Special Education Law Blog

Documentaries Accurately Portray Disability-Related Issues

Although there have been recent complaints that both actors and characters with disabilities are underrepresented on television, two excellent documentaries about disabilities have aired in the past year.  Journey into Dyslexia, which appeared on HBO in May of 2011, profiles students and adults who have dyslexia.  According to the HBO web page, many of the adult professionals who struggled to learn in school now consider their dyslexia a gift and a defining reason for their successes.   Critics called the straightforward interviews with the persons with dyslexia, including children, the most powerful part of the documentary, which was made by Academy-award winning filmmakers Alan and Susan Raymond.  Among those interviewed are a professor at Johns Hopkins University, inventors, entrepreneurs, and consumer advocate Erin Brockovich.  Additionally, the HBO website accompanying this documentary is rich with information on dyslexia. Another documentary from the Sundance film festival on dyslexia is called The D Word.

An Important Milestone in a Student's Life by Marilyn Green-Rebnord

Some years back, The Onion, a satirical publication, announced in a headline, “Miracle of Birth Occurs for 83 Billionth Time.” At our older son’s Bar Mitzvah, my husband used this article to explain that we perhaps take for granted the milestones our children reach.  We forget that each and every birth, and each and every event in that child’s life, is unique and special.  Each bris, each first communion, each first tooth, each first day of kindergarten are all miraculous.  We’ve somehow lost our wonder in the ordinariness of life.  And yet, how much greater is the miracle when it is a child who has been ill, or who has a disability, or whom for whatever reason there was doubt that he or she would reach a particular milestone?

College Admissions for a Student with Special Needs: Waiting to Exhale—for Four Years by Marilyn Green-Rebnord

 Anyone who has helped a teenager through the college selection process knows what an extraordinary stressful time it can be.  The competition among the students (and their parents!) is breathtaking.  My husband and I found it extremely difficult with our oldest son, who is a strong, “traditional” student.  But to navigate the college selection process with a special needs student is a whole different ball game with an entirely different bucket list of worries and “to-do’s.”

 I know that we are blessed that we were even able to consider college for our now 18-year-old son, because only about a third of students with disabilities attend college according to the US Department of Education in 2003 .  Whereas public high schools are required by law to provide individualized educations for students with special needs, colleges are required to make only “reasonable accommodations” for qualified students. What this means varies wildly from school to school, and there is a lack of terminology to describe support programs offered by colleges.  According to the Wall Street Journal, at a minimum, schools will offer “basic programs,” which offer only the accommodations required by law; eg, un-timed testing or note-taking help.  “Coordinated services” provide at least one trained staffer and additional supports such as study skills classes, tutors, and other services.  “Structured” or “proactive” programs charge additional fees, often involve contracts, and trained staffers who work with the students.

 In general, we found the various glossy brochures mailed out by schools fairly useless—all the students were happy, the sun always shone, etc, etc, etc.  What we did rely on, however, was the disability information published on college web sites.  We found that schools that had pretty skimpy information about disability support on the web site offered fairly skimpy services when we met with their disability offices in person.  And we met with each and every disability office at schools our son was considering.  In doing so, we were able to scratch off the list fairly quickly (though painfully) some small private schools in which our son was interested.  One office felt that they could have a staff person meet with our son every other week (wholly inadequate for a student with significant organizational deficits); at another school the disability coordinator appeared to be unfamiliar with our son’s diagnosis and unaware of what it meant for him. 

 Like every other parent/student, we purchased the different college guides that describe the various advantages and disadvantages of different schools—which schools students rated the most highly, which had the most accessible faculty, which had the best food, which had the worst dorms, best parties, you get it.  But we also purchased the K & W Guide to College for Students with Learning Disabilities, which rated different disability programs at different schools.   Given the distance and our son’s needs, we were utterly unwilling to consider a school on the East coast that our son was interested in and is now ultimately attending until we saw that it had a particularly high rating from the K & W College Guide.  

I’m sure you’ve heard tales of those mythical students who are disciplined and can get through the application process relatively on their own.  I will tell you that our older son was just such a student.  But our youngest . . . oh well . . . Actually, the hardest part of the application process was deciding whether or not our son should disclose his disability.  (Students are not required to do so; colleges are of course not allowed to discriminate against students who do identify their special needs.)  Although our high school transition coordinator recommends always disclosing, we were on a fence.  But during one particularly interminable college recruiting program (again, our students are always happy, the sun is always shining, etc), I reacted to the admission rep’s statements about respecting and seeking diversity.  I figured we would call them on it. I suggested, and my husband and son agreed, to disclose the disability.  If a school were going to be bothered by the disability, it wasn’t a school our son should be attending anyway.  Consequently, my son wrote about his diagnosis in his Common Application essay, and I’m happy to report that the schools didn’t blink. 

