Thee. Okay, actually, the sermon part may apply best to the first three words. And I am not sure if the title even makes sense now, the way I broke it down into six words. But basically, the idea is that the fundamental core of my life has been my attempt to live a life centered in LOVE, even when that has meant living (charging) through huge fears. I decided that if G. had her way, she would probably vote to transform the above title into something more like: Chaos...Love...Chaos: Fear Love Not, which probably reads even less smoothly than the one above, but is likely a more accurate description of the way I live my life. That is...dive in because love is the strongest value, live in the chaos that happens when love determines your course (think: our experiences as foster moms), then repeat! But fear not, for love is worthy. Along those same lines, I thought of Chaos, Love, Fear...Chaos, Love, Fear. I liked that one because I could imagine a series of chapters with each of those words as titles, repeating themselves over again as needed ("Chaos Part I," "Love Part I," "Fear Part I," "Chaos Part II"...you get the point). I think I could easily write about my life in this manner, but it really under-emphasizes love, which I believe to be the stronger and most important theme.
- That made me think of one I liked even better, but that may have involved more than six words depending on how you count them, and that sounded a bit unoriginal: She Was Called & So It Was. Still, that's a pretty good synopsis of my life, and the development of my family and vocation. The last or first words of the book would have to be "and it was good," from scripture.
- Similarly, I tried to summarize my life is six words, and PHEW! That's pretty much impossible. The best I could come up with was It’s Good, Just Not That Simple, but I didn't like that title. It sounded negative.
- Never Fully Understanding, Never Fully Understood were words I used when posting a comment on another blog. And I guess I do feel like my life does have that thread in it (especially the "never fully understanding..." must nod here to my own constant state of confusion LOL). But that probably is overly simplistic and would come off as negative even when I don't mean it to be so (oh, yes, because I will never be fully understood ha ha ha), and truly, my life IS good.
- So then I started thinking more about my personal characteristics. It reminded me of Snow White and the Seven Dwarfs. I couldn't remember all their names, but I could think of lots of good title words that could pass as their names even if they weren't really. Ones I came up with included: Sleepy, Grumpy, Happy, Dopey, Mopey, Sneezy. I also liked this one because it lended itself well to chapter titles, and I could easily shape my life to fit within these chapters. Sneezy would have to be a medical chapter, by the way, which could be very interesting. That said, only one chapter for "happy?" Hmmm. Had to move on.
- Thinking of my personal characteristics also immediately brought this one out: Her Obituary Was Written and Updated. Or I guess since it isn't a biography but rather a memoir, perhaps it should be My Obituary Was Written and Updated. G. will laugh at this one. She knows it's true. I've written my obituary. I have fill in the blank spots she can use for updates (add children or whatever), but it is otherwise done. And I go back every now and then to update it. What I still have to do, and plan on doing, is put together most of my memorial service. G. calls this morbid. For me, it has nothing to do with death really. It is absolutely 100% an expression of my love for her, a deep desire to take care of her, and my way of honoring what I know will be among the harder things for her if I die before her (G. does not enjoy writing, and she especially abhors articulating emotion in public). I think this title says something about the core of who I am and how I think. It also gets straight to the heart of my life because my family is the absolute most important thing in the world to me and the center of my universe in almost every way, shape, and form. After thinking up that title, I got it in my head that I could expand that concept for more flexibility in chapters. And here, I ended up fudging with the word limit again: She Wrote It Because She Lovesya. Alright, alright. It wasn't that good, so I'll go back to the word limit.
- In a moment of self-doubt I wrote a title I would never use, mainly because it is inaccurate, but I liked it anyway because it is reflective of some aspect of my inner life: Sturdy Girl Outside, Fragile Girl Inside.
- Poking fun of myself further, but also capturing some of my nature, I thought of: I Hate Change; Let’s Change It. It really needs seven words though. It would read much better as I Hate Change, but Let's Change It. The idea is that I have an ongoing love-hate relationship with change. G. will be the first to tell you that as soon as the dust settles, and I start to get comfortable, I feel the need to stir things up again...to change something. G. is always talking about when things in our lives settle down. The whole notion of "settling down" has become some mystical creature always around the corner. She has been talking about it for the ten years we've been together, and truly, especially since our move to the west coast, our lives are characterized by living in stirred dust. I have to take responsibility for that. I am always taking on projects (starting a charter school among my most recent desires for a potential project, for example), and changing big things (having babies, and so forth). I don't like being idle. At work, too. I often come off as unafraid, daring, willing to take risks, interested in big vision and the future. And yeah, that is largely how I am. However, on a huge level, I also hate change. I am the last to agree to a change in the rearrangement of furniture in my home. I often cry when traditions are altered in the slightest. I prefer to eat the same things for months on end (hmmm...more neurodivergence I suspect). I am cranky, irritable, and generally uncomfortable when things in my environment or the dynamics of my relationships change. Yep, it is love-hate for sure. What a nut!
- One of the more obscure titles I thought of was: It’s Late Or Never: I Choose… does that even read? The concept was alright, but it didn't translate well to six words. The idea was something along the lines of my slow movement through life, and the choices I have made often involving either "never" or "late." Clearly, however, if one can't describe the concept in a clear fashion, one isn't going to write a book on it, so I guess that one is out. Oh well, it was a very limited depiction of my life anyway.
- That said, the last one mentioned got me on a roll with the often eccentric, neurodivergent, unusual, funky, and slightly off-center relationship between my internal and the external world. One of the first titles I thought of along those lines was this: Isn’t That the Name, Villa Waffers? My parents and siblings will know immediately what I am talking about. I might have been eight years old, if memory serves, and my family was on a picnic. On our picnic table was a box of Vanilla Wafers. I'd eaten them before and was perfectly familiar with their name, but when I asked for them to be passed to me, I read the name off the box rather than recalling the name. Despite good reading skills, I misread the box. "Pass the Villa Waffers, please" I said. Now that I am on anti-seizure meds, I am starting to realize how this seemingly benign childhood event is a piece of a puzzle in a lifelong pattern. I am now coming to understand that this is a big part of "my story." Why was I unable to rely on memory recall to ask for the Vanilla Wafers? Even if I read the box, why hadn't I caught the difference between my memory of the name and what I was (mis)reading? The answer may in fact be a part of funky neurological wiring rather than just a silly childhood "moment" (sort of like the cliche, "senior moment"). But thankfully, the incident was met with good cheer and generally friendly, compassionate humor rather than mocking. My parents' home has long been nicknamed "Villa Waffers," and we still sometimes use this nickname in addressing correspondence.
- Thinking in those terms, I was able to come up with several rather highly apropos titles including: No, That Never Occurred To Me; Brilliance Wrapped Up in a Box; I’m Sure I Never Said That; and Glimpses of Brilliance Muted and Lost.
This led to my all time favorite so far. Here we go.......................
