I came across this interview with Pegi Young put together by kids from The Bridge School which is known for teaching specialized communication for children who are experiencing global or developmental delays in speech. Here's another interview with their famous supporter, Rock-n-roll legend Neil Young. Looky here!
The interview is a reminder that however we as a society either perceive or define as "loss" or "disability" will be our kid's only handicap in life. It is also a reminder that survival is a gift. A blessing. And that as parents we have a direct responsibility to teach our children all the survival skills they need for their future regardless how they come into this world.
Since no one can prepare us for this journey, it is even more important for parents to educate themselves about different teaching aides, methodologies, and technologies that will help children access their right to a special education according to their ability.
How parents go about accessing these resources will vary depending on each child's ability or special diagnosis. Generally, it's best to find the advocacy organization in town once a medical diagnosis is identified by a medical professional. Just google in the name of the "diagnosis" and "Cincinnati" and "advocacy" and start there.
Every community should have a Bridge School. But we don't. I think the closest thing we have in Cincinnati is the Perlman Center. The therapists at Perlman provide evaluations that will determine the best technologies for child's ability.
If your child is not following a typical pattern of cognition development, MR/dd schools are geared for non-curriculum track. Also try the Springer School which is a private school on the eastside of Cincinnati focusing on learning disabilities.
We must also pay attention to what our politicians are doing. Schools that are having difficulty passing tax levies in communities already paying high property taxes are schools that are in need of strong advocacy. So it is very important that we sound the bell educating our representatives at the local, state, and federal levels of government to make sure our children are not lost in the financially drained mainstream schools. We need to hold these politicians accountable. We need to hold the schools accountable.
Make sure you know who these people are.
Monday, November 10, 2008
Wednesday, August 20, 2008
Respite Care in Cincinnati, Ohio
My personal experience as been with the Redwood Rehabilitation Center on Orphanage Road off Dixie Highway in Ft. Mitchell, Kentucky. It is a stellar organization and should be used as a model for the excellent care facilities.
the Arc of Hamilton County has several programs to help with cover costs for respite services:
Family Resource Services Program can help families pay for respite services. A sliding fee scale is used to determine the percentage a family will pay for services. The program provides funds for families who are eligible to receive MRDD services.
Parents' Night Out can provide funds to hire a sitter for a child with a disability.
The Children's Home of Cincinnati offers a Child Care Program for day care and kindergarten readiness for children ages 3 months through 5 years of age. Children with special needs are accepted, but they must be able to function in their day care and preschool program settings.
Evening Star is a program of Fellowship Baptist Church in Mainville, Ohio, that provides respite services once a month for families that have a child with a disability and their siblings. Families do not have to be church members to participate.
Max's Home a day care center for medically fragile children, is a division of Maxim Healthcare Services. It provides medical treatment, adaptive education and respite for families who have children with special health care needs. Infants and children ages 6 weeks through teenagers are eligible for treatment.
MR/dd
has respite services available for eligible families. Contact your Service Facilitator to begin the process.
Nat. Child Care Information Centerdeveloped by the U.S. Department of Health and Human Services provides information and resources on child care and early childhoold education.
Ohio Department of Job and Family Services provides a daycare facility locator.
St. Joseph Home of Cincinnati
offers a respite program with 24-hour personal and medical services for medically fragile and developmentally disabled infants and young adults.
the Arc of Hamilton County has several programs to help with cover costs for respite services:
Family Resource Services Program can help families pay for respite services. A sliding fee scale is used to determine the percentage a family will pay for services. The program provides funds for families who are eligible to receive MRDD services.
Parents' Night Out can provide funds to hire a sitter for a child with a disability.
The Children's Home of Cincinnati offers a Child Care Program for day care and kindergarten readiness for children ages 3 months through 5 years of age. Children with special needs are accepted, but they must be able to function in their day care and preschool program settings.
Evening Star is a program of Fellowship Baptist Church in Mainville, Ohio, that provides respite services once a month for families that have a child with a disability and their siblings. Families do not have to be church members to participate.
Max's Home a day care center for medically fragile children, is a division of Maxim Healthcare Services. It provides medical treatment, adaptive education and respite for families who have children with special health care needs. Infants and children ages 6 weeks through teenagers are eligible for treatment.
MR/dd
has respite services available for eligible families. Contact your Service Facilitator to begin the process.
Nat. Child Care Information Centerdeveloped by the U.S. Department of Health and Human Services provides information and resources on child care and early childhoold education.
Ohio Department of Job and Family Services provides a daycare facility locator.
St. Joseph Home of Cincinnati
offers a respite program with 24-hour personal and medical services for medically fragile and developmentally disabled infants and young adults.
Tuesday, August 19, 2008
Wright's Law and IEP
Wright's Law Web site has a great ARTICLE about writing IEPs or "individualized education plan."
From our own experience, it involves first identifying the child's strengths & abilities. What is this child capable of doing? This might involve having your child accessed by a team of early childhood experts before meeting with the school's psychologist.
To connect with the early childhood experts you need to contact an intervention team through a specialized organization or advocacy group. (DSA, NCPA, CAB, etc.) Most children's hospitals locally will have a list of local organizations and agencies that provide early intervention and education for new parents. It is CRITICAL that parents begin this journey early before the child is 3 years old.
Initially, our daugher's psychological accessment put her at a very, very young age so we wrote her IEP based on measurable goals and objectives according to her abilities based on where she is "developmentally." Her education plan isn't focused on academics. Not yet, anyway. Her education plan is focused on what SHE can do, not what her peers are doing.
We would have her in a classroom with her peers if that would be appropriate for her but it's not. She isn't anywhere near their "cognition" so she attends a therapeutic-based school where the focus isn't driven by academic standards or achievement.
That's our choice and fortunately we still have this alternative thanks to "continuum of alternative placement."
From our own experience, it involves first identifying the child's strengths & abilities. What is this child capable of doing? This might involve having your child accessed by a team of early childhood experts before meeting with the school's psychologist.
