My 17 year-old son is coming home to visit this weekend, as he does every two or three weeks. It takes a day to prepare for a weekend visit, and a day to recover; the preparation is logistical, the recovery is emotional.
Terry has severe autism. He speaks in one and two word combinations, supplemented by sign language, and the use of a voice-output device called a ChatPC. He can be aggressive and self-injurious, and has severe obsessive-compulsive disorder. Indeed, it is usually a thwarted OCD issue that triggers aggression or self-injurious behaviors (SIBs.) These issues include an inability to let anyone move anything or rearranging dust specks on the floor or ground (including while crossing the street).
Nonetheless, Terry, in many ways, lives a rich life. He enjoys biking, ice skating, swimming, and other activities. He has recently discovered watching Thomas the Tank Engine clips on YouTube. But he does not spontaneously initiate most activities, and those he does frequently spiral into OCD binges. As a result he needs and welcomes external structure in the form of picture schedules to give him something to do, and a sticker system to help him control his reactions.
Terry's need for structure, coupled with an attention span that varies from 30 seconds to 20 minutes, means that a weekend home visit requires organizing literally dozens of activities, ranging from playing with play doh to going out to dinner. Each activity has its own picture, and all required materials must be immediately at hand when embarking on it. There can be no fumbling to find the Lincoln Logs, there must be no danger that the restaurant is closed. When Terry goes to bed I am totally drained, but must remember to put together the new schedule for the morning before I go to bed.
On Monday morning, we are always late for school as Terry drags out the routine to wrap his mind around the return to school. I try to keep him moving forward without pushing too hard, which would only result in a meltdown. Monday is difficult for anyone, but more so when know you know you won't be back for a while. After I finally drop him at school, I inevitably stop at Dunkin' Donuts or Bickfords to begin the process of decompression and re-entry.
I love my son, and I treasure the look of joy on his face when he is involved in something he loves. But the reality is that he needs a staff.
Thursday, March 5, 2009
Monday, March 2, 2009
Low expectations and limited resources
My daughter just decided which college to accept -- not usually a terribly earth shattering occurrence for a high school senior. But nine years ago the director of special education in my town told me "not everyone graduates from high school."
My conversation with the special ed. director was triggered by a study I had undertaken on outcomes for special education in our town, an upscale bedroom community north of Boston. At the time my daughter was in what was then known as a ".3 placement," meaning she spent about 40% of her time outside the regular classroom. There were 12 other students in the "substantially separate" classroom, about normal enrollment. Yet that year only 1 student in a .3 placement graduated from the high school. It was when I brought this number up that I was told not everyone graduates.
What astonished me about the experience was the off-handedness of the comment. Clearly, the director did not see this as a reason to evaluate the effectiveness of programming. Rather, she had no problem with looking at 13 second and third graders and assuming almost none of them would graduate. Even more disturbing was the fact that this woman was a special educator; one might not be so surprised to discover such an attitude in a general educator. Further, this was a district in which regular education was highly structured from the early grades to produce optimum levels of achievement in the upper grades. Our town was like Lake Wobegon; all the children were above average.
Not long after that, I attended a presentation to the school committee given by the assistant superintendent of schools. Massachusetts had begun high-stakes testing of students, and the assistant superintendent was presenting an analysis of the results for our town. His level of analysis went as far as determining the educational level of the parents of students at each level of achievement. Yet he had entirely missed the fact that 80% of special education students at the high school had failed the math assessment, a fact that I brought up during the public comment period. His analysis was focused on how to maximize the percentage of students in the top level of achievement, not how to minimize the percentage in the bottom level.
The good news, however, was that there were those in the system unwilling to accept the status quo. My daughter's teacher did not know the outcomes for the students she had taught years before, and was troubled when I told her about the graduation rates. The school committee was very disturbed at the failure rate of special education students, once they learned of it. Some changes have taken place. There are programs in place now to provide for students at the middle and high schools who in earlier years might have wound up in out-of-district placements.
Yet I had received my wake-up call. My daughter's education was my responsibility, no matter how good the reputation of the district or what the letter of the law said. The summer between third and fourth grade she and I worked three hours a day, six days a week. She caught up almost a full year in math that summer, and moved into a regular classroom with resource support that fall. Without making that move, I feared she would never get the exposure to the general curriculum she needed. We continued to work in the summers as the years went on. In middle school I would frequently spend three hours preparing a study guide if she had a quiz or test. The reality was that the special education team was spread too thin to provide the support she (and all the other students with disabilities) needed. By middle school, the pressure of high-stakes testing had insured students with disabilities were being exposed to the regular curriculum, but it had done little to provide them adequate resources to meet the higher demands.
In high school my daughter moved to a private school. In a smaller, more nurturing environment she could function more independently, with less support from me. By that time I knew she could pass the high-stakes tests if I maintained my level of support, but I feared the price would be a total aversion to education and learning. Further, the emphasis on testing meant she had little time to devote to the fine and performing arts she loved, and which were an area of strength.
My daughter has achieved a lot, through her own hard work and the work of many others, including the special educators and general ed. teachers she had in the public schools. But the program put in place for her by the school system would never have been sufficient on its own. A combination of low expectations on the part of some professionals, and inadequate resources provided to others, meant that her success also required an infusion of vast amounts of time and money on the part of her family.
What happens to those whose families can't provide it?