Perseveration, Stimming, Deep Pressure, Heavy Work
That would be it in a nutshell. I'd have a chapter with each word as its title, and I would divide up my life's story accordingly. This would be EASY. Each is a therapeutic term describing either neurodivergent behaviors or therapeutic techniques to address neurodivergent needs. People often do the therapeutic techniques naturally if their neurological systems need them, but if you ever go to Occupational Therapy or Speech Therapy, you might just be taught how to use the techniques in a more intentional way.
Anyway, I like the way it captures my life so well, and also captures my distinct interest (obssession...perseveration??) regarding all things medical/neurological in nature.
Wednesday, May 28, 2008
Not done (aka: dangerously blogging while angry)
An addition to my writing of a few minutes ago. I just read the comments on the news cast website, and I am all the more horrified. Here is my most recent post on my message board.
Post Four: You know, the comments on the news video...VOMIT! More parent blaming for the child with the disability...more wah, wah, we adults lose it because we aren't allowed to discipline and we have no idea how else to relate to children with disabilities other than to discipline (punish) them into submission. More, no one understands how bad it is for teachers and how this child is surely the devil himself.
Not to mention more excusing the teacher's behavior with the notion that teachers are overworked and underpaid. BELIEVE ME. My wife was a preschool teacher, the most overworked and underpaid of them all. And at one point in a preschool with HUGE discipline issues. But being overworked and underpaid still is not a justification for abuse of a child. It is just not.
I appreciated the person who commented, "Did she really think she could bully him into better behaviour?" Well, given the way we have historically misunderstood and mistreated people with disabilities, it is possible she thought she could. But she was WRONG (and unprofessional and abusive).
Someone commented on the news cast website:
"The teacher explained that this student had been a major disruption in her classroom all year: yelling, touching and bothering others, rolling around on the floor, etc."
All of these are actually types of behavioral communication that make sense for a child with aspergers. It is a discipline issue until the teacher figures out what the child is trying to communicate and responds appropriately. The behavior will stop when the need is met. The child is trying to regulate his neurological system. The child is trying to communicate with other children when words fail him. The child is trying to respond to his environment when it overwhelms him. That's hard work, but all this he has had to do all year under the duress of this emotionally unsafe classroom environment.
I just can't get over it.
Saying (as one person did in their comments) "the teacher explained that this student had been a major disruption in her classroom all year: yelling, touching and bothering others, rolling around on the floor, etc." about a child getting evaluated for aspergers is like saying about a child being evaluated for visual impairment: "the teacher explained that this student had been a major disruption in her classroom all year: running right up to the chalk board while the teacher was writing, running and bumping into other students, putting her hands on the walls when walking down the hall, sometimes even causing other students' artwork to fall."
Post Four: You know, the comments on the news video...VOMIT! More parent blaming for the child with the disability...more wah, wah, we adults lose it because we aren't allowed to discipline and we have no idea how else to relate to children with disabilities other than to discipline (punish) them into submission. More, no one understands how bad it is for teachers and how this child is surely the devil himself.
Not to mention more excusing the teacher's behavior with the notion that teachers are overworked and underpaid. BELIEVE ME. My wife was a preschool teacher, the most overworked and underpaid of them all. And at one point in a preschool with HUGE discipline issues. But being overworked and underpaid still is not a justification for abuse of a child. It is just not.
I appreciated the person who commented, "Did she really think she could bully him into better behaviour?" Well, given the way we have historically misunderstood and mistreated people with disabilities, it is possible she thought she could. But she was WRONG (and unprofessional and abusive).
Someone commented on the news cast website:
"The teacher explained that this student had been a major disruption in her classroom all year: yelling, touching and bothering others, rolling around on the floor, etc."
All of these are actually types of behavioral communication that make sense for a child with aspergers. It is a discipline issue until the teacher figures out what the child is trying to communicate and responds appropriately. The behavior will stop when the need is met. The child is trying to regulate his neurological system. The child is trying to communicate with other children when words fail him. The child is trying to respond to his environment when it overwhelms him. That's hard work, but all this he has had to do all year under the duress of this emotionally unsafe classroom environment.
I just can't get over it.
Saying (as one person did in their comments) "the teacher explained that this student had been a major disruption in her classroom all year: yelling, touching and bothering others, rolling around on the floor, etc." about a child getting evaluated for aspergers is like saying about a child being evaluated for visual impairment: "the teacher explained that this student had been a major disruption in her classroom all year: running right up to the chalk board while the teacher was writing, running and bumping into other students, putting her hands on the walls when walking down the hall, sometimes even causing other students' artwork to fall."
This Is NOT Okay
So a couple days ago, one of the parents on a message board I frequent posted a link to this article:
Post One: I am sitting here sobbing at the thought.
Literally, I could see this happening to my son. I am TERRIFIED of putting him in school.
What does the teacher think this is, an f'ing Survivor episode?!!
Seriously, that was so emotionally damaging for this boy AND all the students in this class. And really, those two little ones who voted against the crowd...you have got to be impressed because at that age, how hard would that be?! Incredible.
Post Two (After someone wondered whether the teacher was engaging in a misguided attempt to teach him natural consequences-- as in, if you behave in a particular manner, you will upset other people and they won't want to be around you):
If it was a natural consequence of his behavior, then I am sure he was already experiencing it.
Where did the IEP come into all of this? That's what I want to know. Because if the kid had an IEP as a result of aspergers, then there likely had to have been some kind of plan to address these types of issues with this kid.
Post Three (When someone reminded me that there wasn't yet an IEP in place): Right. I got so wound up about this that I started forgetting some of the details. Still...
Then someone reminded us of this, from the original article:
Of course what this teacher did would have been awful no matter what student was the victim: a student of any age, with any disability or none at all. But this teacher attended the IEP meetings. She knew what was up. This is disabilism. This is horrific!!
And now, listen to the tape (go to the following link, scroll down to the video box, and click on "watch this story"):
How on earth can the school district say this doesn't meet the standards for emotional abuse? This is absolutely NOT okay, and as for me, I am taking this very personally. Because this is a blow to all human beings who have any sense of decency at all, not to mention all of us who have children and especially those of us with "disabled" children.
But the worst of it is the fact that the damage has been done, to this child and to all the other children in that classroom. Serious damage. It will take a lot of hard work to help these children heal these wounds. The only silver lining I see is that this child is learning in a major way (albeit under unfortunate circumstances) that his parents will protect and stand up for him. May all children come to be so blessed.
Here's a photo of this little guy, lest we run the risk of thinking of him as a hypothetical.
Of course we all-- meaning all the moms on the message board who read the story-- went straight up in arms about it.
Here is some of what I said:
Post One: I am sitting here sobbing at the thought.
Literally, I could see this happening to my son. I am TERRIFIED of putting him in school.
What does the teacher think this is, an f'ing Survivor episode?!!
Seriously, that was so emotionally damaging for this boy AND all the students in this class. And really, those two little ones who voted against the crowd...you have got to be impressed because at that age, how hard would that be?! Incredible.
Post Two (After someone wondered whether the teacher was engaging in a misguided attempt to teach him natural consequences-- as in, if you behave in a particular manner, you will upset other people and they won't want to be around you):
If it was a natural consequence of his behavior, then I am sure he was already experiencing it.