To connect with the early childhood experts you need to contact an intervention team through a specialized organization or advocacy group. (DSA, NCPA, CAB, etc.) Most children's hospitals locally will have a list of local organizations and agencies that provide early intervention and education for new parents. It is CRITICAL that parents begin this journey early before the child is 3 years old.
Initially, our daugher's psychological accessment put her at a very, very young age so we wrote her IEP based on measurable goals and objectives according to her abilities based on where she is "developmentally." Her education plan isn't focused on academics. Not yet, anyway. Her education plan is focused on what SHE can do, not what her peers are doing.
We would have her in a classroom with her peers if that would be appropriate for her but it's not. She isn't anywhere near their "cognition" so she attends a therapeutic-based school where the focus isn't driven by academic standards or achievement.
That's our choice and fortunately we still have this alternative thanks to "continuum of alternative placement."
Monday, August 18, 2008
Advocacy 101 with Patricia Bauer
I can't remember if I have Patricia Bauer's web-blog indexed. She keeps a great collection of newsworthy articles on her webblog for easy references and her site is especially helpful if you are a new parent to a child who has disability labels.
From her website:
From her website:
Patricia E. Bauer is a journalist who has served as senior editor of the Los Angeles Times Sunday Magazine; special assistant to the publisher of the Washington Post; reporter and bureau chief at the Washington Post, and pundit on public affairs television in Los Angeles. Her articles have appeared in the Washington Post, the New York Times and many other publications.
Bauer is a former member of an Institutional Review Board (IRB) at UCLA, where she participated in the ethical review of federally funded medical research on human subjects, and has addressed national and regional conferences on the rights of patients and people with disabilities. During the Carter years, she worked in the White House press office as editor of the White House News Summary.
She is a member of the President’s Leadership Council at Dartmouth College, the Pacific Council on International Policy, and the board of trustees of the Riverview School in East Sandwich, Massachusetts.
Bauer and her husband are among the founders of the Pathway Program at UCLA, a post-secondary program for young adults with intellectual disabilities. They are the parents of two young adults, one of whom has Down syndrome and is a survivor of leukemia
Tuesday, August 12, 2008
Stiller's Tropic Thunder Blunder
Listen to NPR Interview here with Elisabeth's friend Lennard J. Davis, a professor of disability studies at the University of Illinois, who isn't amused by the use of the word "retard."
YOU GO LENNARD!!!
YOU GO LENNARD!!!
STILLER'S Tropic Thunder Blunder
The review from our film critic Moria MacDonald in Seattle who says "no delivery"
HERE
Take Elisabeth's advice:
1)Stay home.
2)Watch your kids instead.
3)Count your blessings.
HERE
Take Elisabeth's advice:
1)Stay home.
2)Watch your kids instead.
3)Count your blessings.
Monday, August 11, 2008
Please Say Something, Don't Just Stare ...
It happens everywhere we go with Elisabeth. People stare. They stare and stare and stare and stare. I've become very self conscious about it.
Most of the time, I'm pretty creative or bring it to Elisabeth's attention that she has an audience and to be on her best behavior. If she's slurping or sliming, I usually tell her that's not going to go over big with her new friends.
Most people don't know the changes of cloths we go through or the amount of care we put into making our children presentable so they fit in with the rest. I can have Elisabeth ready for a shopping trip and by the time we leave, she's ready for a shirt change, a hair comb, lotion on her hands to work out the rubbery raisin skin, or whatever it takes to make her "presentable. Her sister's are very focused on "the look" that will get Elisabeth the desired attention and "the look" that will disgust people and stop them from coming up to her.
Today while in Target, two girls about about Elisabeth's age just stared. One even looked at her and said, "that's so gross" referring to Elisabeth's preoccupation with her tongue and chew aids. It hurt. It hurt Elisabeth.
At the Limited Too, recently, a group of girls probably younger than Elisabeth reacted the same way using the "R" word and laughed. Fortunately, her younger sister was trying on clothes while this was happening.
I guess I'm writing this because I want people to know it's okay to come up to us and say hello or even help me distract Elisabeth from being so fixated on her hand, fingers, cloths or hair. If you're with your children, remember children learn from example. They'll do or say what you, the adult, will do or say.
In this situation, it's okay to say "hello." If your kids ask "what wrong with her" tell them you don't know.
Should it matter?
You would be surprised how easy it is to get a smile from our kids. When people say "hello" she usually stops she's doing long enough to wave or smile.
Most of the time, I'm pretty creative or bring it to Elisabeth's attention that she has an audience and to be on her best behavior. If she's slurping or sliming, I usually tell her that's not going to go over big with her new friends.
Most people don't know the changes of cloths we go through or the amount of care we put into making our children presentable so they fit in with the rest. I can have Elisabeth ready for a shopping trip and by the time we leave, she's ready for a shirt change, a hair comb, lotion on her hands to work out the rubbery raisin skin, or whatever it takes to make her "presentable. Her sister's are very focused on "the look" that will get Elisabeth the desired attention and "the look" that will disgust people and stop them from coming up to her.
Today while in Target, two girls about about Elisabeth's age just stared. One even looked at her and said, "that's so gross" referring to Elisabeth's preoccupation with her tongue and chew aids. It hurt. It hurt Elisabeth.
At the Limited Too, recently, a group of girls probably younger than Elisabeth reacted the same way using the "R" word and laughed. Fortunately, her younger sister was trying on clothes while this was happening.
I guess I'm writing this because I want people to know it's okay to come up to us and say hello or even help me distract Elisabeth from being so fixated on her hand, fingers, cloths or hair. If you're with your children, remember children learn from example. They'll do or say what you, the adult, will do or say.
In this situation, it's okay to say "hello." If your kids ask "what wrong with her" tell them you don't know.
Should it matter?
You would be surprised how easy it is to get a smile from our kids. When people say "hello" she usually stops she's doing long enough to wave or smile.
PLEASE BOYCOTT TROPIC THUNDER
AAPD Condemns Portrayal of Disabled Character, Use of the Word 'Retard' in 'Tropic Thunder'
Last update: 6:29 p.m. EDT Aug. 11, 2008
WASHINGTON, Aug 11, 2008 /PRNewswire-USNewswire via COMTEX/ --
Depiction of character and repeated use of word "horrifying" The largest cross-disability membership organization in the U.S. on Monday condemned all of the entities involved in creating, producing and marketing the movie "Tropic Thunder" for the use of the word "retard" and their portrayal of an intellectually disabled character in the movie.
