IEP: Focus on Strengths Not Weaknesses

 

IEP: Focus on Strengths Not Weakness

 

We are almost a month into the new 2011/2012 school year. About a week ago, when I was volunteering in my daughter's second grade classroom, after we went on a field trip, her teacher told me, "She is a good reader." I agreed she was. When I got home later and reflected, I realized that her teacher's comment was giving me hope. Hope for a school year, in which staff recognized her abilities. It was the first time, I have ever been told by a staff member at my daughter's school, that she is "good" at something academic. Strengths are mentioned but "good at something" was a first.

Her report cards and IEPs in the past have included positive feedback like, "She is an active participant in singing and dancing," "She has worked hard to gain new skills in all areas," "She can independently follow classroom routines," and "She has a delightful disposition." We also have seen positive reports of progress through the codes and numbers selected on those documents. However pleasant those compliments and grading marks are they are things we already know about her personality, determination, and progress and are not complimentary remarks about what she excels in. Written or verbal praise of Karley's academic strengths are far and few in between.

Today, I received her proposed IEP, from the educational team at school, to review before our meeting in two days. The school professionals involved in constructing her IEP consist of a general education teacher, occupational therapist, special education teacher, and speech language pathologist. The rest of her team that attends the meeting and contributes to shaping her IEP include myself, my husband and a school administrator. I flipped to the Present Level of Educational Performance page and began reading the General Education section. It started out great with compliments about her strong presence in the general education classroom, friendliness, and being well liked by peers and moved to another truth, that she demonstrates below grade level skills. After that though, it all went down hill.

I understand that the Present Level of Educational Performance page should accurately identify her current academic performance and recent assessment scores objectively. Why in the world though, does it have to be written in such a negative manner? Instead of writing, "She lacks basic readiness skills in all academic areas," it could have been noted that, "Readiness skills in all academic areas need to be developed," or instead of a negative statement like, "She requires full assistance in order to complete any kind of independent classroom work," it could have been something like, "Assistance with classroom work is necessary for completion." The IEP could also be written from a standpoint of how her disability affects her participation. The phrase, "She struggles to keep pace with her peers," could be in the form of, "Her delay affects her pace." The words we use really do make a difference.

Words are important to me. Words also play a part in how we perceive others. There is a huge shift in perception, from a child who lacks in all areas, requires full assistance in order to complete any work, and struggles to keep up with peers, to a child who needs to develop skills, receive assistance, and has a slower pace. Without saying it, it is being portrayed, that my daughter is a lackluster, needy, struggler. The way the document is written it insinuates that she will never amount to her peers by comparing her to them, instead of looking at her strengths as an individual. I would like to see her IEP build on what she does well not focus on reducing her down to deficits.

There is a lot of word work that needs to be done on this year's legal, binding IEP contract we have entered in to. This document should be agreed upon and agreeable. There comes a time when you must reconsider many things in life. One of these considerations at the present is my daughter's IEP. This will be her third year of attending our neighborhood school as a fully included student with Down syndrome with minimal pull out to special education settings, for specialist services. At this point I feel her IEP in itself should be more positive and constructive and don't feel that is too much to ask.

There is no time like the present to make it over. Karley is a learner and should be described in that way. Especially, when our neighborhood school houses a segregated, high needs program for third to fifth graders. Come June, her IEP must not reflect weakness and must focus on her strengths. Unless it is changed, the current document could be someone's proof that she belongs some where other then general education, next year as a third grader, because of the way it is written. I look forward to addressing this at our next meeting.   

Adopting: Domestically, Internationally, or Not At All

 

Adopting: Domestically, Internationally, or Not At All

In 2006, the Associated Press published an article on adoption of children with Down syndrome. It revealed that there is at least 150 people on a waiting list, at any given time, who want to adopt children with Down syndrome. Today, I have read that the number of families waiting to adopt a child with Down syndrome is 200 or more. Why has it become a trend to adopt children with Down syndrome?
 
According to the same article, our society is changing, in the way we look at people with Down syndrome. The explanation is due to a shift in acceptance, and in an increrase of inclusion, for people with Down syndrome in our culture. Individuals looking to adopt, believe children with Down syndrome are better candidates for adoption than children with other disabilities. There is also mention, that the positive outlook toward individuals with Down syndrome, is due to medical and educational advances, which is leading to fuller and longer lives of people with this diagnosis.     

Thousands of children with Down syndrome in our country need to be adopted. Fortunately, we have a system that will support children given up for adoption. It isn't a perfect system but it allows children of the state to be supported and placed into foster care. Foster families are provided to help these children grow in stable households and live meaningful lives. There are programs like the National Down Syndrome Adoption Network, that connect families to state and local agencies when they have decided to domestically adopt a child with Down syndrome, who is waiting for a family.  