 Last week my husband and I drove to the East coast to drop our son off at school. My older son’s university had offered a program to the parents during freshman orientation on “Letting Go.” Parents were told that they needed to trust that they have raised their children well, that they are prepared for college, and that they will thrive.  The days of “helicopter parenting” must end.  (I told my husband that I would walk out of any similar session if offered at our younger son’s school--fortunately, it wasn’t.)  My final act of loving “helicoptering” (if that can be a noun) was to unpack and organize my son’s dorm room.  This week a co-worker, who had also just dropped off her freshman son, laughed about moms who organized their freshman’s shirts by color. Guilty as charged. And yes, my husband set up the wireless for the laptop.

 My husband and I are now home.  Our son is out East without us, and it’s up to him now to make things work. He has survived his first earthquake and his first hurricane (two events it had never occurred to me to worry about—who knew?).  He’s excited and nervous about his new adventure.  We are scared, hopeful, and proud.  And missing him, too.

 

Parents of children with special needs either love or hate Emily Perl Kingsley’s poem, “Welcome to Holland” (http://www.our-kids.org/archives/Holland.html).  Like everything else involved in raising a child with a disability, parents can find themselves in Holland, even while searching for a college.  As for my husband and me, we’re planning to go to Italy this spring—for real, this time.    

 

Marilyn Green-Rebnord

 

http://www.boston.com/news/education/higher/articles/2006/03/30/determination_paves_difficult_path_to_college/

 

http://online.wsj.com/article/SB122160388151245179.html

 

http://www.amazon.com/Colleges-Students-Disabilities-Attention-Princeton/dp/0375762205

http://www.our-kids.org/archives/Holland.html

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Waiting to Exhale—for Four Years

 

Anyone who has helped a teenager through the college selection process knows what an extraordinary stressful time it can be.  The competition among the students (and their parents!) is breathtaking.  My husband and I found it extremely difficult with our oldest son, who is a strong, “traditional” student.  But to navigate the college selection process with a special needs student is a whole different ball game with an entirely different bucket list of worries and “to-do’s.”

 

I know that we are blessed that we were even able to consider college for our now 18-year-old son, because only about a third of students with disabilities attend college according to the US Department of Education in 2003.  Whereas public high schools are required by law to provide individualized educations for students with special needs, colleges are required to make only “reasonable accommodations” for qualified students. What this means varies wildly from school to school, and there is a lack of terminology to describe support programs offered by colleges.  According to the Wall Street Journal, at a minimum, schools will offer “basic programs,” which offer only the accommodations required by law; eg, un-timed testing or note-taking help.  “Coordinated services” provide at least one trained staffer and offer additional services such as study skills classes, tutors, and other services.  “Structured” or “proactive” programs charge additional fees, often involve contracts, and trained staffers work with the students.

 

In general, we found the various glossy brochures mailed out by schools fairly useless—all the students were happy, the sun always shone, etc, etc, etc.  What we did rely on, however, was the disability information published on college web sites.  We found that schools that had pretty skimpy information about disability support on the web site offered fairly skimpy services when we met with their disability offices in person.  And we met with each and every disability office at schools our son was considering.  In doing so, we were able to scratch off the list fairly quickly (though painfully) some small private schools in which our son was interested.  One office felt that they could have a staff person meet with our son every other week (wholly inadequate for a student with significant organizational deficits); at another school the disability coordinator appeared to be unfamiliar with our son’s diagnosis and unaware of what it meant for him. 

 

Like every other parent/student, we purchased the different college guides that describe the various advantages and disadvantages of different schools—which schools students rated the most highly, which had the most accessible faculty, which had the best food, which had the worst dorms, best parties, you get it.  But we also purchased the K & W Guide to College for Students with Learning Disabilities, which rated different disability programs at different schools.   Given the distance and our son’s needs, we were utterly unwilling to consider a school on the East coast that our son was interested in and is now ultimately attending until we saw that it had a particularly high rating from the K & W College Guide.

 

I’m sure you’ve heard tales of those mythical students who are disciplined and can get through the application process relatively on their own.  I will tell you that our older son was just such a student.  But our youngest . . . oh well . . . Actually, the hardest part of the application process was deciding whether or not our son should disclose his disability.  (Students are not required to do so; colleges are of course not allowed to discriminate against students who do identify their special needs.)  Although our high school transition coordinator recommends always disclosing, we were on a fence.  But during one particularly interminable college recruiting program  (again, our students are always happy, the sun is always shining, etc), I reacted to the admission rep’s statements about respecting and seeking diversity.  I figured we would call them on it. I suggested, and my husband and son agreed, to disclose the disability.  If a school were going to be bothered by the disability, it wasn’t a school our son should be attending anyway.  Consequently, my son wrote about his diagnosis in his Common Application essay.