Where did the IEP come into all of this? That's what I want to know. Because if the kid had an IEP as a result of aspergers, then there likely had to have been some kind of plan to address these types of issues with this kid.
Post Three (When someone reminded me that there wasn't yet an IEP in place): Right. I got so wound up about this that I started forgetting some of the details. Still...
Then someone reminded us of this, from the original article:
"Barton said her son is in the process of being diagnosed with Aspberger's, a type of high-functioning autism. Alex began the testing process in February for an official diagnosis under the suggestion of Morningside Principal Marsha Cully. Alex has had disciplinary issues because of his disabilities, Barton said. The school and district has met with Barton and her son to create an individual education plan, she said. His teacher, Wendy Portillo, has attended these meetings, she said."
Of course what this teacher did would have been awful no matter what student was the victim: a student of any age, with any disability or none at all. But this teacher attended the IEP meetings. She knew what was up. This is disabilism. This is horrific!!
And now, listen to the tape (go to the following link, scroll down to the video box, and click on "watch this story"):
How on earth can the school district say this doesn't meet the standards for emotional abuse? This is absolutely NOT okay, and as for me, I am taking this very personally. Because this is a blow to all human beings who have any sense of decency at all, not to mention all of us who have children and especially those of us with "disabled" children.
But the worst of it is the fact that the damage has been done, to this child and to all the other children in that classroom. Serious damage. It will take a lot of hard work to help these children heal these wounds. The only silver lining I see is that this child is learning in a major way (albeit under unfortunate circumstances) that his parents will protect and stand up for him. May all children come to be so blessed.
Tuesday, April 15, 2008
My letter to that Montessori School
The following is the letter that I sent to Summit Montessori School in Framingham after my visit to their open house and the conversation I described in my notes posted earlier (notes and letter have been edited to conform with my standards for using initials of names only on my blog).
This was not the kind of situation that was "complaint worthy" in terms of making a formal complaint and actually requesting that something specific is done about it and expecting results. I feel pretty certain that I am uninterested in submitting an admissions application for M. in this school, largely because of that particular experience. However, I did feel like it might be useful for the school to be aware of the situation, whether or not they chose to do anything about it. I felt that at the very least, they ought to have the privilege of hearing my experience so they could do with it what they like.
Dear Summit Montessori School,
As the parent of a prospective student who will turn three this week, I came to your open house today. Your Director of Admissions, J.M., noticed and kindly complimented me on a form I made to use in my visits to Montessori schools. She asked me what my source was for this form. It was a form I had created for my own use. I’ve enclosed a copy in case you would find it useful in any manner.
I want to thank you for the time your staff took with me during my visit to the school. I had many questions, and I really appreciated that you were all so patient with me, giving me plenty of time to ask my questions.
The visit to the school was enlightening. I am a parent in [name of city], and we are considering a move to [name of city] if we find the right school in the area. As I am sure is the case with all parents, decisions I am making about my son’s education are deeply important to me and have already involved many hours of research, touring schools (all Montessori, as I have chosen this method because of my background and commitment to the model and my son’s responsiveness to it), and reflection. The decision about the school my child will attend is one I will not enter into lightly.
This was also one of the saddest days in my life as a parent.
I have been a parent for a number of years now. Before adopting my son, and having my younger foster daughter placed with us as a foster-adopt placement, my partner and I had foster parented children up through the age of fifteen. As you can imagine, I have had many profoundly sad and profoundly joyful times. This day will be among the saddest days of parenthood for me because it is representative of the “no admission” sign on so many doors that my son will encounter through his life.
I’ve enclosed some notes from a conversation I had with J.M. toward the end of my visit. I hope they are helpful for you.
Before you read these notes, however, I would like you to know the following things. I have experience with Montessori. My mother formerly taught in a Montessori school. Though I did not attend a Montessori school as a child, my mother brought some of Montessori’s approach into our home life (and also modeled parts of the method for me in the year she homeschooled my younger brother). As an adult whose vocation is Religious Education/Family Ministry, I have studied educational models in great depth, and developed an ever-growing and cherished commitment to Montessori’s method.
I have been trained in a Montessori model of Religious Education (Spirit Play, a version of Godly Play), and prior to moving to Massachusetts, as head of [a Religious Education/Family Ministry in name of city and state], I worked to start a Spirit Play program that tripled in size by its third year. I watched a certified Montessori teacher who had additionally been trained in Spirit Play, as well as teachers trained only in Spirit Play, transform the culture of that ministry. I spent a minimum of one-and-a-half hours per week in a children’s Spirit Play classroom, which included children with special needs.
The “Montessori way” is integrated into my own children’s home life. In fact, I took my son to visit one Montessori school where a teacher commented, “Wow! He takes right to this model. Look at his response, with virtually no orientation from me. He could start tomorrow! What a sweetie!”
My son is a loving, sensitive, gentle, affectionate, curious child with an incredible memory and a strong ability to creatively solve problems. He has experienced a lot in his short life, but demonstrates tenacity, courage, persistence, resilience, and a will to not only survive but to thrive. He has a great sense of humor, and is a delightful human being. He is very loved by a diverse group of kids and adults alike. He wants to learn, and like all people, he wants to participate in the world in meaningful ways.
My son also has developmental delays. He is slightly “behind” other children his age in all areas of development, and significantly delayed in language development. He isn’t able to communicate everything that he understands, and the signs that he is paying attention are not always obvious (for example, he may not make eye contact because the convergence and divergence of muscles in the eyes is tiring), but he is observant and interested in the world. Because his birthparents both require assisted living, it is possible that he will experience some lifelong challenges. Despite this, some days it is possible to forget he has special needs altogether. Like all three year olds, my son is a wonder-filled, observant individual striving to create meaning in his little world.
Though I am not convinced all these things should matter, my son, by the way, can fairly-independently dress and undress himself, can drink out of an open cup, can feed himself (though he struggles some with the use of flatware, which can be tough for him to manipulate, and does tend to resort to finger foods), can walk and run and climb (though he can’t jump), can manage stairs with railing independently, can open and shut doors with care, and is learning to use the toilet. [All of the above are important skills children are taught in a Montessori setting.]
Thank you again for your time, and I do very much hope the enclosed items [primarily the notes from my conversation with Director of Admissions] are useful to you as you continue to grow your lovely school.
Warmly,
S.
This was not the kind of situation that was "complaint worthy" in terms of making a formal complaint and actually requesting that something specific is done about it and expecting results. I feel pretty certain that I am uninterested in submitting an admissions application for M. in this school, largely because of that particular experience. However, I did feel like it might be useful for the school to be aware of the situation, whether or not they chose to do anything about it. I felt that at the very least, they ought to have the privilege of hearing my experience so they could do with it what they like.
Dear Summit Montessori School,
As the parent of a prospective student who will turn three this week, I came to your open house today. Your Director of Admissions, J.M., noticed and kindly complimented me on a form I made to use in my visits to Montessori schools. She asked me what my source was for this form. It was a form I had created for my own use. I’ve enclosed a copy in case you would find it useful in any manner.