Unfortunately, other countries with larger populations, have even higher numbers of children waiting for adoption. Countries like China and Russia tend not to have the resources we do here, for children waiting to be adopted, or the progressive attitudes and beliefs about a Down syndrome diagnosis. These systems rely on orphanages and institutions to handle unwanted children. The living conditions, for the children who are housed there, lack stimulation and necessary means to raise any child. Reece's Rainbow is a non-profit organization that offers donation based grants to help families adopt children internationally.     

Those who are interested in adopting may be able to receive grants through their place of employment or paid days off to travel during the adoption process. Other assistance can come through financial aid of churches, as well as, personal fundraising efforts. However, adoption isn't for everyone. People who don't want to adopt but still want to help can become foster parents or make donations to programs that help with adoption. No matter how, you can help. Your support will help a child become adopted and save their life.            

Buddy Walk 2011

Buddy Walk 2011

The National Down Syndrome Society started the Buddy Walk in 1995 to celebrate Down syndrome. The Buddy Walk takes place in late September or early October to kick off Down syndrome awareness month. About 300 Buddy Walks will take place accross the country and nearly 300,000 people will participate in a Buddy Walk this year. Buddy Walks promote acceptance and inclusion of people with Down syndrome and is an event I look forward to every year.

      

Our family has attended the Northwest Down Syndrome Association Buddy Walk in Portland, Oregon since 2004. This walk draws at least one thousand guests and celebrates with a band, food, and festivities. The first time we went to the Portland Buddy walk I was amazed. To be part of a group of one thousand people who all came to together, to share their support and love for people wth Down syndrome was such an inspirational feeling. It truly felt like we could conquer the world together-power in numbers.

In 2008, I coordinated the 10th annual Buddy Walk in Portland. It was a huge job to oversee but one of the most awesome experiences to help make happen. That year, like every, was made possible by fantastic volunteers, a dedicated board of directors, donations from local businesses, and community advocates. So much hard work goes into a Buddy Walk celebration but when it all comes together it is so worth every moment. 

This year was just as amazing as the previous! I got a chance to visit with many people, play in the fountain with my daughter, and spend a beautiful day outside with a thousand other people who joined together to celebrate people with Down syndrome. Buddy Walk is great way to build community and share all the things there are to look forward to in people with Down syndrome. 

October is Down syndrome Awareness Month

October is Down syndrome Awareness Month

This month my challenge, to you and myself, is to create Down syndrome awareness by blogging everyday of October. It is important to share information and truths about Down syndrome to help break stereotypes and bust myths about people with this diagnosis. Down syndrome is NOT a disease or death sentence. Down syndrome is an extra 21st chromosome and that's that. People with Down syndrome are just like everyone else in every other way. The problem with Down syndrome begins with our cultural beliefs about it and does not begin with the people who have it.  

When my youngest daughter was born in 2003 we were shocked when we were told she might have Down syndrome. I was twenty four and not at risk of having a baby with Down syndrome, right? Well, that busted a myth. When I was pregnant, the only things I remember hearing about Down syndrome was that women over forty had a higher risk of having a baby with Down syndrome. That is still true. What I never heard though, was that the majority of women in their twenties and thirties are the ones having children most often, so they are the ones having babies with Down syndrome most frequently. Never once did I consider that I would have a child with Down syndrome.    

It only took us a matter of moments to ask the question that immediately came to our minds. What does this mean for our daughter's future? All the things that meant Down syndrome to me at the time rushed to my mind. I didn't know it, but my truths about Down syndrome were really stereotypes. The people with Down syndrome I imagined, didnt have real and full lives. What I thought was factual about people with Down syndrome was false. In reality, I knew nothing about Down syndrome. My inaccurate perceptions were all I had and not what I needed to begin celebrating the life of my little baby girl. Thankfully, my husband had real experience with individuals with Down syndrome and our doctor told us that our baby's future was what we made of it.   

We quickly realized that our baby had had Down syndrome the moment she was conceived. She hadn't changed one bit and our love, dreams and future for her shouldnt either. The way we thought of her before Down syndrome, what we expected from her as our child, and how we raise our children needed to remain the same. If we altered ourselves we would be altering our child's life. She would lose her identity as our daughter and become society's skewed idea of a person with a Down syndrome diagnosis. We wouldnt give up our dream for our daughter's life, and made her the priority, not her medical label.           

  

We began on an unexpected mission to make her future real. We decided that no one would determine how our daughter's life would be except us. So we researched Down syndrome online to become experts ourselves. It was impotant to us that we knew as much as possible so that we could make informed decisions. We didn't want to just trust what we were being told, we wanted to know if we should agree or not with what was being said about our baby girl. There was no better time than the present to begin to advocate for our daughter, and what we believed was right for her, just like we would for our older daughter.