The American Association of People with Disabilities (AAPD) helped organize a coalition of disability groups that have come together to boycott the film. Members of the coalition, including AAPD's President and CEO, Andrew Imparato, met with DreamWorks executives last week to discuss concerns about the film.
The movie is a movie-industry spoof depicting a caricature of an intellectually disabled person -- a character called "Simple Jack," played by actor Ben Stiller's character -- which is a continuation of the horrifying portrayal of disabled characters in entertainment.
AAPD is also disgusted at the use of the word "retard" numerous times in the movie and promotional items for the film, including the promotional slogan, "Once upon a time there was a retard," in the now-defunct Web site for the movie-within-a-movie, "Simple Jack."
"Both the use of this word and the appalling portrayal of an intellectually disabled character in this movie are incredibly damaging to people with intellectual disabilities," Imparato said after viewing the film Monday. "This movie perpetuates use of a hateful word the disability community is trying to eradicate from our country's vocabulary. Although the movie is considered satire, this depiction of a person with intellectual disabilities is far from funny."
"One of the biggest challenges for people with intellectual disabilities is when society encourages this portrayal of them," said Cheryl Senenbrenner, Chair of the American Association of People with Disabilities board, whose 38-year-old sister, Tara Warren, has Down Syndrome. "It's almost the worst adversity they face. People like Tara can do phenomenal things. She's very highly accomplished."
"As a person with a disability, the movie didn't make me feel good," said AAPD board member and President of Self-Advocates of Indiana, Inc. Betty Williams after viewing the film Monday. "I felt really horrible hearing them say the 'r' word so many times, so easily."
AAPD is also disappointed that the filmmakers included in the movie reportedly discussed the potentially offensive content of the movie with other groups before moving forward with production, but did not hold similar consultations with the disability community.
AAPD issued a joint statement as part of the coalition, which includes the Special Olympics, Arc of the United States and the National Council on Independent Living, criticizing the film and calling on Hollywood to remedy the harm that is being done by the film.
The American Association of People with Disabilities (AAPD), the country's largest cross-disability membership organization, organizes the disability community to be a powerful voice for change - economically, politically, and socially. AAPD was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and to be a national voice for change in implementing the goals of the Americans with Disabilities Act (ADA). To learn more, visit the AAPD website: http://www.aapd.com.
SOURCE American Association of People With Disabilities http://www.aapd.com
Last update: 6:29 p.m. EDT Aug. 11, 2008
WASHINGTON, Aug 11, 2008 /PRNewswire-USNewswire via COMTEX/ --
Depiction of character and repeated use of word "horrifying" The largest cross-disability membership organization in the U.S. on Monday condemned all of the entities involved in creating, producing and marketing the movie "Tropic Thunder" for the use of the word "retard" and their portrayal of an intellectually disabled character in the movie.
The American Association of People with Disabilities (AAPD) helped organize a coalition of disability groups that have come together to boycott the film. Members of the coalition, including AAPD's President and CEO, Andrew Imparato, met with DreamWorks executives last week to discuss concerns about the film.
The movie is a movie-industry spoof depicting a caricature of an intellectually disabled person -- a character called "Simple Jack," played by actor Ben Stiller's character -- which is a continuation of the horrifying portrayal of disabled characters in entertainment.
AAPD is also disgusted at the use of the word "retard" numerous times in the movie and promotional items for the film, including the promotional slogan, "Once upon a time there was a retard," in the now-defunct Web site for the movie-within-a-movie, "Simple Jack."
"Both the use of this word and the appalling portrayal of an intellectually disabled character in this movie are incredibly damaging to people with intellectual disabilities," Imparato said after viewing the film Monday. "This movie perpetuates use of a hateful word the disability community is trying to eradicate from our country's vocabulary. Although the movie is considered satire, this depiction of a person with intellectual disabilities is far from funny."
"One of the biggest challenges for people with intellectual disabilities is when society encourages this portrayal of them," said Cheryl Senenbrenner, Chair of the American Association of People with Disabilities board, whose 38-year-old sister, Tara Warren, has Down Syndrome. "It's almost the worst adversity they face. People like Tara can do phenomenal things. She's very highly accomplished."
"As a person with a disability, the movie didn't make me feel good," said AAPD board member and President of Self-Advocates of Indiana, Inc. Betty Williams after viewing the film Monday. "I felt really horrible hearing them say the 'r' word so many times, so easily."
AAPD is also disappointed that the filmmakers included in the movie reportedly discussed the potentially offensive content of the movie with other groups before moving forward with production, but did not hold similar consultations with the disability community.
AAPD issued a joint statement as part of the coalition, which includes the Special Olympics, Arc of the United States and the National Council on Independent Living, criticizing the film and calling on Hollywood to remedy the harm that is being done by the film.
The American Association of People with Disabilities (AAPD), the country's largest cross-disability membership organization, organizes the disability community to be a powerful voice for change - economically, politically, and socially. AAPD was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and to be a national voice for change in implementing the goals of the Americans with Disabilities Act (ADA). To learn more, visit the AAPD website: http://www.aapd.com.
SOURCE American Association of People With Disabilities http://www.aapd.com
Saturday, August 9, 2008
Message from Dark Knight 13
I copied this message from my friend Dark Knight who posted this question to parents like me on Patricia Bauer's site here
First, I don't know where to start but how about with the quote from Jonathan Swift who also said "satire is a sort of glass, wherein beholders do generally discover everybody's face but their own."
Jonathan Swift relied on creative genius to write his satires about political injustices and minority causes. Ben Stiller on the other hand, has relied on cheap shots using farce to exploit the "industry standard" depicting our family and friends.
In all honesty, Dark Knight 13 my friend, I don't have issues with Rosie, Dustin, Sean, Cuba or anyone who wants to take on the challenge of portraying my family and friends. More power to them. If you or anyone else thinks these actors look ridiculous doing it, well maybe you don't feel comfortable with "disability" or how it looks.