I want to thank you for the time your staff took with me during my visit to the school. I had many questions, and I really appreciated that you were all so patient with me, giving me plenty of time to ask my questions.
The visit to the school was enlightening. I am a parent in [name of city], and we are considering a move to [name of city] if we find the right school in the area. As I am sure is the case with all parents, decisions I am making about my son’s education are deeply important to me and have already involved many hours of research, touring schools (all Montessori, as I have chosen this method because of my background and commitment to the model and my son’s responsiveness to it), and reflection. The decision about the school my child will attend is one I will not enter into lightly.
This was also one of the saddest days in my life as a parent.
I have been a parent for a number of years now. Before adopting my son, and having my younger foster daughter placed with us as a foster-adopt placement, my partner and I had foster parented children up through the age of fifteen. As you can imagine, I have had many profoundly sad and profoundly joyful times. This day will be among the saddest days of parenthood for me because it is representative of the “no admission” sign on so many doors that my son will encounter through his life.
I’ve enclosed some notes from a conversation I had with J.M. toward the end of my visit. I hope they are helpful for you.
Before you read these notes, however, I would like you to know the following things. I have experience with Montessori. My mother formerly taught in a Montessori school. Though I did not attend a Montessori school as a child, my mother brought some of Montessori’s approach into our home life (and also modeled parts of the method for me in the year she homeschooled my younger brother). As an adult whose vocation is Religious Education/Family Ministry, I have studied educational models in great depth, and developed an ever-growing and cherished commitment to Montessori’s method.
I have been trained in a Montessori model of Religious Education (Spirit Play, a version of Godly Play), and prior to moving to Massachusetts, as head of [a Religious Education/Family Ministry in name of city and state], I worked to start a Spirit Play program that tripled in size by its third year. I watched a certified Montessori teacher who had additionally been trained in Spirit Play, as well as teachers trained only in Spirit Play, transform the culture of that ministry. I spent a minimum of one-and-a-half hours per week in a children’s Spirit Play classroom, which included children with special needs.
The “Montessori way” is integrated into my own children’s home life. In fact, I took my son to visit one Montessori school where a teacher commented, “Wow! He takes right to this model. Look at his response, with virtually no orientation from me. He could start tomorrow! What a sweetie!”
My son is a loving, sensitive, gentle, affectionate, curious child with an incredible memory and a strong ability to creatively solve problems. He has experienced a lot in his short life, but demonstrates tenacity, courage, persistence, resilience, and a will to not only survive but to thrive. He has a great sense of humor, and is a delightful human being. He is very loved by a diverse group of kids and adults alike. He wants to learn, and like all people, he wants to participate in the world in meaningful ways.
My son also has developmental delays. He is slightly “behind” other children his age in all areas of development, and significantly delayed in language development. He isn’t able to communicate everything that he understands, and the signs that he is paying attention are not always obvious (for example, he may not make eye contact because the convergence and divergence of muscles in the eyes is tiring), but he is observant and interested in the world. Because his birthparents both require assisted living, it is possible that he will experience some lifelong challenges. Despite this, some days it is possible to forget he has special needs altogether. Like all three year olds, my son is a wonder-filled, observant individual striving to create meaning in his little world.
Though I am not convinced all these things should matter, my son, by the way, can fairly-independently dress and undress himself, can drink out of an open cup, can feed himself (though he struggles some with the use of flatware, which can be tough for him to manipulate, and does tend to resort to finger foods), can walk and run and climb (though he can’t jump), can manage stairs with railing independently, can open and shut doors with care, and is learning to use the toilet. [All of the above are important skills children are taught in a Montessori setting.]
Thank you again for your time, and I do very much hope the enclosed items [primarily the notes from my conversation with Director of Admissions] are useful to you as you continue to grow your lovely school.
Warmly,
S.
A Montessori School Open House Experience
The following are notes from a conversation I had with the Director of Admissions at a Montessori school near us. The post directly above this one will be the letter I sent to the school regarding these notes (I've edited both the notes and the letter to conform with the use of intials as names on this blog). I thought this was interesting enough conversational material for us here. What does this say about where we are as a society when it comes to special needs? What does this say about what is happening in the world of Montessori right now?
· Children with special needs are not welcome. J. does not want me to apply for my son’s admittance. If I want to push it, I might be able to get admittance for my son, but first I need to prove that he wouldn’t “be a problem.”
· As a child with special needs, my child would be under a level of scrutiny in the admissions process and in the classroom that other children in the school do not experience. (By the way, can you imagine a job interview in which you had to sit there and talk about your own special needs/challenges/etc. for twenty minutes...wouldn't you end up sounding like an impossible person to work with?)
· I am not considered to be among the experts on my child and his needs. Anyone who can write “a report” (of what type, it never was specified) on my child must hold more expertise than I do, and would be better equipped to provide information about whether my child would do well in a Montessori classroom where specific special education services are not provided.
By the way, it is very sad to me that even in the public schools, the Individuals with Disabilities Education Act (IDEA) ensures that parents are viewed as a part of the team of experts involved in a child’s life, but an independent Montessori school does not take this approach. Also, you should know that my child will be receiving special education services from his school district, including speech and occupational therapy, via IDEA, even if he is enrolled in a Montessori School. He is an unlikely candidate for a one-on-one assistant in either setting, so this wouldn’t be a concern or issue in the “match” at this point.
· As a parent, there is a considerable possibility that I would mislead the school into admitting my son even if that wasn’t going to serve his best interests, or the interests of the school.
· If my son were to be admitted, he would be considered a liability to the integrity of the community. Once I mentioned that my child is developmentally delayed, J. stopped listening and started talking. She wasn’t interested in hearing about what I knew about his challenges, let alone his gifts and strengths. She was clearly very focused and concerned about what level of “burden” he might be, and she clearly felt I wasn’t qualified to be a part of that conversation.
I am choosing a school for my child. I am going to be investing money in this school, and I am going to be handing over my precious little one and entrust a school with his care and education. I am having a lot of trouble imagining myself applying for my son’s admission into Summit Montessori School.
For all of my children, even those without special needs, I want them to participate in educational communities where individuals with special needs are seen not in simple terms as a liability, detraction from and burden to the community, but that they are seen as human beings who, like everyone, can participate meaningfully in the life of the community. I would hope that all of Summit Montessori School’s parents would want their children to learn to relate to people of all abilities, to be in an environment where they can practice how to be fully inclusive of people who have both the same and different strengths and challenges from them.
I've come to treat my son's special needs as a normal part of human diversity. In my life’s journey, I’ve learned that every human being has “special needs.” My son's needs are simply among the slightly less common. But some of those same needs are part of what affirmed for me that Montessori would be right for him.
The “no admittance for people like your son” sign has been posted on Summit Montessori’s door. What a loss for not only my son, but for the children in the school who lose out on the opportunity to learn to engage in a diverse and interesting human world.