My conversation with the special ed. director was triggered by a study I had undertaken on outcomes for special education in our town, an upscale bedroom community north of Boston. At the time my daughter was in what was then known as a ".3 placement," meaning she spent about 40% of her time outside the regular classroom. There were 12 other students in the "substantially separate" classroom, about normal enrollment. Yet that year only 1 student in a .3 placement graduated from the high school. It was when I brought this number up that I was told not everyone graduates.
What astonished me about the experience was the off-handedness of the comment. Clearly, the director did not see this as a reason to evaluate the effectiveness of programming. Rather, she had no problem with looking at 13 second and third graders and assuming almost none of them would graduate. Even more disturbing was the fact that this woman was a special educator; one might not be so surprised to discover such an attitude in a general educator. Further, this was a district in which regular education was highly structured from the early grades to produce optimum levels of achievement in the upper grades. Our town was like Lake Wobegon; all the children were above average.
Not long after that, I attended a presentation to the school committee given by the assistant superintendent of schools. Massachusetts had begun high-stakes testing of students, and the assistant superintendent was presenting an analysis of the results for our town. His level of analysis went as far as determining the educational level of the parents of students at each level of achievement. Yet he had entirely missed the fact that 80% of special education students at the high school had failed the math assessment, a fact that I brought up during the public comment period. His analysis was focused on how to maximize the percentage of students in the top level of achievement, not how to minimize the percentage in the bottom level.
The good news, however, was that there were those in the system unwilling to accept the status quo. My daughter's teacher did not know the outcomes for the students she had taught years before, and was troubled when I told her about the graduation rates. The school committee was very disturbed at the failure rate of special education students, once they learned of it. Some changes have taken place. There are programs in place now to provide for students at the middle and high schools who in earlier years might have wound up in out-of-district placements.
Yet I had received my wake-up call. My daughter's education was my responsibility, no matter how good the reputation of the district or what the letter of the law said. The summer between third and fourth grade she and I worked three hours a day, six days a week. She caught up almost a full year in math that summer, and moved into a regular classroom with resource support that fall. Without making that move, I feared she would never get the exposure to the general curriculum she needed. We continued to work in the summers as the years went on. In middle school I would frequently spend three hours preparing a study guide if she had a quiz or test. The reality was that the special education team was spread too thin to provide the support she (and all the other students with disabilities) needed. By middle school, the pressure of high-stakes testing had insured students with disabilities were being exposed to the regular curriculum, but it had done little to provide them adequate resources to meet the higher demands.
In high school my daughter moved to a private school. In a smaller, more nurturing environment she could function more independently, with less support from me. By that time I knew she could pass the high-stakes tests if I maintained my level of support, but I feared the price would be a total aversion to education and learning. Further, the emphasis on testing meant she had little time to devote to the fine and performing arts she loved, and which were an area of strength.
My daughter has achieved a lot, through her own hard work and the work of many others, including the special educators and general ed. teachers she had in the public schools. But the program put in place for her by the school system would never have been sufficient on its own. A combination of low expectations on the part of some professionals, and inadequate resources provided to others, meant that her success also required an infusion of vast amounts of time and money on the part of her family.
What happens to those whose families can't provide it?
Sunday, March 1, 2009
Baking day
Today was a baking day. An e-mail came from my son's residential placement, asking for more bread, pancakes and buckwheat cakes. The residence, with its large cafeteria, cannot handle his highly individualized diet.
Terry has been on a special diet for 12 years now. It is not a panacea, it does not remove his autistic symptoms. But it makes life smoother. It takes away the red ears and cheeks, the hysterical "Jekyll and Hyde" laughter, helps minimize the hyperactivity and aggression.
Baking day means mixing a large batch of bread flour -- white rice flour, brown rice flour, tapioca flour, potato starch -- and then mixing and baking loaves one at a time. A batch will make four loaves. Today I am lucky; I only have three to make. When the schedule is tight, I might make seven loaves in two days.
At times in life I have had romantic notions about getting back to a simpler time. And there is no denying that the smell of fresh bread has an atavistic quality that fulfills a deep yearning for the comforts of home and hearth -- even when the bread is gluten-free, casein-free, corn-free, sugar-free and soy-free. But the truth is that, for our ancestors, baking day was just plain work. And that's my experience, too. At least I have a Kitchen-aid mixer. Not to mention things like store-bought baking powder, which I learned recently is a relatively recent innovation that contributes much to the quality of the final product.
As with many things in life, I have decided this is another example of God's wonderful sense of irony.
Tomorrow I make pancakes and buckwheat cakes.
Terry has been on a special diet for 12 years now. It is not a panacea, it does not remove his autistic symptoms. But it makes life smoother. It takes away the red ears and cheeks, the hysterical "Jekyll and Hyde" laughter, helps minimize the hyperactivity and aggression.
Baking day means mixing a large batch of bread flour -- white rice flour, brown rice flour, tapioca flour, potato starch -- and then mixing and baking loaves one at a time. A batch will make four loaves. Today I am lucky; I only have three to make. When the schedule is tight, I might make seven loaves in two days.
At times in life I have had romantic notions about getting back to a simpler time. And there is no denying that the smell of fresh bread has an atavistic quality that fulfills a deep yearning for the comforts of home and hearth -- even when the bread is gluten-free, casein-free, corn-free, sugar-free and soy-free. But the truth is that, for our ancestors, baking day was just plain work. And that's my experience, too. At least I have a Kitchen-aid mixer. Not to mention things like store-bought baking powder, which I learned recently is a relatively recent innovation that contributes much to the quality of the final product.
As with many things in life, I have decided this is another example of God's wonderful sense of irony.
Tomorrow I make pancakes and buckwheat cakes.
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