Yes, sometimes "it" looks strange. It looks "weird" to some people, too. Often times, it makes people uncomfortable. Regardless, my family and friends are not their disability. They are people first so if their humanity can be conveyed through acting somehow, more power to the acting guild.
On the other hand, if you think Rosie, Dustin, Sean, Cuba or anybody else were trying to pity, politicize, parody, or patronize our family and friends, please use a platform different then a farce-comedy directed at the illiterati, ignorami, and idioti with a movie tag line "never go full retard."
How can you all so egregiously miss the satiric point of Simple Jack? It is not making fun of those with mental retardation; instead, it is satirizing the callous actors and actresses in Hollyweird that exploit those individuals and use such roles to bolster their Oscar chances and make themselves seem socially conscious. The use of words like “retard” simply emphasize the actors’ complete lack of empathy for the subject of their portrayal. If I had a child with this disability, I’d find Sean Penn’s and Rosie o’ Donnell’s “serious” movies much more offensive than Simple Jack.
Don’t boycott Tropic Thunder…instead use that Simple Jack subplot as an example to Hollywood of what you will no longer tolerate from movies about the developmentally disabled. After all, to paraphrase Jonathan Swift, the point of satire is to point out flaws in the hopes of redeeming them.
First, I don't know where to start but how about with the quote from Jonathan Swift who also said "satire is a sort of glass, wherein beholders do generally discover everybody's face but their own."
Jonathan Swift relied on creative genius to write his satires about political injustices and minority causes. Ben Stiller on the other hand, has relied on cheap shots using farce to exploit the "industry standard" depicting our family and friends.
In all honesty, Dark Knight 13 my friend, I don't have issues with Rosie, Dustin, Sean, Cuba or anyone who wants to take on the challenge of portraying my family and friends. More power to them. If you or anyone else thinks these actors look ridiculous doing it, well maybe you don't feel comfortable with "disability" or how it looks.
Yes, sometimes "it" looks strange. It looks "weird" to some people, too. Often times, it makes people uncomfortable. Regardless, my family and friends are not their disability. They are people first so if their humanity can be conveyed through acting somehow, more power to the acting guild.
On the other hand, if you think Rosie, Dustin, Sean, Cuba or anybody else were trying to pity, politicize, parody, or patronize our family and friends, please use a platform different then a farce-comedy directed at the illiterati, ignorami, and idioti with a movie tag line "never go full retard."
Wednesday, August 6, 2008
Tropic Thunder: Focusing on the Problem, Not the Solution
This movie has caused quite a stir even before it's release date.
It's a parody about the film industry and at the center is a character whose acting career is on the skids. For laughs, the movie relies on an old technique of using words and stereotypes that makes everyone laugh at the expense of people who are labeled with mental retardation disabilities. For that, one can only hope that they go easy the careers of Stiller and Black because they have stooped to an all time low on this one.
In the movie itself, there is a comedy-parody movie about the industry standard of portraying people with mental retardation disability labels. Unfortunately, Mr. Stiller does not understand that once he enters into the political arena of creating characterizations of our children that reflect negatively on their humanity he becomes part of the culture creating the barriers our children have to face each day. Furthermore, if he had an issue with Hollywood's "industry standard" then he should have used a more proactive approach rather than perpetuating the characterization with ongoing gags about "going full retard."
I heard that DreamWorks just pulled the plug on one of the website releasing this statement:
A consortium of groups including the Special Olympics and the Down Syndrome Assn. of Los Angeles first contacted the studio Friday and set up a meeting with DreamWorks CEO Stacey Snider and other senior executives to discuss their concerns about the film. That meeting is scheduled to take place this afternoon .
DreamWorks decided to pull the plug on the site Monday night as a preemptive move.
So...
... in DreamWorks reality bubble, the right context for this kind of characterization is their movie, "Tropic Thunder," a movie that claims the running gags about "retards" was not intended to be funny because "going full retard" isn't really meant to be funny. We should only be laughing if we see the satirical portrayal of "industry standard" and the actor on the big screen who is pretending to act like "retard."
So, "in context" means it is acceptable for DreamWorks to portray people with mental retardation labels as long as it's making fun of the perpetrators who help perpetuate inaccurate characterizations of our children?
Isn't that focusing on the problem, not the solution?
Either way, I still don't get how any of this is funny much less material for "the hottest movie this summer."
The ends do not justify the means.
Anytime.
Anywhere.
Anyone.
It's a parody about the film industry and at the center is a character whose acting career is on the skids. For laughs, the movie relies on an old technique of using words and stereotypes that makes everyone laugh at the expense of people who are labeled with mental retardation disabilities. For that, one can only hope that they go easy the careers of Stiller and Black because they have stooped to an all time low on this one.
In the movie itself, there is a comedy-parody movie about the industry standard of portraying people with mental retardation disability labels. Unfortunately, Mr. Stiller does not understand that once he enters into the political arena of creating characterizations of our children that reflect negatively on their humanity he becomes part of the culture creating the barriers our children have to face each day. Furthermore, if he had an issue with Hollywood's "industry standard" then he should have used a more proactive approach rather than perpetuating the characterization with ongoing gags about "going full retard."
I heard that DreamWorks just pulled the plug on one of the website releasing this statement:
A consortium of groups including the Special Olympics and the Down Syndrome Assn. of Los Angeles first contacted the studio Friday and set up a meeting with DreamWorks CEO Stacey Snider and other senior executives to discuss their concerns about the film. That meeting is scheduled to take place this afternoon .
DreamWorks decided to pull the plug on the site Monday night as a preemptive move.
"We heard their concerns, and we understand that taken out of context, the site appeared to be insensitive to people with disabilities," DreamWorks spokesman Chip Sullivan said."
So...
... in DreamWorks reality bubble, the right context for this kind of characterization is their movie, "Tropic Thunder," a movie that claims the running gags about "retards" was not intended to be funny because "going full retard" isn't really meant to be funny. We should only be laughing if we see the satirical portrayal of "industry standard" and the actor on the big screen who is pretending to act like "retard."