I do want to send a special thank you to D. and one of the founders of the school (whose name I have forgotten, I am sorry to say), for asking me as I was stepping out of the building, what I thought of the school, and for taking the time to chat with me as I worked through the initial shock and confusion, as well as utter sadness, I had experienced during my conversation with J. The messages D. gave me were empathetic, considerate, and warmly welcoming, and the founder’s messages were cautiously welcoming. I also appreciate the founder offering that I could call either D. or herself if I wanted to arrange for an assessment for my son for entry into the school.
---------------------------------------------------
On a completely different note, I want to say that I am surprised at the reaction I received from the school’s business manager when I asked about staff compensation and financial aid. I told her I understood that asking about staff compensation was unusual for parents, and she agreed and asked me why I was interested. I told her that I want my children to go to a school with “happy, healthy, satisfied teachers” (and I should add “people who are highly qualified and who feel valued for their work”), and she said that made sense to her. I am just surprised more parents don’t ask. I was so glad to hear that your school strives to be very competitive in its salaries and compensation of teachers and staff.
I also asked her about financial assistance for two reasons. First, because Summit Montessori is by far the most expensive Montessori school I have found in the area (double the average cost for the half-day program), and I wanted to know what assistance might be available because we are a lower middle class family. Second, because the school’s current director and my tour guide had mentioned that the school strives to be diverse, I wondered if that included economic diversity. I asked the business manager what percentage of students receive financial aid, and she told me this number is confidential. However, she did give me the percentage of tuition that provides the financial aid budget. I thought you might be interested to know that it is unusual for a school to make confidential information on the approximate number of “scholarships” they award each year.
Notes From a Conversation With the Montessori School Director of Admissions (J.)
April 8, 2008
At first I wrote down J.’s exact words because I found them so striking, but mid-way through the conversation I became very uncomfortable with the tone of the dialogue, so I did not feel that verbatim notes were necessary for my decision about my son’s placement.
Me (going through the questions on the enclosed form): “What experience does the school have in working with children who have special needs?”
J.: “We don’t really have resources for children with special needs.”
Me: “So you don’t admit children with special needs?”
J.: “No. It’s not fair to the children. We want to do what’s fair for the children.” After a pause she added, “I mean, it depends on the need. Like, a child with cochlear implants. That kind of thing we can handle.” [Note: She did not say a “deaf child.” The implication is that only a child who has had implants would be acceptable. Not a deaf child. I also want to note that earlier in the conversation when I asked what type of scenario would signal a child and Montessori are mismatched, her immediate response was, “When a child can’t listen.”].
She continued: “This is something we tell parents over the phone before they come in, so it doesn’t surprise anyone.”
Me: “No one told me this over the phone.”
J.: “Did you talk about special needs on the phone?”
Me: “Yes, I did.”
What follows is the remainder of the conversation. I am writing this just a couple of hours after my visit, so my memories are still fresh and clear. I believe this is an accurate representation of what was said.
· J. asked me about my son’s special needs, though she didn’t really give me any time for a real explanation. I told her that he has global developmental delays, and was about to share more when she continued talking. J. said that she wasn’t qualified to “know what that means,” but that her sister (if I recall correctly) is a special education teacher and that her sister has told her (J.) that “there are high and low functioning” children with special needs and that “[Summit Montessori School faculty] should read all the reports very carefully.”
· J. asked me if I had “any reports” about my son (she did not specify what type of reports from whom). I told her that I do, and before I had a chance to ask what type of reports, she told me that the faculty would need to see these in order to make an admissions decision. I said something very close to the following words, which I chose very carefully at that point because I wanted to make sure that I was not misunderstanding. “You said earlier that the evaluation process for admission involves an approximately twenty-minute lesson and observation period with a teacher. Are you saying that for children with special needs, the admission decision is not made on this period of observation, but rather from reading reports about the child?”
· I remember the first part of J.’s answer clearly. “Yes.” After another pause, she said: “Well, it depends. We have got to read those reports. We’ve had parents come in and tell us their kids are low needs, and then they come in and the kids are all over the place. Parents don’t really see their children. We can’t just take what they say.” [Note: the tone of J.’s voice indicated to me that she was talking about parents misleading the school.]
“Yes, we usually do twenty minutes of assessment for a child without special needs, but for a child with special needs, it might be forty-five minutes. We would read those reports for sure. Because in the end, yes, parents are important. But this isn’t about the parents. This is about the children.” J. re-stated several times that “reports” would be vital, and she consistently downplayed the role of teacher observation in the assessment of my son’s match with the school. It was clear to her that written “reports” of any type would carry a heavy weight, and that the teacher observation was only a small part of the process.
· J. also referred to the school as not being “a place for special education. We’re just not able to do that.” It was unclear to me if she truly grasped Maria Montessori’s work as being “special education” in and of itself. She also didn’t give any indication that she remembered that Montessori’s first work was with children who had been identified as having “special needs.”
If I was looking for a special education class for my child, I would be looking elsewhere. In fact, my child qualifies for free early childhood education in a special education setting, which would obviously be an incentive for me to place him in such a setting. However, I demonstrated throughout my visit that I am an educated, thoughtful parent who is well versed in and committed to the Montessori model. I also demonstrated that I want an environment for my child where he can thrive.
Clearly, as a parent, I am concerned about the match between my son and any school. I don’t want him to be in a school where his needs can’t be met, and of course, as someone who values the Montessori philosophy, I am aware of the need to respect the community as a whole as well. I wouldn’t be taking the time to tour Montessori schools if I didn’t believe that my son could be “mainstreamed” into a Montessori school. I am completely confused as to why J. would assume I would want to set up my son for a bad experience like that, after observing me tour the school and ask thoughtful questions.
The messages that were communicated to me verbally (and nonverbally) during this conversation included:
April 8, 2008
At first I wrote down J.’s exact words because I found them so striking, but mid-way through the conversation I became very uncomfortable with the tone of the dialogue, so I did not feel that verbatim notes were necessary for my decision about my son’s placement.
Me (going through the questions on the enclosed form): “What experience does the school have in working with children who have special needs?”
J.: “We don’t really have resources for children with special needs.”
Me: “So you don’t admit children with special needs?”
J.: “No. It’s not fair to the children. We want to do what’s fair for the children.” After a pause she added, “I mean, it depends on the need. Like, a child with cochlear implants. That kind of thing we can handle.” [Note: She did not say a “deaf child.” The implication is that only a child who has had implants would be acceptable. Not a deaf child. I also want to note that earlier in the conversation when I asked what type of scenario would signal a child and Montessori are mismatched, her immediate response was, “When a child can’t listen.”].
She continued: “This is something we tell parents over the phone before they come in, so it doesn’t surprise anyone.”
Me: “No one told me this over the phone.”
J.: “Did you talk about special needs on the phone?”
Me: “Yes, I did.”
What follows is the remainder of the conversation. I am writing this just a couple of hours after my visit, so my memories are still fresh and clear. I believe this is an accurate representation of what was said.