Let's just say the day our youngest daughter was born didnt turn out how we expected. However, we knew in our hearts that we didn't have to buy into anything we didnt want to. Even though that day I began with a bias about Down syndrome I ended it with becoming educated about the diagnosis. We didn't let all of the possible medical concerns bring us down, we didn't let other's pity marginalize us, we didn't feel sorry for ourselves or our daughter, and we just didn't feel like we needed to cope with a loss. Nothing was lost and we gained so much. We gained a beautiful child, we gained Down syndrome awareness, we gained strength in our family beliefs and values, and we gained hope for the future. Down syndrome went from a moment of fearing the unknown, to precious hours of getting to know our baby, to a day of unconditional love that made us fearless.

Down syndrome is not the problem. The biggest issues we have ever faced are the misconceptions that other people believe about Down syndrome. The hardest things we have had to deal with are people's hurtful words. The toughest times we have had are making sure that our daughter receives every opportunity that every child without Down syndrome receives. Yet those times have also benefited us and others by helping fine-tuning our advocacy skills and being able to share our life. The tough times will never, ever amount to the all of the wonderful times we have had. The challenging moments are far and few between in comparison to the last eight years of heart warming memories, joy, growth, and more love then we ever imagined possible. Down syndrome has been our key, that has unlocked the life we share today.                 

Press Release: GQ's Down Syndrome Diversity Intolerance

Media Alert

CONTACT
Jamie Lesley Burch
jlesleyburch@yahoo.com

*** FOR IMMEDIATE RELEASE***

July 25, 2011

GQ: Issue Apology for Down Syndrome Discrimination

Over 600 Supporters Sign Growing Petition Asking GQ Magazine to Apologize for Publishing Diversity Intolerance About Individuals with Down Syndrome

A letter and petition was delivered to GQ editors and staff, in regards to a slur about people with Down syndrome, published in their magazine on July 15, 2011. Ten days has passed since GQ Magazine’s offensive and demeaning prejudicial view was available for the world to read, and marks the tenth day, GQ has not apologized for approving this major social injustice.


Discriminatory views, disapproving attitudes, and uninformed misconceptions, about Down syndrome, like the one GQ’s author wrote, is the type of prejudice advocates are fighting against, through the petition, GQ: Issue Apology for Down Syndrome Discrimination.  This effort is in place to help rid our culture of derogatory remarks about people with Down syndrome through public recognition from GQ about their mistake. Disability rights and oppression must be addressed, in order to accept the 400,000 people in our nation, with the naturally occurring genetic anomaly diagnosed as Down syndrome. 


The only way to reach out to everyone affected by GQ’s harmful public mistake is for them to publicly make amends. People across the world are waiting for an official acknowledgment in response to GQ’s diversity intolerance, about people with Down syndrome. Until then advocacy will continue by, signing the petition, writing concerns to letters@gq.com, urging others to ban GQ magazine, and creating Down syndrome awareness by sharing how you feel this matter has detrimentally affected our society. 

** “Style Down Syndrome” is living life to the fullest! **

###

Apology Petition Letter to GQ Magazine

Petition letter on behalf of, GQ: Issue Apology for Down Syndrome Discrimination campaign, sent to GQ ten days after their disaparaging Down syndrome remark, with personal comments and six hundred signatures:

July 25, 2011

Dear GQ Magazine Editors & Staff,

This letter is in regards to discriminatory content, published about people with Down syndrome, by your magazine on July 15, 2011. The fashion article, 40 Worst-Dressed Cities in America by John B. Thompson states, "Due to so much local inbreeding, Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything". This reference is offensive and demeaning. Circulating a prejudicial view, and targeting people with Down syndrome, has detrimentally impacted many people and caused a major social injustice.

Insinuating that Down syndrome is caused by inbreeding, and suggesting that extra genetic material ruins a person, is false. Not only are the words you published untrue, but they are just as harmful as if you would’ve published a sexist, racial, religious, ethnic, ageist, or social orientation slur. Ableism is real, and rooted by words like Thompson's. Even if his comment wasn’t meant that way, that is what it means, and therefore has had a tremendous effect on thousands of people.

The majority of people in our society don't have a personal connection with someone who has a disability. This causes most people not to hold a high value for people with disabilities in their own life. Until disability has value to a person, they usually don’t care enough to understand how damaging inbred societal messages about people with disabilities are. Our society’s disability related skewed perceptions, uninformed words, and dehumanizing actions must stop to end oppression faced by people with Down syndrome and other disabilities. Spending quality time with someone, who also happens to have Down syndrome, will allow the opportunity to get to know a person well enough to see them as an individual. If you never have a relationship with someone with Down syndrome you will only have an outdated, inaccurate judgment of a negatively viewed diagnosis.