 

Last week my husband and I drove to the East coast to drop our son off at school. My older son’s university had offered a program to the parents during freshman orientation on “Letting Go.” Parents were told that they needed to trust that they have raised their children well, that they are prepared for college, and that they will thrive.  The days of “helicopter parenting” must end.  (I told my husband that I would walk out of any similar session if offered at our younger son’s school--fortunately, it wasn’t.)  My final act of loving “helicoptering” (if that can be a noun) was to unpack and organize my son’s dorm room.  This week a co-worker, who had also just dropped off her freshman son, laughed about moms who organized their freshman’s shirts by color. Guilty as charged. And yes, my husband set up the wireless for the laptop.

 

My husband and I are now home.  Our son is out East without us, and it’s up to him now to make things work. He has survived his first earthquake and his first hurricane (two events it had not occurred to me to worry about—who knew?).  He’s excited and nervous about his new adventure.  We are scared, hopeful, and proud.  And missing him, too.

 

Parents of children with special needs either love or hate Emily Perl Kingsley’s poem, “Welcome to Holland.”  Like everything else involved in raising a child with a disability, parents find themselves in Holland, even while searching for college.  As for my husband and me, we’re planning to go to Italy this spring—really.    

 

http://www.boston.com/news/education/higher/articles/2006/03/30/determination_paves_difficult_path_to_college/

 

http://online.wsj.com/article/SB122160388151245179.html

 

http://www.amazon.com/Colleges-Students-Disabilities-Attention-Princeton/dp/0375762205

 

 

 

 

 Waiting to Exhale—for Four Years

 

Anyone who has helped a teenager through the college selection process knows what an extraordinary stressful time it can be.  The competition among the students (and their parents!) is breathtaking.  My husband and I found it extremely difficult with our oldest son, who is a strong, “traditional” student.  But to navigate the college selection process with a special needs student is a whole different ball game with an entirely different bucket list of worries and “to-do’s.”

 

I know that we are blessed that we were even able to consider college for our now 18-year-old son, because only about a third of students with disabilities attend college according to the US Department of Education in 2003.  Whereas public high schools are required by law to provide individualized educations for students with special needs, colleges are required to make only “reasonable accommodations” for qualified students. What this means varies wildly from school to school, and there is a lack of terminology to describe support programs offered by colleges.  According to the Wall Street Journal, at a minimum, schools will offer “basic programs,” which offer only the accommodations required by law; eg, un-timed testing or note-taking help.  “Coordinated services” provide at least one trained staffer and offer additional services such as study skills classes, tutors, and other services.  “Structured” or “proactive” programs charge additional fees, often involve contracts, and trained staffers work with the students.

 

In general, we found the various glossy brochures mailed out by schools fairly useless—all the students were happy, the sun always shone, etc, etc, etc.  What we did rely on, however, was the disability information published on college web sites.  We found that schools that had pretty skimpy information about disability support on the web site offered fairly skimpy services when we met with their disability offices in person.  And we met with each and every disability office at schools our son was considering.  In doing so, we were able to scratch off the list fairly quickly (though painfully) some small private schools in which our son was interested.  One office felt that they could have a staff person meet with our son every other week (wholly inadequate for a student with significant organizational deficits); at another school the disability coordinator appeared to be unfamiliar with our son’s diagnosis and unaware of what it meant for him. 

 

Like every other parent/student, we purchased the different college guides that describe the various advantages and disadvantages of different schools—which schools students rated the most highly, which had the most accessible faculty, which had the best food, which had the worst dorms, best parties, you get it.  But we also purchased the K & W Guide to College for Students with Learning Disabilities, which rated different disability programs at different schools.   Given the distance and our son’s needs, we were utterly unwilling to consider a school on the East coast that our son was interested in and is now ultimately attending until we saw that it had a particularly high rating from the K & W College Guide.

 

I’m sure you’ve heard tales of those mythical students who are disciplined and can get through the application process relatively on their own.  I will tell you that our older son was just such a student.  But our youngest . . . oh well . . . Actually, the hardest part of the application process was deciding whether or not our son should disclose his disability.  (Students are not required to do so; colleges are of course not allowed to discriminate against students who do identify their special needs.)  Although our high school transition coordinator recommends always disclosing, we were on a fence.  But during one particularly interminable college recruiting program  (again, our students are always happy, the sun is always shining, etc), I reacted to the admission rep’s statements about respecting and seeking diversity.  I figured we would call them on it. I suggested, and my husband and son agreed, to disclose the disability.  If a school were going to be bothered by the disability, it wasn’t a school our son should be attending anyway.  Consequently, my son wrote about his diagnosis in his Common Application essay.