· J. asked me about my son’s special needs, though she didn’t really give me any time for a real explanation. I told her that he has global developmental delays, and was about to share more when she continued talking. J. said that she wasn’t qualified to “know what that means,” but that her sister (if I recall correctly) is a special education teacher and that her sister has told her (J.) that “there are high and low functioning” children with special needs and that “[Summit Montessori School faculty] should read all the reports very carefully.”
· J. asked me if I had “any reports” about my son (she did not specify what type of reports from whom). I told her that I do, and before I had a chance to ask what type of reports, she told me that the faculty would need to see these in order to make an admissions decision. I said something very close to the following words, which I chose very carefully at that point because I wanted to make sure that I was not misunderstanding. “You said earlier that the evaluation process for admission involves an approximately twenty-minute lesson and observation period with a teacher. Are you saying that for children with special needs, the admission decision is not made on this period of observation, but rather from reading reports about the child?”
· I remember the first part of J.’s answer clearly. “Yes.” After another pause, she said: “Well, it depends. We have got to read those reports. We’ve had parents come in and tell us their kids are low needs, and then they come in and the kids are all over the place. Parents don’t really see their children. We can’t just take what they say.” [Note: the tone of J.’s voice indicated to me that she was talking about parents misleading the school.]
“Yes, we usually do twenty minutes of assessment for a child without special needs, but for a child with special needs, it might be forty-five minutes. We would read those reports for sure. Because in the end, yes, parents are important. But this isn’t about the parents. This is about the children.” J. re-stated several times that “reports” would be vital, and she consistently downplayed the role of teacher observation in the assessment of my son’s match with the school. It was clear to her that written “reports” of any type would carry a heavy weight, and that the teacher observation was only a small part of the process.
· J. also referred to the school as not being “a place for special education. We’re just not able to do that.” It was unclear to me if she truly grasped Maria Montessori’s work as being “special education” in and of itself. She also didn’t give any indication that she remembered that Montessori’s first work was with children who had been identified as having “special needs.”
If I was looking for a special education class for my child, I would be looking elsewhere. In fact, my child qualifies for free early childhood education in a special education setting, which would obviously be an incentive for me to place him in such a setting. However, I demonstrated throughout my visit that I am an educated, thoughtful parent who is well versed in and committed to the Montessori model. I also demonstrated that I want an environment for my child where he can thrive.
Clearly, as a parent, I am concerned about the match between my son and any school. I don’t want him to be in a school where his needs can’t be met, and of course, as someone who values the Montessori philosophy, I am aware of the need to respect the community as a whole as well. I wouldn’t be taking the time to tour Montessori schools if I didn’t believe that my son could be “mainstreamed” into a Montessori school. I am completely confused as to why J. would assume I would want to set up my son for a bad experience like that, after observing me tour the school and ask thoughtful questions.
The messages that were communicated to me verbally (and nonverbally) during this conversation included:
· Children with special needs are not welcome. J. does not want me to apply for my son’s admittance. If I want to push it, I might be able to get admittance for my son, but first I need to prove that he wouldn’t “be a problem.”
· As a child with special needs, my child would be under a level of scrutiny in the admissions process and in the classroom that other children in the school do not experience. (By the way, can you imagine a job interview in which you had to sit there and talk about your own special needs/challenges/etc. for twenty minutes...wouldn't you end up sounding like an impossible person to work with?)
· I am not considered to be among the experts on my child and his needs. Anyone who can write “a report” (of what type, it never was specified) on my child must hold more expertise than I do, and would be better equipped to provide information about whether my child would do well in a Montessori classroom where specific special education services are not provided.
By the way, it is very sad to me that even in the public schools, the Individuals with Disabilities Education Act (IDEA) ensures that parents are viewed as a part of the team of experts involved in a child’s life, but an independent Montessori school does not take this approach. Also, you should know that my child will be receiving special education services from his school district, including speech and occupational therapy, via IDEA, even if he is enrolled in a Montessori School. He is an unlikely candidate for a one-on-one assistant in either setting, so this wouldn’t be a concern or issue in the “match” at this point.
· As a parent, there is a considerable possibility that I would mislead the school into admitting my son even if that wasn’t going to serve his best interests, or the interests of the school.
· If my son were to be admitted, he would be considered a liability to the integrity of the community. Once I mentioned that my child is developmentally delayed, J. stopped listening and started talking. She wasn’t interested in hearing about what I knew about his challenges, let alone his gifts and strengths. She was clearly very focused and concerned about what level of “burden” he might be, and she clearly felt I wasn’t qualified to be a part of that conversation.
I am choosing a school for my child. I am going to be investing money in this school, and I am going to be handing over my precious little one and entrust a school with his care and education. I am having a lot of trouble imagining myself applying for my son’s admission into Summit Montessori School.
For all of my children, even those without special needs, I want them to participate in educational communities where individuals with special needs are seen not in simple terms as a liability, detraction from and burden to the community, but that they are seen as human beings who, like everyone, can participate meaningfully in the life of the community. I would hope that all of Summit Montessori School’s parents would want their children to learn to relate to people of all abilities, to be in an environment where they can practice how to be fully inclusive of people who have both the same and different strengths and challenges from them.
I've come to treat my son's special needs as a normal part of human diversity. In my life’s journey, I’ve learned that every human being has “special needs.” My son's needs are simply among the slightly less common. But some of those same needs are part of what affirmed for me that Montessori would be right for him.
The “no admittance for people like your son” sign has been posted on Summit Montessori’s door. What a loss for not only my son, but for the children in the school who lose out on the opportunity to learn to engage in a diverse and interesting human world.
I do want to send a special thank you to D. and one of the founders of the school (whose name I have forgotten, I am sorry to say), for asking me as I was stepping out of the building, what I thought of the school, and for taking the time to chat with me as I worked through the initial shock and confusion, as well as utter sadness, I had experienced during my conversation with J. The messages D. gave me were empathetic, considerate, and warmly welcoming, and the founder’s messages were cautiously welcoming. I also appreciate the founder offering that I could call either D. or herself if I wanted to arrange for an assessment for my son for entry into the school.
---------------------------------------------------
On a completely different note, I want to say that I am surprised at the reaction I received from the school’s business manager when I asked about staff compensation and financial aid. I told her I understood that asking about staff compensation was unusual for parents, and she agreed and asked me why I was interested. I told her that I want my children to go to a school with “happy, healthy, satisfied teachers” (and I should add “people who are highly qualified and who feel valued for their work”), and she said that made sense to her. I am just surprised more parents don’t ask. I was so glad to hear that your school strives to be very competitive in its salaries and compensation of teachers and staff.
I also asked her about financial assistance for two reasons. First, because Summit Montessori is by far the most expensive Montessori school I have found in the area (double the average cost for the half-day program), and I wanted to know what assistance might be available because we are a lower middle class family. Second, because the school’s current director and my tour guide had mentioned that the school strives to be diverse, I wondered if that included economic diversity. I asked the business manager what percentage of students receive financial aid, and she told me this number is confidential. However, she did give me the percentage of tuition that provides the financial aid budget. I thought you might be interested to know that it is unusual for a school to make confidential information on the approximate number of “scholarships” they award each year.