So, "in context" means it is acceptable for DreamWorks to portray people with mental retardation labels as long as it's making fun of the perpetrators who help perpetuate inaccurate characterizations of our children?
Isn't that focusing on the problem, not the solution?
Either way, I still don't get how any of this is funny much less material for "the hottest movie this summer."
The ends do not justify the means.
Anytime.
Anywhere.
Anyone.
Monday, August 4, 2008
Breakfast at Tiffany's
Elisabeth really enjoyed Chicago last week.
We spent a good deal of time hiking down Michigan visiting the museums, Navy Pier, and stores. Oh the many, many stores. One store Elisabeth visited was Tiffany & Company because her grandmother wanted to price one of the charm bracelets there. I told my mother, "You know what they say about Tiffany's, don't you? If you can't see the price, you probably can't afford to buy it."
Elisabeth disagreed, so in we went right about breakfast time. All six of us. Elisabeth's mother, sister, grandmother, auntie, and cousin looking more like we were hiking through Glacier Park and observing rock formations instead of the "Million Dollar Mile."
As it turned out, the girls were fascinated with the jewelry and one can always dream, right? But halfway through the visit, Elisabeth was becoming very irritated so I headed to the restrooms three levels up to check it out.
As it turned out, Elisabeth needed the facilities and fortunately Tiffany's restrooms were more than accommodating for her needs. To be safe and spare a Tiffany shopper from embarrassment, I asked Elisabeth's eleven year old sister to stand guard at the door to prevent anyone from walking in on us.
It was taking a little longer than I expected but I overheard on the other side of the door, a woman's voice inquiring why it was necessary to guard the door. Elisabeth's younger sister responded by saying "my mom is in there with my sister and they need a little privacy. She should only be a moment." After a few moments, I overheard the woman whose patience was wearing thin I imagined asking my daughter, "How old is your sister?"
"Fourteen."
Silence.
"Oh."
I suppose this stumped the woman but she either continued to wait instead of barging in like so many people do after their curiosities get the best of them or she simply moved on because I didn't hear anything else afterward.
After Elisabeth was ready, I opened the door and found standing next to my daughter an employee wearing business attire and sporting a store manager's badge. She smiled at Elisabeth and me, helped me with the door, and went her separate way.
I couldn't imagine in a million years what was going on in that woman's mind while she was standing there and waiting to use the bathroom. A bathroom that was being guarded by an an eleven year old who offered nothing more than a simple request for her to wait because a 14 year old sister needed privacy. In Tiffany and Co.'s restroom of all places.
And this woman waited patiently giving Elisabeth the dignity and privacy she deserved not because she was a shopper at Tiffany's, not because she was disabled, but because she is a human being.
We spent a good deal of time hiking down Michigan visiting the museums, Navy Pier, and stores. Oh the many, many stores. One store Elisabeth visited was Tiffany & Company because her grandmother wanted to price one of the charm bracelets there. I told my mother, "You know what they say about Tiffany's, don't you? If you can't see the price, you probably can't afford to buy it."
Elisabeth disagreed, so in we went right about breakfast time. All six of us. Elisabeth's mother, sister, grandmother, auntie, and cousin looking more like we were hiking through Glacier Park and observing rock formations instead of the "Million Dollar Mile."
As it turned out, the girls were fascinated with the jewelry and one can always dream, right? But halfway through the visit, Elisabeth was becoming very irritated so I headed to the restrooms three levels up to check it out.
As it turned out, Elisabeth needed the facilities and fortunately Tiffany's restrooms were more than accommodating for her needs. To be safe and spare a Tiffany shopper from embarrassment, I asked Elisabeth's eleven year old sister to stand guard at the door to prevent anyone from walking in on us.
It was taking a little longer than I expected but I overheard on the other side of the door, a woman's voice inquiring why it was necessary to guard the door. Elisabeth's younger sister responded by saying "my mom is in there with my sister and they need a little privacy. She should only be a moment." After a few moments, I overheard the woman whose patience was wearing thin I imagined asking my daughter, "How old is your sister?"
"Fourteen."
Silence.
"Oh."
I suppose this stumped the woman but she either continued to wait instead of barging in like so many people do after their curiosities get the best of them or she simply moved on because I didn't hear anything else afterward.
After Elisabeth was ready, I opened the door and found standing next to my daughter an employee wearing business attire and sporting a store manager's badge. She smiled at Elisabeth and me, helped me with the door, and went her separate way.
I couldn't imagine in a million years what was going on in that woman's mind while she was standing there and waiting to use the bathroom. A bathroom that was being guarded by an an eleven year old who offered nothing more than a simple request for her to wait because a 14 year old sister needed privacy. In Tiffany and Co.'s restroom of all places.
And this woman waited patiently giving Elisabeth the dignity and privacy she deserved not because she was a shopper at Tiffany's, not because she was disabled, but because she is a human being.
Thursday, July 10, 2008
Dear Joan, Miracles Happen!
Yesterday, a miracle happened at 5 p.m.
And all it took was a week full of rainy days, polyethylene glycol, and a few episodes of "Joan of Arcadia."
I had this theory that if I timed the polyethylene glycol (stool softener) and the "sittings" in the potty chair morning, lunch, dinner time, and bed time, that eventually a pattern would emerge for Elisabeth to use the potty instead of her diaper.
She spent a good deal of time on the floor with toys scattered on the floor. Maybe putting her in a different chair would bring different results. Her body was beginning to tolerate sitting when she turned six provided she had support. All it took was finding a safe potty chair to give her the support she needed. All it took was a little time for relaxation.
Since life happens, year after year, my theory remained what it was. Believe me when I write that I tried. I honest-to-God tried to stay on a schedule, but Elisabeth just wasn't "getting it." The only pattern we saw emerging was relying on this time to do something that didn't involve her.
It was raining yesterday, like the day before, and the day before that one, so we decided to go to the library. My ten year old went straight over to the kid's section and I took Elisabeth over to non-fiction to find that book about potty training to make sure I wasn't missing something. I needed inspiration.