 

Last week my husband and I drove to the East coast to drop our son off at school. My older son’s university had offered a program to the parents during freshman orientation on “Letting Go.” Parents were told that they needed to trust that they have raised their children well, that they are prepared for college, and that they will thrive.  The days of “helicopter parenting” must end.  (I told my husband that I would walk out of any similar session if offered at our younger son’s school--fortunately, it wasn’t.)  My final act of loving “helicoptering” (if that can be a noun) was to unpack and organize my son’s dorm room.  This week a co-worker, who had also just dropped off her freshman son, laughed about moms who organized their freshman’s shirts by color. Guilty as charged. And yes, my husband set up the wireless for the laptop.

 

My husband and I are now home.  Our son is out East without us, and it’s up to him now to make things work. He has survived his first earthquake and his first hurricane (two events it had not occurred to me to worry about—who knew?).  He’s excited and nervous about his new adventure.  We are scared, hopeful, and proud.  And missing him, too.

 

Parents of children with special needs either love or hate Emily Perl Kingsley’s poem, “Welcome to Holland.”  Like everything else involved in raising a child with a disability, parents find themselves in Holland, even while searching for college.  As for my husband and me, we’re planning to go to Italy this spring—really.    

 

http://www.boston.com/news/education/higher/articles/2006/03/30/determination_paves_difficult_path_to_college/

 

http://online.wsj.com/article/SB122160388151245179.html

 

http://www.amazon.com/Colleges-Students-Disabilities-Attention-Princeton/dp/0375762205

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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 Waiting to Exhale—for Four Years by Marilyn Green_Rebnord

 Anyone who has helped a teenager through the college selection process knows what an extraordinary stressful time it can be.  The competition among the students (and their parents!) is breathtaking.  My husband and I found it extremely difficult with our oldest son, who is a strong, “traditional” student.  But to navigate the college selection process with a special needs student is a whole different ball game with an entirely different bucket list of worries and “to-do’s.”

 I know that we are blessed that we were even able to consider college for our now 18-year-old son, because only about a third of students with disabilities attend college according to the US Department of Education in 2003 (http://www.boston.com/news/education/higher/articles/2006/03/30/determination_paves_difficult_path_to_college/).  Whereas public high schools are required by law to provide individualized educations for students with special needs, colleges are required to make only “reasonable accommodations” for qualified students. What this means varies wildly from school to school, and there is a lack of terminology to describe support programs offered by colleges.  According to the Wall Street Journal (http://online.wsj.com/article/SB122160388151245179.html), at a minimum, schools will offer “basic programs,” which offer only the accommodations required by law; eg, un-timed testing or note-taking help.  “Coordinated services” provide at least one trained staffer and additional supports such as study skills classes, tutors, and other services.  “Structured” or “proactive” programs charge additional fees, often involve contracts, and trained staffers who work with the students.

 In general, we found the various glossy brochures mailed out by schools fairly useless—all the students were happy, the sun always shone, etc, etc, etc.  What we did rely on, however, was the disability information published on college web sites.  We found that schools that had pretty skimpy information about disability support on the web site offered fairly skimpy services when we met with their disability offices in person.  And we met with each and every disability office at schools our son was considering.  In doing so, we were able to scratch off the list fairly quickly (though painfully) some small private schools in which our son was interested.  One office felt that they could have a staff person meet with our son every other week (wholly inadequate for a student with significant organizational deficits); at another school the disability coordinator appeared to be unfamiliar with our son’s diagnosis and unaware of what it meant for him. 

 Like every other parent/student, we purchased the different college guides that describe the various advantages and disadvantages of different schools—which schools students rated the most highly, which had the most accessible faculty, which had the best food, which had the worst dorms, best parties, you get it.  But we also purchased the K & W Guide to College for Students with Learning Disabilities, which rated different disability programs at different schools (http://www.amazon.com/Colleges-Students-Disabilities-Attention-Princeton/dp/0375762205).   Given the distance and our son’s needs, we were utterly unwilling to consider a school on the East coast that our son was interested in and is now ultimately attending until we saw that it had a particularly high rating from the K & W College Guide.  

I’m sure you’ve heard tales of those mythical students who are disciplined and can get through the application process relatively on their own.  I will tell you that our older son was just such a student.  But our youngest . . . oh well . . . Actually, the hardest part of the application process was deciding whether or not our son should disclose his disability.  (Students are not required to do so; colleges are of course not allowed to discriminate against students who do identify their special needs.)  Although our high school transition coordinator recommends always disclosing, we were on a fence.  But during one particularly interminable college recruiting program (again, our students are always happy, the sun is always shining, etc), I reacted to the admission rep’s statements about respecting and seeking diversity.  I figured we would call them on it. I suggested, and my husband and son agreed, to disclose the disability.  If a school were going to be bothered by the disability, it wasn’t a school our son should be attending anyway.  Consequently, my son wrote about his diagnosis in his Common Application essay, and I’m happy to report that the schools didn’t blink. 