Discriminatory assumptions of any kind resonate and causes myths, disapproving attitudes, and uninformed misconceptions. This type of prejudice has been conquered by other minority groups, and will be for people with disabilities someday too. Advocates across the country are fighting against derogatory remarks like the one published by your magazine, through: respectful language laws; promoting people first perspectives; educational opportunities; and many other advocacy efforts. Our culture needs to understand more about what a Down syndrome diagnosis means in order to be accepting of the 400,000 people in our nation with this naturally occurring genetic anomaly.

In fact, ninety percent of women who find out they are pregnant with a baby with Down syndrome decide not to continue the pregnancy because of what they think they know based on societal assumptions like the one you published. That statistic alone is proof enough of how misinformed and fearful our society is about Down syndrome. Life changing decisions are being made based on prejudice without truly being informed. What people don't get the chance to find out, is that Down syndrome is not: a disease, disappointment, or a definition of a person. Down syndrome is: a confidential diagnosis, unique trait, and a part of a person with unlimited potential.

Today, Down syndrome means rights and respect, and there has never been a better time then now to be someone with Down syndrome. Our technological possibilities, medical advances, inclusive educational practices, parent and professional advocacy efforts, and numerous other options have empowered individuals with Down syndrome to lead successful lives. Truthfully, “Style Down Syndrome” is living life to the fullest. One can only hope to achieve as many goals and gain as much independence as individuals with Down syndrome do.

Over six hundred people have signed the petition, GQ: Issue Apology for Down Syndrome Discrimination, asking you to apologize for publishing diversity intolerance about people with Down syndrome. Over 3,200 interested people have viewed the petition to find out why you need to make amends and what the controversy is all about. This campaign, the numerous articles published about yours, the televised Fox News interview, and all of the emails sent to your editor are more then enough reason to owe the public an apology. Please respond to America by issuing a statement.

You still have a chance to turn this unfortunate situation around and help our society presume the best about people with Down syndrome. Today marks tens days since you published a Down syndrome slur, and marks the tenth day your company has not apologized for publishing it. An official acknowledgment in response to this serious diversity intolerance matter will create positive publicity for your company, and Down syndrome awareness as well. Altering your article’s original content, and sending form emails to those people who wrote to your editor, isn’t enough and doesn’t reach everyone affected.

Attached are signatures and personal comments of everyone to date, who needs to be reached out to about this matter. If you would like reliable and current information and resources about Down syndrome, please visit: www.ndss.org . If you would like to contact me personally with questions, or to have a phone conversation with me, please email: jlesleyburch@yahoo.com with your contact details. We are all waiting to hear from you.

Sincerely,

Jamie Lesley Burch
GQ: Issue Apology for Down Syndrome Discrimination Campaign

Why Does GQ Magazine Owe Everyone an Apology?

After I yell at my kids or argue with my husband, I eventually say sorry, even though it isn't always easy. Why apologize? Beside doing the right thing, a few reasons to be apologetic come to mind; admit your faults, show apathy, take responsibility for your actions and feeling remorse. When idolized athletes, prominent actors, and White House representatives have been spotlighted for using the r-word, a form of socially repressing people with a disability, those at fault, publicly explain, or join the efforts of the Spread the Word to End the Word campaign, or meet with Special Olympics to clear the air of their mistake, for one good reason or another of their choice. Well, what happens if an apology isn't issued? 

On July 15, 2011, GQ magazine published an unethical review by John B. Thompson about fashion in Boston as part of the article, "Worst-Dressed Cities in America". Boston was the number one offender and Thompson wrote, "Due to so much local inbreeding, Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything." Something bigger then Thompson's nerve is the scale of how harmful his demeaning words are, to society as a whole, but especially individuals with Down syndrome. This type of prejudicial discrimination toward the 400,000 people with Down syndrome in the U.S. is intolerant, offensive, and inaccurate.

The article has since been revised by the removal of Thompson's statement but GQ has not offered its readers an explanation as to reason for the revision and a full week later the magazine or author has yet to make amends. When will they? Everyone is wondering how GQ can publish a discriminatory remark about people with Down syndrome and act like it never happened. Do they think we will forget? Numerous concerned advocates have submitted emails to letters@gq.com, letters from national Down syndrome organizations have been mailed, a handful of articles have been published, many blogs written, FoxNews covered the story, and I created a growing petition, that I informed GQ about, (http://signon.org/sign/gq-issue-apology-for), which has been signed by over four hundred people, that asks for a public apology ......... but GQ has still not issued a response. Why apologize?  Disability oppression is a social tragedy and their public apology is an appropriate step in trying to repair some of the damage they have caused everyone.