I scanned the library shelves and over to my left, in big red letters I saw "Joan of Arcadia."
Is God talking to me or was I being diverted from my job as Elisabeth's Mom? My job to teach her how to use the potty? Selfishly, wandered over to the DVDs and picked up the first few episodes. I loved that program. Watching "Joan of Arcadia" with my family eating popcorn or ice cream reminded me of the old days in 1965 when I was growing up. When watching television with your family was a treat.
In 2003, it was the ONLY program on network television with which we could relate as a family. It was a good family show and it was going to rain the rest of the day. The kid's needed a diversion. Maybe even a little God. I needed a break from reality.
Like me, both Elisabeth and her ten year old sister were hooked on the "Joan" character so by the time the first episode ended it was time to get ready for dinner. Just as the background music started to play, I picked Elisabeth up and headed towards the bathroom to give her time to sit on her adapted potty.
I sat her down, put her safety belt on, and gave her the "talk" which for the last two weeks seemed pointless since she wasn't showing any sign of interest. The only pattern emerging here was my own using this time to start dinner.
I handed her her plastic chains to keep her busy. Just for a while. Elisabeth loves her plastic chains. Ask anyone who knows her.
The phone rang. I started dinner. And time passed. I peeked in around the door from time to time to check up and there she sat. As happy as she always is. Slurping at her chains. Her shirt. She smiled when I called her name.
I let her be for a little more time. A little extra time. She's safe. She's happy. And I still had more to do in the kitchen. What more could I ask for?
Dinner was almost ready. The table was set. I went in to get Elisabeth who was looking quite the 14 year old. Her head was tilted and she was very involved with her plastic chains. She was grinning. She was happy to see me like always. But this time when I lifted her off the seat, I saw something I've been waiting for a long, long time see.
A miracle.
Miracles happen.
And all it took was a week full of rainy days, polyethylene glycol, and a few episodes of "Joan of Arcadia."
I had this theory that if I timed the polyethylene glycol (stool softener) and the "sittings" in the potty chair morning, lunch, dinner time, and bed time, that eventually a pattern would emerge for Elisabeth to use the potty instead of her diaper.
She spent a good deal of time on the floor with toys scattered on the floor. Maybe putting her in a different chair would bring different results. Her body was beginning to tolerate sitting when she turned six provided she had support. All it took was finding a safe potty chair to give her the support she needed. All it took was a little time for relaxation.
Since life happens, year after year, my theory remained what it was. Believe me when I write that I tried. I honest-to-God tried to stay on a schedule, but Elisabeth just wasn't "getting it." The only pattern we saw emerging was relying on this time to do something that didn't involve her.
It was raining yesterday, like the day before, and the day before that one, so we decided to go to the library. My ten year old went straight over to the kid's section and I took Elisabeth over to non-fiction to find that book about potty training to make sure I wasn't missing something. I needed inspiration.
I scanned the library shelves and over to my left, in big red letters I saw "Joan of Arcadia."
Is God talking to me or was I being diverted from my job as Elisabeth's Mom? My job to teach her how to use the potty? Selfishly, wandered over to the DVDs and picked up the first few episodes. I loved that program. Watching "Joan of Arcadia" with my family eating popcorn or ice cream reminded me of the old days in 1965 when I was growing up. When watching television with your family was a treat.
In 2003, it was the ONLY program on network television with which we could relate as a family. It was a good family show and it was going to rain the rest of the day. The kid's needed a diversion. Maybe even a little God. I needed a break from reality.
Like me, both Elisabeth and her ten year old sister were hooked on the "Joan" character so by the time the first episode ended it was time to get ready for dinner. Just as the background music started to play, I picked Elisabeth up and headed towards the bathroom to give her time to sit on her adapted potty.
I sat her down, put her safety belt on, and gave her the "talk" which for the last two weeks seemed pointless since she wasn't showing any sign of interest. The only pattern emerging here was my own using this time to start dinner.
I handed her her plastic chains to keep her busy. Just for a while. Elisabeth loves her plastic chains. Ask anyone who knows her.
The phone rang. I started dinner. And time passed. I peeked in around the door from time to time to check up and there she sat. As happy as she always is. Slurping at her chains. Her shirt. She smiled when I called her name.
I let her be for a little more time. A little extra time. She's safe. She's happy. And I still had more to do in the kitchen. What more could I ask for?
Dinner was almost ready. The table was set. I went in to get Elisabeth who was looking quite the 14 year old. Her head was tilted and she was very involved with her plastic chains. She was grinning. She was happy to see me like always. But this time when I lifted her off the seat, I saw something I've been waiting for a long, long time see.
A miracle.
Miracles happen.
Sunday, June 29, 2008
Shortbus
Looking for a good summer read? Here's THE BOOK for your summer reading.
Labeled "dyslexic and profoundly learning disabled with attention and behavior problems," Jonathan Mooney was a short bus rider--a derogatory term used for kids in special education and a distinction that told the world he wasn't "normal." Along with other kids with special challenges, he grew up hearing himself denigrated daily. Ultimately, Mooney surprised skeptics by graduating with honors from Brown University. But he could never escape his past, so he hit the road. To free himself and to learn how others had moved beyond labels, he bought his own short bus and set out cross-country, looking for kids who had dreamed up magical, beautiful ways to overcome the obstacles that separated them from the so-called normal world.
Labeled "dyslexic and profoundly learning disabled with attention and behavior problems," Jonathan Mooney was a short bus rider--a derogatory term used for kids in special education and a distinction that told the world he wasn't "normal." Along with other kids with special challenges, he grew up hearing himself denigrated daily. Ultimately, Mooney surprised skeptics by graduating with honors from Brown University. But he could never escape his past, so he hit the road. To free himself and to learn how others had moved beyond labels, he bought his own short bus and set out cross-country, looking for kids who had dreamed up magical, beautiful ways to overcome the obstacles that separated them from the so-called normal world.
Monday, June 23, 2008
Mom! There's a rooster on the beach!!!
Backpacking through Bordeaux Mountain ...