Tuesday, April 1, 2008
Have they "gone too far?" Um...how could you even ask that?
I am heading to bed, but we are staying at G's parents house tonight and Boston's Fox25 news is on.As I am heading off, I hear the headliners, including: "Have they finally gone too far? A child is in intensive care after being pushed down the stairs at school by a bully."
When does it take a child ending up in intensive care before a bully has gone too far? This is very sad.
Every child in our country has a right to access education, free from bullying and harrassment.
We, as a nation, have a lot of work left to do in this arena.
(By the way, from what I gather, this child also has some disabilities and was receiving special education services at his school. This certainly hits some hot buttons in my world.)
Thursday, March 20, 2008
Lost Videos
So I discovered after my last post (which I wrote over several weeks before posting), that all videos by Christschool have been taken off You Tube by Christschool himself. I don't know what happened, but I know for a very long time that he has taken a lot of grief from You Tube users who hurl insults for entertainment.
In any case, I am so saddened by the loss of his videos, which were a major piece of my writings below. I do hope that you can perhaps get some idea of what the videos were about by the context of my posts. But after all the time I have put into this, I admit that this is a huge let down.
So sad.
In any case, I am so saddened by the loss of his videos, which were a major piece of my writings below. I do hope that you can perhaps get some idea of what the videos were about by the context of my posts. But after all the time I have put into this, I admit that this is a huge let down.
So sad.
The Last of My Autistic Allie Series...For Now
The following post is the final post for now from my series called "Journey of an Aspiring Allie." If you have just started reading, I hope you will go back and read the series in order. The first post of the series was on 1/27. The series is in the form of a guided video tour. It's just the way MY mind works.
I do also hope you will watch the videos exactly as posted in the text, as a break before reading further. I had attempted to learn to imbed videos in my posts but was unable to do so. Like recent posts in this series, this post contains a number of videos of varying lengths. I will wait a week or so to post again so that I can give folks time to get through all this.
I suspect that you may find it possible to get through this post only in parts, depending on how much time you have available to you at any given moment. __________________________________________________________
JOURNEY OF AN ASPIRING ALLIE, FINAL SERIES POST (FOR NOW)
So this is the deal:
This matters.
This post is about the difference that how we view and respond to neurological diversity makes.
There is a school in MA, the state where I am now living, that practices among other abuses, electric shock behavioral management on those children with "mental retardation," "autism," and other related "issues."
http://www.youtube.com/watch?v=HvLXwlr0S-U
http://www.youtube.com/watch?v=s9-xXfgQiTU
What types of behaviors are being managed in this fashion? The "worst of the worst?" If you don't have time to watch the whole video that follows, watch the first 2 minutes and fifty five seconds, so you get the context of what the video is talking about, and then the last part of the video, 8:20-9:59.
We're talking about electric shock for hand flapping, as an example. Yes, that is right. Shocking children when they flap their hands as they speak. The video clip at the end is directly from the school itself.
http://www.youtube.com/watch?v=ghheuvDQD2Q
Even non-autistic people occasionally flap their hands. Remember this video, featuring Bill Gates? http://www.youtube.com/watch?v=f15JexiQt4U Do we or do we not live in the 21st century?!
This is not an issue that can be isolated, however, to the abuses of just one school, an issue affecting a minority of children and individuals. This is a part of an ongoing but historic disregard for the humanity of individuals who do not conform to the "norm" and/or individuals with "disabilities."
The following is a video on the work of a man named Ivaar Lovaas. His story is one of a historical nature, but it continues to play out in our current times. Ivaar Lovaas pioneered an autism "treatment protocol," known as Applied Behavioral Analysis (ABA), that is still widely used and-- despite many controversies- very much considered "mainstream."
http://www.youtube.com/watch?v=SuohTq7zw0I
The breadth and scope of impact from this disregard for humanity can not be covered even in a series of posts. But what I can do is at least indicate the severity of the matter. This is where the pieces start to come together in a big way. Check out the following written tribute, largely highlighting DAN (Defeat Autism Now) from a magazine for which I have deep respect and for which I have even spent four or five years of my life volunteering. Note the connection between ABA and DAN: http://www.mothering.com/sections/news_bulletins/november2006.html.
I respectfully disagree with a great deal of the stuff written in that tribute.
On rare but significant occasion, children have died because of DAN-recommended treatment protocols (take chelation...a response to concerns that heavy metals in vaccines were causing autism). Children have been subjected to scientifically unsound or experimental and very stressful treatments (take, for example, medicinal regimens involving countless injected and oral supplements and medication...some children taking 40, 50, even 6o medications and supplements daily...along with all the side effects. Or, as another example, take hyperbaric oxygen chambers).
When I can stop crying long enough, I can sometimes laugh at the absurdity:
http://www.youtube.com/watch?v=XAlfXQTOBcg
After all this, one has to return to the question, just what is it we are trying to defeat, anyway? Far from a turn toward reason, this question leads straight to some of the most dark and frightening aspects of the entire conversation. The following video is a marketing tool for an organization called "Autism Speaks," which contrary to its name, is not the voice of autistics speaking out in any form (if you want to know why I say that, see: http://autisticbfh.blogspot.com/2008/01/autism-speaks-silences-autistic-child.html and http://autism.about.com/b/2007/06/07/autism-speaks-problems-grow.htm and http://www.autism-hub.co.uk/autism-speaks-dont-speak-for-me/index.php. Otherwise, proceed to the video posted below).
Last I heard, unlike the largest Down Syndrome organization in the United States, Autism Speaks (which is the largest autism organization in the United States), does not allow autistic adults to serve on its board or participate in its organization in any meaningful way other than to present to the outside world a negative view of their condition.
http://www.youtube.com/watch?v=FDMMwG7RrFQ
Now watch this. It is, at least, the voice of one autistic adult:
http://www.youtube.com/watch?v=bYo3UW0nwEA
And think about this (image...not a video): http://autistics.org/images/lotto-numbers.jpg
But worse, while this video is a powerful marketing tool for Autism Speaks, it is devastation rhetoric (to which young people as well as parents of newly diagnosed children are especially vulnerable). It contributes to the pervasive negative societal images of autistics. It contributes to those conditions in our culture that create bullying and other peer-to-peer abuse for autistics. And within days after it came out, at least one autistic child was killed by her mother, possibly after viewing the video.
Autism is not a "painful disease" as it is characterized in this film. It is a condition that makes some neurotypical folks uncomfortable, but it also represents another way of being in this world. It is wonderful there are so many diverse ways we can be present in our bodies and in our environments. What are we so afraid of? Handflapping? Seriously?!
I ask again, what is it we are trying to defeat?
Am I anti-cure? I don't know. But I do know that it matters how we view autism. It matters for all of us.
I do also hope you will watch the videos exactly as posted in the text, as a break before reading further. I had attempted to learn to imbed videos in my posts but was unable to do so. Like recent posts in this series, this post contains a number of videos of varying lengths. I will wait a week or so to post again so that I can give folks time to get through all this.