 Last week my husband and I drove to the East coast to drop our son off at school. My older son’s university had offered a program to the parents during freshman orientation on “Letting Go.” Parents were told that they needed to trust that they have raised their children well, that they are prepared for college, and that they will thrive.  The days of “helicopter parenting” must end.  (I told my husband that I would walk out of any similar session if offered at our younger son’s school--fortunately, it wasn’t.)  My final act of loving “helicoptering” (if that can be a noun) was to unpack and organize my son’s dorm room.  This week a co-worker, who had also just dropped off her freshman son, laughed about moms who organized their freshman’s shirts by color. Guilty as charged. And yes, my husband set up the wireless for the laptop.

 My husband and I are now home.  Our son is out East without us, and it’s up to him now to make things work. He has survived his first earthquake and his first hurricane (two events it had never occurred to me to worry about—who knew?).  He’s excited and nervous about his new adventure.  We are scared, hopeful, and proud.  And missing him, too.

 

Parents of children with special needs either love or hate Emily Perl Kingsley’s poem, “Welcome to Holland” (http://www.our-kids.org/archives/Holland.html).  Like everything else involved in raising a child with a disability, parents can find themselves in Holland, even while searching for a college.  As for my husband and me, we’re planning to go to Italy this spring—for real, this time.    

 

Marilyn Green-Rebnord

 

http://www.boston.com/news/education/higher/articles/2006/03/30/determination_paves_difficult_path_to_college/

 

http://online.wsj.com/article/SB122160388151245179.html

 

http://www.amazon.com/Colleges-Students-Disabilities-Attention-Princeton/dp/0375762205

http://www.our-kids.org/archives/Holland.html

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Waiting to Exhale—for Four Years

 

Anyone who has helped a teenager through the college selection process knows what an extraordinary stressful time it can be.  The competition among the students (and their parents!) is breathtaking.  My husband and I found it extremely difficult with our oldest son, who is a strong, “traditional” student.  But to navigate the college selection process with a special needs student is a whole different ball game with an entirely different bucket list of worries and “to-do’s.”

 

I know that we are blessed that we were even able to consider college for our now 18-year-old son, because only about a third of students with disabilities attend college according to the US Department of Education in 2003.  Whereas public high schools are required by law to provide individualized educations for students with special needs, colleges are required to make only “reasonable accommodations” for qualified students. What this means varies wildly from school to school, and there is a lack of terminology to describe support programs offered by colleges.  According to the Wall Street Journal, at a minimum, schools will offer “basic programs,” which offer only the accommodations required by law; eg, un-timed testing or note-taking help.  “Coordinated services” provide at least one trained staffer and offer additional services such as study skills classes, tutors, and other services.  “Structured” or “proactive” programs charge additional fees, often involve contracts, and trained staffers work with the students.

 

In general, we found the various glossy brochures mailed out by schools fairly useless—all the students were happy, the sun always shone, etc, etc, etc.  What we did rely on, however, was the disability information published on college web sites.  We found that schools that had pretty skimpy information about disability support on the web site offered fairly skimpy services when we met with their disability offices in person.  And we met with each and every disability office at schools our son was considering.  In doing so, we were able to scratch off the list fairly quickly (though painfully) some small private schools in which our son was interested.  One office felt that they could have a staff person meet with our son every other week (wholly inadequate for a student with significant organizational deficits); at another school the disability coordinator appeared to be unfamiliar with our son’s diagnosis and unaware of what it meant for him. 

 

Like every other parent/student, we purchased the different college guides that describe the various advantages and disadvantages of different schools—which schools students rated the most highly, which had the most accessible faculty, which had the best food, which had the worst dorms, best parties, you get it.  But we also purchased the K & W Guide to College for Students with Learning Disabilities, which rated different disability programs at different schools.   Given the distance and our son’s needs, we were utterly unwilling to consider a school on the East coast that our son was interested in and is now ultimately attending until we saw that it had a particularly high rating from the K & W College Guide.

 

I’m sure you’ve heard tales of those mythical students who are disciplined and can get through the application process relatively on their own.  I will tell you that our older son was just such a student.  But our youngest . . . oh well . . . Actually, the hardest part of the application process was deciding whether or not our son should disclose his disability.  (Students are not required to do so; colleges are of course not allowed to discriminate against students who do identify their special needs.)  Although our high school transition coordinator recommends always disclosing, we were on a fence.  But during one particularly interminable college recruiting program  (again, our students are always happy, the sun is always shining, etc), I reacted to the admission rep’s statements about respecting and seeking diversity.  I figured we would call them on it. I suggested, and my husband and son agreed, to disclose the disability.  If a school were going to be bothered by the disability, it wasn’t a school our son should be attending anyway.  Consequently, my son wrote about his diagnosis in his Common Application essay.