Wading in the ocean with Dad
Mom! Did I just see a rooster go by?
No, Honey, it's only a hen.
Wading in the ocean with Dad
Mom! Did I just see a rooster go by?
No, Honey, it's only a hen.
Smells Like Teen Spirit
This morning, I hear her crying instead of the usual slurping she does during her waking ritual.
When she was young, she would tap a button with a part of her body that activated music when she was getting too close to the rail but she doesn't do that anymore. Now, she tries to get off the bed on her own.
This morning, it's different. She's obviously very sad from a bad dream or maybe it's a gas bubble from the ungodly amount of birthday food intake from yesterday or maybe cramps or maybe constipation or maybe her back hurts. (She had two rods fused when she was 8 years old to correct the helix forming in her back.)
She's still very small for her age. She weighs under 50 pounds and barely comes up to her younger 10 year old sister's shoulder. An Xray of her feet resembles beaver paws from all the paddling she does when using her pony walker and gait trainer. If you let her transfer her weight bearing death grip hands to your wrists, she'll walk very methodically.
Her visual field is a mystery. She doesn't have a focused gaze. Her eyes wander around your face. Her communication is very simple. She uses a tech talk and a saddle switch for making choices.
Recently, we were going through some old summer clothes in her closet and recorded her switch buttons with phrases "OH! I like that!" and on the other "EWWW! I don't like that!" Next, we displayed one article of clothing at a time to let her choose. It was pretty clear after the first few pieces that she wasn't the least bit interested in sorting out her summer cloths. What 13 year old likes to clean her bedroom?
From her play stuff to the stuff she wears, we're easing into "teen hood" slowly getting rid of the "baby stuff." Her habits, preferences, or her growth chart hasn't changed much since she was 7 or 8 years old so a lot of the stuff isn't age appropriate for a 13 year old.
What has changed is her taste in music. She loves drums, guitars, and shakes her head to the rhythm of songs she really likes.
This morning, she's crying. Wailing in fact. To someone who doesn't know her, they would be panicked and on their way to a hospital but somehow I know it isn't serious. I've heard this kind of cry before. She can't tell me what it is exactly but I sense it's something internal so I massage her trunk. My voice is soothing letting her know it will be okay in a few minutes. Then I pick her up to take her to the potty where she still sits and sits and sits and sits and nothing happens.
So I give her a quick bath, dress her, and bring her out for breakfast. She's smiling again. Slurping again. And if she could talk I know what she would be asking for this morning. It would be one of the 5 leftover slices of cheesecake from her birthday.
Elisabeth is 14 today. And it smells like teen spirit.
Elisabeth enjoying her special day
Tuesday, June 17, 2008
Rhetorical Question
Elisabeth's birthday is coming up. It's so hard finding presents that are suitable for her. We've made a lot of our stuff over the years, but she's going on 14 and it's not that easy anymore.
EVERYTHING so expensive for our kids. And the toys that we think might be developmentally appropriate are not age appropriate.
A fiber optics plastic tubing kit is over $4000.00. Does anyone know how cool this toy is for our kids? Fiber optics in our kid's hands give them at least an hour of total pleasure. And it's therapeutic, too; helping them develop fine motor abilities, cause and effect, etc. Also with this group of toys was listed a wonderful light and sound board that kids can manipulate by touch and it's about $7,000.
Hello??? Is anyone listening here?
My guess is that if one of those cheap hand held virtual pets were specially adapted for our children, it would cost around $4000.00 for them instead of what it costs for typical developing kids. Just a guess.
It's not just because everything is expensive. It's been that way since she was born. Listed in several special toy/equipment catalogs are the following:
A bubble making machine is listed as $85.00 ... fortunately Elisabeth's auntie found one for $5.oo at Target.
Disco light ball is listed as $75.00. I found one at Walgreens for $3.99 on sale.
Hand-held sensory stimulation vibrating toys are listed over $100.00. Again, in Walgreens I found one for $3.99 or 2/5.00.
A simple seat pad that connects to her gait trainer is over $500.00 ... a trip to JoAnn Fabrics and we're rigging one up for under $30.00
Weight cuffs and ankles $18.00 each???
Floor Bowling Alley for $500? (This include the same plastic pins you can get at ToysRus for under $10.00. So what is it that costs $490.00? A plastic ball with three holes that my kid can't use?)
Platform and seat swings over $2,000 dollars????
Adapted bicycles over $2,000?
I've gotten a few of the switch toys over the years: Climbing fireman that is now broken, crowing rooster, roller coaster penguins, moving school bus, giraffe with moving neck, dog that flips but most of them are worn out or broken. She has the switch operated pottery wheel but that never worked right.
Her most favorite things are the chain drapery with mirror, fish tank, tomi ball, flexi ball, spongie ball, spikey ball ... hmmmmm ... koosh ball ... she has all the bubble tubes that light up when she hits the switch but she doesn't show any interest in that stuff anymore.
She has a collection of stuff that she made at school: tornado in a bottle, squishy things to touch, textured board, lava lamps, fiber optics fountains ... hmmmmmmm.
She loves ribbons, fabrics, and anything she can put into her mouth but we're trying to get her out of that oral motor stage using her hands for other stuff instead of CONSTANTLY stroking her tongue.
We're out of ideas.
Got any?
EVERYTHING so expensive for our kids. And the toys that we think might be developmentally appropriate are not age appropriate.
A fiber optics plastic tubing kit is over $4000.00. Does anyone know how cool this toy is for our kids? Fiber optics in our kid's hands give them at least an hour of total pleasure. And it's therapeutic, too; helping them develop fine motor abilities, cause and effect, etc. Also with this group of toys was listed a wonderful light and sound board that kids can manipulate by touch and it's about $7,000.
Hello??? Is anyone listening here?
My guess is that if one of those cheap hand held virtual pets were specially adapted for our children, it would cost around $4000.00 for them instead of what it costs for typical developing kids. Just a guess.
It's not just because everything is expensive. It's been that way since she was born. Listed in several special toy/equipment catalogs are the following:
A bubble making machine is listed as $85.00 ... fortunately Elisabeth's auntie found one for $5.oo at Target.