I suspect that you may find it possible to get through this post only in parts, depending on how much time you have available to you at any given moment. __________________________________________________________
JOURNEY OF AN ASPIRING ALLIE, FINAL SERIES POST (FOR NOW)
So this is the deal:
This matters.
This post is about the difference that how we view and respond to neurological diversity makes.
There is a school in MA, the state where I am now living, that practices among other abuses, electric shock behavioral management on those children with "mental retardation," "autism," and other related "issues."
http://www.youtube.com/watch?v=HvLXwlr0S-U
http://www.youtube.com/watch?v=s9-xXfgQiTU
What types of behaviors are being managed in this fashion? The "worst of the worst?" If you don't have time to watch the whole video that follows, watch the first 2 minutes and fifty five seconds, so you get the context of what the video is talking about, and then the last part of the video, 8:20-9:59.
We're talking about electric shock for hand flapping, as an example. Yes, that is right. Shocking children when they flap their hands as they speak. The video clip at the end is directly from the school itself.
http://www.youtube.com/watch?v=ghheuvDQD2Q
Even non-autistic people occasionally flap their hands. Remember this video, featuring Bill Gates? http://www.youtube.com/watch?v=f15JexiQt4U Do we or do we not live in the 21st century?!
This is not an issue that can be isolated, however, to the abuses of just one school, an issue affecting a minority of children and individuals. This is a part of an ongoing but historic disregard for the humanity of individuals who do not conform to the "norm" and/or individuals with "disabilities."
The following is a video on the work of a man named Ivaar Lovaas. His story is one of a historical nature, but it continues to play out in our current times. Ivaar Lovaas pioneered an autism "treatment protocol," known as Applied Behavioral Analysis (ABA), that is still widely used and-- despite many controversies- very much considered "mainstream."
http://www.youtube.com/watch?v=SuohTq7zw0I
The breadth and scope of impact from this disregard for humanity can not be covered even in a series of posts. But what I can do is at least indicate the severity of the matter. This is where the pieces start to come together in a big way. Check out the following written tribute, largely highlighting DAN (Defeat Autism Now) from a magazine for which I have deep respect and for which I have even spent four or five years of my life volunteering. Note the connection between ABA and DAN: http://www.mothering.com/sections/news_bulletins/november2006.html.
I respectfully disagree with a great deal of the stuff written in that tribute.
On rare but significant occasion, children have died because of DAN-recommended treatment protocols (take chelation...a response to concerns that heavy metals in vaccines were causing autism). Children have been subjected to scientifically unsound or experimental and very stressful treatments (take, for example, medicinal regimens involving countless injected and oral supplements and medication...some children taking 40, 50, even 6o medications and supplements daily...along with all the side effects. Or, as another example, take hyperbaric oxygen chambers).
When I can stop crying long enough, I can sometimes laugh at the absurdity:
http://www.youtube.com/watch?v=XAlfXQTOBcg
After all this, one has to return to the question, just what is it we are trying to defeat, anyway? Far from a turn toward reason, this question leads straight to some of the most dark and frightening aspects of the entire conversation. The following video is a marketing tool for an organization called "Autism Speaks," which contrary to its name, is not the voice of autistics speaking out in any form (if you want to know why I say that, see: http://autisticbfh.blogspot.com/2008/01/autism-speaks-silences-autistic-child.html and http://autism.about.com/b/2007/06/07/autism-speaks-problems-grow.htm and http://www.autism-hub.co.uk/autism-speaks-dont-speak-for-me/index.php. Otherwise, proceed to the video posted below).
Last I heard, unlike the largest Down Syndrome organization in the United States, Autism Speaks (which is the largest autism organization in the United States), does not allow autistic adults to serve on its board or participate in its organization in any meaningful way other than to present to the outside world a negative view of their condition.
http://www.youtube.com/watch?v=FDMMwG7RrFQ
Now watch this. It is, at least, the voice of one autistic adult:
http://www.youtube.com/watch?v=bYo3UW0nwEA
And think about this (image...not a video): http://autistics.org/images/lotto-numbers.jpg
But worse, while this video is a powerful marketing tool for Autism Speaks, it is devastation rhetoric (to which young people as well as parents of newly diagnosed children are especially vulnerable). It contributes to the pervasive negative societal images of autistics. It contributes to those conditions in our culture that create bullying and other peer-to-peer abuse for autistics. And within days after it came out, at least one autistic child was killed by her mother, possibly after viewing the video.
Autism is not a "painful disease" as it is characterized in this film. It is a condition that makes some neurotypical folks uncomfortable, but it also represents another way of being in this world. It is wonderful there are so many diverse ways we can be present in our bodies and in our environments. What are we so afraid of? Handflapping? Seriously?!
I ask again, what is it we are trying to defeat?
Am I anti-cure? I don't know. But I do know that it matters how we view autism. It matters for all of us.
Wednesday, February 13, 2008
And to break the theme of my last few posts...
...since I don't have time to finish my autistic allies series right now but don't really want a diary-style blog...
I will post some shameless political evangalism.
Now I feel I must say that I don't follow politics much these days. But a couple of years before the name "Obama" started getting tossed about in the public arena, before many of you probably had heard of Barack Obama, I saw him speak and I said, "This guy ought to be the president of our great country." I have never been so stirred about any politician in the past, including Clinton. I waffled a bit early on in the campaigns, but the specific plans coming from Obama continue to be the better in my humble opinion, than any candidate republican or democrat.
Two of the many reasons I love Obama (watch the videos in the links...most are very short):
http://www.barackobama.com/issues/healthcare/
http://www.barackobama.com/issues/disabilities/
Also check out the following, but once you click into the videos, watch the one called "Our Kids, Our Future" instead of or in addition to the main one in the link:
http://origin.barackobama.com/issues/education/
Having said all that, just for fun I am sure most of you have seen by now:
http://www.dipdive.com/
But did you see this:
http://www.youtube.com/watch?v=3gwqEneBKUs -- "like hope, but different"
Love, masasa
I will post some shameless political evangalism.
Now I feel I must say that I don't follow politics much these days. But a couple of years before the name "Obama" started getting tossed about in the public arena, before many of you probably had heard of Barack Obama, I saw him speak and I said, "This guy ought to be the president of our great country." I have never been so stirred about any politician in the past, including Clinton. I waffled a bit early on in the campaigns, but the specific plans coming from Obama continue to be the better in my humble opinion, than any candidate republican or democrat.
Two of the many reasons I love Obama (watch the videos in the links...most are very short):
http://www.barackobama.com/issues/healthcare/
http://www.barackobama.com/issues/disabilities/
Also check out the following, but once you click into the videos, watch the one called "Our Kids, Our Future" instead of or in addition to the main one in the link:
http://origin.barackobama.com/issues/education/
Having said all that, just for fun I am sure most of you have seen by now:
http://www.dipdive.com/
But did you see this:
http://www.youtube.com/watch?v=3gwqEneBKUs -- "like hope, but different"
Love, masasa
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