 

Last week my husband and I drove to the East coast to drop our son off at school. My older son’s university had offered a program to the parents during freshman orientation on “Letting Go.” Parents were told that they needed to trust that they have raised their children well, that they are prepared for college, and that they will thrive.  The days of “helicopter parenting” must end.  (I told my husband that I would walk out of any similar session if offered at our younger son’s school--fortunately, it wasn’t.)  My final act of loving “helicoptering” (if that can be a noun) was to unpack and organize my son’s dorm room.  This week a co-worker, who had also just dropped off her freshman son, laughed about moms who organized their freshman’s shirts by color. Guilty as charged. And yes, my husband set up the wireless for the laptop.

 

My husband and I are now home.  Our son is out East without us, and it’s up to him now to make things work. He has survived his first earthquake and his first hurricane (two events it had not occurred to me to worry about—who knew?).  He’s excited and nervous about his new adventure.  We are scared, hopeful, and proud.  And missing him, too.

 

Parents of children with special needs either love or hate Emily Perl Kingsley’s poem, “Welcome to Holland.”  Like everything else involved in raising a child with a disability, parents find themselves in Holland, even while searching for college.  As for my husband and me, we’re planning to go to Italy this spring—really.    

 

http://www.boston.com/news/education/higher/articles/2006/03/30/determination_paves_difficult_path_to_college/

 

http://online.wsj.com/article/SB122160388151245179.html

 

http://www.amazon.com/Colleges-Students-Disabilities-Attention-Princeton/dp/0375762205

 

 

 

 

 Waiting to Exhale—for Four Years

 

Anyone who has helped a teenager through the college selection process knows what an extraordinary stressful time it can be.  The competition among the students (and their parents!) is breathtaking.  My husband and I found it extremely difficult with our oldest son, who is a strong, “traditional” student.  But to navigate the college selection process with a special needs student is a whole different ball game with an entirely different bucket list of worries and “to-do’s.”

 

I know that we are blessed that we were even able to consider college for our now 18-year-old son, because only about a third of students with disabilities attend college according to the US Department of Education in 2003.  Whereas public high schools are required by law to provide individualized educations for students with special needs, colleges are required to make only “reasonable accommodations” for qualified students. What this means varies wildly from school to school, and there is a lack of terminology to describe support programs offered by colleges.  According to the Wall Street Journal, at a minimum, schools will offer “basic programs,” which offer only the accommodations required by law; eg, un-timed testing or note-taking help.  “Coordinated services” provide at least one trained staffer and offer additional services such as study skills classes, tutors, and other services.  “Structured” or “proactive” programs charge additional fees, often involve contracts, and trained staffers work with the students.

 

In general, we found the various glossy brochures mailed out by schools fairly useless—all the students were happy, the sun always shone, etc, etc, etc.  What we did rely on, however, was the disability information published on college web sites.  We found that schools that had pretty skimpy information about disability support on the web site offered fairly skimpy services when we met with their disability offices in person.  And we met with each and every disability office at schools our son was considering.  In doing so, we were able to scratch off the list fairly quickly (though painfully) some small private schools in which our son was interested.  One office felt that they could have a staff person meet with our son every other week (wholly inadequate for a student with significant organizational deficits); at another school the disability coordinator appeared to be unfamiliar with our son’s diagnosis and unaware of what it meant for him. 

 

Like every other parent/student, we purchased the different college guides that describe the various advantages and disadvantages of different schools—which schools students rated the most highly, which had the most accessible faculty, which had the best food, which had the worst dorms, best parties, you get it.  But we also purchased the K & W Guide to College for Students with Learning Disabilities, which rated different disability programs at different schools.   Given the distance and our son’s needs, we were utterly unwilling to consider a school on the East coast that our son was interested in and is now ultimately attending until we saw that it had a particularly high rating from the K & W College Guide.

 

I’m sure you’ve heard tales of those mythical students who are disciplined and can get through the application process relatively on their own.  I will tell you that our older son was just such a student.  But our youngest . . . oh well . . . Actually, the hardest part of the application process was deciding whether or not our son should disclose his disability.  (Students are not required to do so; colleges are of course not allowed to discriminate against students who do identify their special needs.)  Although our high school transition coordinator recommends always disclosing, we were on a fence.  But during one particularly interminable college recruiting program  (again, our students are always happy, the sun is always shining, etc), I reacted to the admission rep’s statements about respecting and seeking diversity.  I figured we would call them on it. I suggested, and my husband and son agreed, to disclose the disability.  If a school were going to be bothered by the disability, it wasn’t a school our son should be attending anyway.  Consequently, my son wrote about his diagnosis in his Common Application essay.