Disco light ball is listed as $75.00. I found one at Walgreens for $3.99 on sale.
Hand-held sensory stimulation vibrating toys are listed over $100.00. Again, in Walgreens I found one for $3.99 or 2/5.00.
A simple seat pad that connects to her gait trainer is over $500.00 ... a trip to JoAnn Fabrics and we're rigging one up for under $30.00
Weight cuffs and ankles $18.00 each???
Floor Bowling Alley for $500? (This include the same plastic pins you can get at ToysRus for under $10.00. So what is it that costs $490.00? A plastic ball with three holes that my kid can't use?)
Platform and seat swings over $2,000 dollars????
Adapted bicycles over $2,000?
I've gotten a few of the switch toys over the years: Climbing fireman that is now broken, crowing rooster, roller coaster penguins, moving school bus, giraffe with moving neck, dog that flips but most of them are worn out or broken. She has the switch operated pottery wheel but that never worked right.
Her most favorite things are the chain drapery with mirror, fish tank, tomi ball, flexi ball, spongie ball, spikey ball ... hmmmmm ... koosh ball ... she has all the bubble tubes that light up when she hits the switch but she doesn't show any interest in that stuff anymore.
She has a collection of stuff that she made at school: tornado in a bottle, squishy things to touch, textured board, lava lamps, fiber optics fountains ... hmmmmmmm.
She loves ribbons, fabrics, and anything she can put into her mouth but we're trying to get her out of that oral motor stage using her hands for other stuff instead of CONSTANTLY stroking her tongue.
We're out of ideas.
Got any?
Friday, June 13, 2008
Wake Up Maggie I Think I've Got Something to Say To You ...
"Perhaps more than any other adviser, Ms. Spellings helped shape the Bush education philosophy: a strict emphasis on standards and accountability, intended to close the “achievement gap” between black and white, rich and poor. While other Republicans talked of dismantling the federal Department of Education, Mr. Bush cast education as a civil rights issue, challenging “the soft bigotry of low expectations.”- taken from a recent article written by Sheryl Gay Stolberg in the New York Times
Even though Margaret Spellings, NCLB czarina, is far from admitting it, No Child Left Behind legislation is a disaster in Ohio. All it did was create an illusion that academic standards and graduation goals were being met by hiding the failures in charter schools, grossly manipulated statistics, and "certificates of completion."
In Ohio, we learned that kids who cannot pass proficiency were warehoused in for-profit charter or contracted school environments operating as for profit. There at the warehouse, the kids are not required to take the proficiency tests so they are entirely missing from the statistics suggesting Ohio students are doing better. Instead they learned how to organize their time, learn about manners, and learn how to play basketball. To make the "drop out" rate go down, kids who are not eligible to receive a diploma are given a "certificates of completion" which qualifies them for one thing -- to serve in the armed forces.
In many school districts right now, contracts that guarantee testing success are offered to schools that are designed to help students "prepare" for the tests. In every school in Ohio, teachers take a detour from their regular classroom responsibilities so kids can log onto computer programs for a few weeks that give similar "test questions" so the kids will know the answers beforehand.
There are still no real statistics that support No Child Left Behind is actually narrowing the disparity between "black and white" and the "rich and poor." The only thing it has done is create an illusion of statistics that were easily manipulated to hide the disparity. We can't put an education template over a large population of children with varying learning styles and preferences.
If you look at the number of kids who are homeschooled or enrolled in public or private school vs. the number of kids who are school age, there's a whole bunch of kids missing in Ohio! Kind of ironic, isn't it?
Special Education News Updates
Click here to keep updated about NCLB, IDEA, FAPE, and other legislatives that prevent or promote special education opportunities for your child.
Thursday, June 12, 2008
Because You Made It So ...
"If you wish to believe [that memory and imagination are components of history], do so with the knowledge that nothing is absolutely true nor is it untrue until someone has made it so." Elizabeth Cook-Lynn
In Memory of Harriet McBryde Johnson
"... because you made it so..."
One February a few years back, Harriet McBryde Johnson wrote an article, "Unspeakable Conversations," about our need to educate each other how disability labels devalue "existence" for our children who are tagged with one. She defended our child's right to be who they are, with or without a disability.
As I was re-reading through her article today, I remember that it was also the same February I was writing about my own frustration with being unable to articulate my concern for my daughter's future. The "advocate" label was wearing thin on me. I was losing hope. I asked, what kind of world was I leaving her to?
I feared I was leaving her to a world that still sees her as an object of pity if they see anything at all. A world that continues to see her "being" as only an afterthought. A world where she must wait for people who don't even acknowledge her existence until it's time to fill out the paperwork or change her diaper or feed her.
I had hoped to send a universal message of appreciation and thanks that February to anyone out there who had ever helped another person connect to their own humanity. To anyone who ever gave damn about our children's "being."
I'm glad that Harriet got the message.
Ms. McBryde Johnson's article "Unspeakable Conversations" is linked by clicking HERE.
In Memory of Harriet McBryde Johnson
"... because you made it so..."
One February a few years back, Harriet McBryde Johnson wrote an article, "Unspeakable Conversations," about our need to educate each other how disability labels devalue "existence" for our children who are tagged with one. She defended our child's right to be who they are, with or without a disability.
As I was re-reading through her article today, I remember that it was also the same February I was writing about my own frustration with being unable to articulate my concern for my daughter's future. The "advocate" label was wearing thin on me. I was losing hope. I asked, what kind of world was I leaving her to?
I feared I was leaving her to a world that still sees her as an object of pity if they see anything at all. A world that continues to see her "being" as only an afterthought. A world where she must wait for people who don't even acknowledge her existence until it's time to fill out the paperwork or change her diaper or feed her.
I had hoped to send a universal message of appreciation and thanks that February to anyone out there who had ever helped another person connect to their own humanity. To anyone who ever gave damn about our children's "being."
I'm glad that Harriet got the message.
Ms. McBryde Johnson's article "Unspeakable Conversations" is linked by clicking HERE.
Subscribe to:
Posts (Atom)