 

Last week my husband and I drove to the East coast to drop our son off at school. My older son’s university had offered a program to the parents during freshman orientation on “Letting Go.” Parents were told that they needed to trust that they have raised their children well, that they are prepared for college, and that they will thrive.  The days of “helicopter parenting” must end.  (I told my husband that I would walk out of any similar session if offered at our younger son’s school--fortunately, it wasn’t.)  My final act of loving “helicoptering” (if that can be a noun) was to unpack and organize my son’s dorm room.  This week a co-worker, who had also just dropped off her freshman son, laughed about moms who organized their freshman’s shirts by color. Guilty as charged. And yes, my husband set up the wireless for the laptop.

 

My husband and I are now home.  Our son is out East without us, and it’s up to him now to make things work. He has survived his first earthquake and his first hurricane (two events it had not occurred to me to worry about—who knew?).  He’s excited and nervous about his new adventure.  We are scared, hopeful, and proud.  And missing him, too.

 

Parents of children with special needs either love or hate Emily Perl Kingsley’s poem, “Welcome to Holland.”  Like everything else involved in raising a child with a disability, parents find themselves in Holland, even while searching for college.  As for my husband and me, we’re planning to go to Italy this spring—really.    

 

http://www.boston.com/news/education/higher/articles/2006/03/30/determination_paves_difficult_path_to_college/

 

http://online.wsj.com/article/SB122160388151245179.html

 

http://www.amazon.com/Colleges-Students-Disabilities-Attention-Princeton/dp/0375762205

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Court Appointed Special Advocate ("CASA") Helping Families Navigate the Special Ed System by Marilyn Green-Rebnord

The following is a blog from Marilyn Green-Rebnord, who has been a court appointed special advocate or CASA. In this role she has provided invaluable help to families trying to navigate the special education system. She was also one of the founders and moving forces behind Special Kids, Special Families that for more than a decade provided excellent advice, support and presentations on various topics to help families. While Special Kids has now disbanded she continues to help families as a CASA and working part-time in my office.

SLANT Successfully Used to Teach Students with Downs To Read by Pam Labellarte

I have recently run into a series of IEP teams that all seem to have been making the same claim that students with intellectual challenges can not learn to read beyond the most rudimentary level. When faced with lack of progress even on IEP goals, I am told that students "like that" just do not progress. It is enough to make my head explode when faced with the bias of low expectations. Schools feel that they have a literacy loophole that negates any need to show progress on a basic area of academic developement--literacy.

Pam Labellarte, an experienced special advocate and a parent of a child with Downs Syndrome who works for me, authored the following first person account of her struggle with school to recognize that her daughter can read if taught appropriately, and her wonderful success in recent years with the SLANT method.  At the end of the first person account is her tutor's Masters thesis on her work with SLANT with students with Downs and her data.  It is good stuff and should help in the future when faced with the same argument that students like that can not learn to read.

Adults with Developmental Disabilities Facing Dire Circumstances

Over this past year I have increasing represented families whose children need residential placements.  While I have no illusions that simply placing a child in residential is the answer to all prayers, it is almost always a the final culmination of years of trying less restrictive placements. Despite what too many school personnel think, residential placements are not an effort to rid the family of a troubling child, but rather to save the child so he or she can have a life and a real connection with the family.  

One family I represented the student was openly homicidal, but according to the school that was only at home so there was no educationally-relevant need.  Unfortunately the majority of cases (and I have researched this topic thoroughly) do not consider home-based issues of primary relevance in making a residential placement decision. I think of this case often and hope not to see his name in the paper in connection with a homicide at school or at home.  Remarkably the private day school where was placed described him as sterling citizen in the school.  This description and the overall stance seemed to be about keeping him in the private day school and the funding that went along with his placement.  I lost all respect for that staff that day!

The even more troubling situation is when students age out of residential placements. Most residential schools do not serve students over the age of 18. Moreover, as described in the video clip below, states are increasingly cutting back on funding any residential placement even though this placement is mandated under IDEIA. To paraphrase my long standing reader of this blog, Daunna Minnich, schools view students one way when they are young children but take and entirely different view when they are 18 and above. She squarely is confronting the hard and incredibly frightening reality of raising an adult with severe developmental disabilities with little or no resources. Planning is a nightmare in the best of economic times; these are obviously not even those times.  Creative juggling of time and money only goes so far, when basic issues of safety and supervision are the essential issues. Daunna eloquently and painfully puts a spot light on the reality of adults with developmental disability. I am deeply grateful to Daunna and PBS [click here for the video] for  laying out the stark reality. Now politicians need to act and reorder our collective priorities so people are in fact put first.

 

Matt's Big Transition Success Story

A number of year ago I represented Matt as he fought for reimbursement and payment for PACE, a high quality transition program, run by the teaching university at National Louis in Skokie.  While we won a partial victory at hearing, Matt's and his family's dedication and his winning personality has allowed him to accomplish great things, as the video clip below shows. He is managing a local deli, has lots of friends, is an integral part of the community. He is even in a position to hire other students with special needs and has done so. What a  wonderful world when  all the pieces come together, in spite of the school system that had a very unformed and limited concept of transition programming. Hurrah for Matt, his family and all the dedicated staff at PACE that made this great outcome a reality! Here is a link for the video.

Autism Recovery? by Nicole Jorwic

"Recovery" from autism is an all-encompassing term. I have a 20-year old brother with autism. When Christopher was first diagnosed he had changed from a happy, engaged 2-year-old who had retreated to "his own world," without  eye contact, lashing out in frustration and losing all the words in his growing vocabulary. My family went through every treatment available, from floor-time and sessions with Stanley Greenspan in Bethesda, Maryland, Cranial-sacral therapy, sensory-integration therapy, Tomatis auditory training, Gluten-free diets and an in-home ABA therapy 40 hours a week. And while Chris is still non-verbal he is now very much a part of “this world.” Yes, there are still bouts of frustration and trouble with communication but the essence of Chris that is the "gentle giant" that we all know and love was slowly recovered through my parents’, Chris’ and his many therapists’ and doctors’ tireless efforts.

Children with Special Needs Should Not Be Used As Political Emblems

With 19 days before the election, having just watched the final Presidential debate, it is time for me to publicly weigh in on the issues that are most vital to me. Not surprisingly, among the primary issues for me are  education and special education. Senator McCain's position in favor of vouchers will in no way strengthen public schools, any more than draining blood from a person fortifies their health. Although public schools have much to improve upon, and I will and have fought on a case by case basis for out of district placements; to systemically weaken public education would not make for a better education system and in the process would not help nor improve the lot of students with special needs. It is an ideological position that will permanently and irrevocably leave students with special needs behind.

I have been simmering on a daily basis every time Governor Palin holds up her son Trig as a political symbol. I have to say, that I think all small children should be left out of the political forum, and it is wrong to use an infant with special needs as an emblem of your own personal rectitude.  As to her comments that she will be an advocate for children with special needs, this statement rings hollow with me personally. She may be sincere in these statements, but I do not think she realizes how little she knows about what it means to raise a child with special needs, or the daily struggles against deeply ingrained stereotypes about children with Downs and special needs generally.

She has not even begun to know the daily pain of fighting small battles when well-meaning people touch your young child's head and body invading any sense of personal space and privacy. Or the people who say "is he tired" for the umpteenth time when he is slumped on your shoulder; the reality is that his head control has disappeared that day, and you would prefer to just have a private outing with your family without well meaning intrusions. Obviously, the big arena that she has not experienced at all is the fights over so many things in school. In this life it is important to know what you know, and it is even more important to know what you do not know. She does not have any sense as to how much she does not know. She is not a knowledgeable member of this involuntary club called "Special Needs Parenthood" and I am disturbed that she thinks she is.

Finally tonight when Senator McCain brought up research for autism as a political brownie point, I had to speak out.  He has obviously read the statistics from the CDC that 1 in 150 children have autism, which represents a lot of moms, dads, grandparents, aunts and uncles and friends and others that care about children with autism. It is wrong at this late date to shill yourself as a champion for the vulnerable populations of children with autism, when he has no record to speak of before now. Senator Obama and for that matter Senator Clinton have taken affirmative positions on funding and supporting efforts for children with autism.

Children with special needs whether those with Downs or Autism or CP or any other disability are not emblems to be held up for political gain. It is offensive and wrong! If Senator McCain's voting record with President Bush was not enough to disqualify him for the Presidency, then his use of children with special needs as a political tool certainly rules him out once and for all. I think Senator Obama is thoughtful and steady and qualified,  but he has also shown that he is respectful of the people and issues that matter most to me. He has my vote and for what it is worth my hearty endorsement.

[Here is another blog taking a similar perspective on the debate.]

A Teenager with Disabilities Statement of Love and Courgage

The following is a statement from a client of mine who has disabilities. He is a teenager. He was adopted a number of years ago. Over the last year and a half he has been the frequent victim of bullying based on race and disability from peers. Unfortunately, school personnel have not been responsive to him and have not been protective of him. Despite all that he has been through, he is an amazingly resilient person who has an enormous capacity for love for his parents and courage in the face of adversity. It is students like him that make my job so very satisfying.